Advocacy | EATG European AIDS Treatment Group Fri, 19 Jan 2018 00:01:43 +0000 en-US hourly 1 U=U laggards draw fire from the community Wed, 17 Jan 2018 22:59:19 +0000 The global U=U picture is good, but community activists are stepping up the heat on organizations which have been slow to embrace it. Today the spotlight is on Greater than AIDS, GNP+ and in Canada, the Ontario AIDS Network. Bob Leahy reports.

Read the full publication here.

Timothy Ray Brown, cured of HIV, rallies public to support research funding Wed, 17 Jan 2018 22:55:17 +0000 New Rochelle, NY, January 17, 2018—In the 10th anniversary year since a bone marrow stem cell transplant cured Timothy Ray Brown of his HIV infection, despite disappointment over decreasing public desire to find a cure for HIV, Timothy Ray Brown remains optimistic that the scientific and medical communities can and will achieve this if properly funded. He describes his most recent activities and the basis for his pessimism and optimism in the article “Timothy Ray Brown’s Continuing Activism Toward Curing HIV,” published in the latest HIV Cure Research Issue of AIDS Research and Human Retroviruses, a peer-reviewed journal from Mary Ann Liebert, Inc., publishers. The article is available on the AIDS Research and Human Retroviruses website.

Throughout his “10 Cure Birthday” year’s busy schedule of activities, Timothy Ray Brown “learned a few things last year that I found disappointing…I participated in two HIV cure seminars…The responses from many [participants] surprised me. Perhaps I misinterpreted this but I would say most of them indicated that they were afraid of HIV being cured. This is mostly due to the fear of how it would worsen their lives, that they would stand to lose all or most of the benefits they have today.”

“The development of drugs to treat HIV infection has saved countless lives but led to complacency about this horrible virus,” says Thomas Hope, PhD, Editor-in-Chief of AIDS Research and Human Retroviruses and Professor of Cell and Molecular Biology at Northwestern University, Feinberg School of Medicine (Chicago, IL). “In this update of his travels as an advocate of HIV cure research, Timothy Ray Brown reminds us that we still need to advocate for funding and educate the public about the important impact that a functional cure for HIV would have on society while understanding the complex ways that a cure would impact people living with AIDS. His insights as the first person cured of HIV are fascinating.”

About the Journal

AIDS Research and Human Retroviruses, published monthly online with open access options and in print, presents papers, reviews, and case studies documenting the latest developments and research advances in the molecular biology of HIV and SIV and innovative approaches to HIV vaccine and therapeutic drug research, including the development of antiretroviral agents and immune-restorative therapies. Content also explores the molecular and cellular basis of HIV pathogenesis and HIV/HTLV epidemiology. The Journal features rapid publication of emerging sequence information, reports on clinical trials of emerging HIV therapies, and images in HIV research. Tables of content and a sample issue may be viewed on the AIDS Research and Human Retroviruses website.

About the Publisher

Mary Ann Liebert, Inc., publishers is a privately held, fully integrated media company known for establishing authoritative peer-reviewed journals in many promising areas of science and biomedical research, including AIDS Patient Care and STDs, Viral Immunology, and Journal of Interferon and Cytokine Research. Its biotechnology trade magazine, GEN (Genetic Engineering & Biotechnology News), was the first in its field and is today the industry’s most widely read publication worldwide. A complete list of the firm’s 80 journals, books, and newsmagazines is available on the Mary Ann Liebert, Inc., publishers website.

WHO leadership meets with TB civil society to strengthen engagement in accelerating the End TB response Wed, 17 Jan 2018 22:50:24 +0000 17 January 2018 | Geneva: Civil society representatives met with WHO leadership in Geneva, on 15-16 January 2018, with the aim of strengthening collaboration to end TB. WHO Director-General Dr Tedros Adhanom Ghebreyesus and Dr Tereza Kasaeva, Director of the WHO Global TB Programme, opened the meeting, and Dr Soumya Swaminathan, Deputy Director-General, Dr Ren Minghui, Assistant Director General for the Cluster for Communicable Diseases, Dr Berhard Schwartlander, Chef de Cabinet, and Dr Lucica Ditiu, Executive Director of the Stop TB Partnership all expressed support for a much closer working relationship.

“It is inspiring to meet with TB civil society representatives at WHO,” said  WHO Director-General Dr Tedros Adhanom Ghebreyesus. “We all need to work as one if we are to end TB. I am solidly committed to this cause with my strong leadership team and in collaboration with the Stop TB Partnership.”

The effort to strengthen civil society engagement comes on the heels of increased political attention, with the First WHO Global Ministerial Conference on Ending TB held in Moscow last November, as well as other high level meetings which highlighted TB in their communiques including the BRICS and G20.  2018 is seen as a critical year with the upcoming UN General Assembly High Level Meeting (UNHLM) on TB, which will bring together Heads of State.

During the Geneva meeting, Ms Blessi Kumar from the Global Coalition of TB Activists stated, “Never before in the history of WHO has meaningful engagement with civil society and communities been taken so seriously. I feel a lot of hope for the End TB response moving forward and would like to thank Dr Tedros and Dr Tereza for their openness to listen and engage. This will be critical not only in the lead up to the UNHLM on TB, but also beyond.”

Building on a decade of collaboration of WHO with TB civil society, discussions revolved around the next phase of effective engagement in order to accelerate efforts to end TB, as well as in preparations towards the UNHLM on TB. Key asks were formulated for the WHO Director-General, including support in ensuring meaningful engagement of civil society at regional and country levels through WHO Regional and Country Offices, and through interactions with Ministers of Health.

“Civil Society engagement is invaluable to efforts to end TB and reach the Sustainable Development Goals as a whole,” said Dr Tereza Kasaeva, Director of the WHO Global TB Programme. “Their voice and actions will enable no one to be left behind. Together we are stronger.”

Dr Lucica Ditiu, Executive Director of the Stop TB Partnership added, “We have 12 years to end TB and only together can we achieve this. At Stop TB Partnership, we are thrilled with the new WHO leadership’s strategic vision to work together, hand in hand, with us and civil society and communities to end TB. We are committed to work as ONE team to achieve our objective and this is an inspirational way to start the new year!”

This meeting was Dr Tedros’ third major interaction with TB civil society as WHO Director-General. He met with civil society, in advance of the Ministerial Conference on Ending TB on 16 November. This was followed by a teleconference with civil society representatives in late December. The Geneva meeting is only the first of a series of meetings planned this year.

Snapshot: Voices of Meeting Participants

Global summit on IP and access discusses impact of TRIPS-Plus measures on public health Wed, 17 Jan 2018 19:57:31 +0000 A network of civil society organisations chose the birthplace of the World Trade Organization, Marrakesh, to hold a global summit on intellectual property and access to medicines this week. Part of the summit focused on stringent IP measures in free trade agreements in particular with the European Union, introducing patent term extension and data exclusivity periods.

The Global Summit on Intellectual Property & Access to Medicines: Pathways to Access is taking place from 15-17 January in Marrakesh, Morocco. At the same time as the agreement to establish the World Trade Organization, the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) was adopted by all WTO members in 1994.

The summit was organised by the International Treatment Preparedness Coalition (ITPC), and is meant to bring together community representatives, governments, civil society, academics, experts and international agencies to look at the impact of international trade rules on public health, and highlight the role of non-governmental organisations and patients in the implementation of TRIPS flexibilities.

A number of panels were organised around the themes of the role of patent examination to prevent bad patents; making compulsory licences (CLs) routine; understanding and resisting TRIPS-plus measures; how least-developed countries can make effective use of the transition periods; local production and technology transfer; possibilities and challenges of pro-health patent law reform in developing countries; and challenging unmerited patents.

The panel on resisting TRIPS-plus measures described efforts to fight measures that go beyond the TRIPS minimum requirements.

EU Seeking TRIPS-Plus Measures in Morocco

Mohammed Said Saadi, economist and a former minister in Morocco, said since the 1980s there has been a clear regression of human rights in the context of international trade, due to neo-liberal policies. The Southern and Eastern Mediterranean region is the object of fierce competition between the United States and the European Union, both coveting the regional market, he said.

The United States scored on the pharmaceutical front, and advanced its interests through free trade agreements with Jordan and Morocco, he said.

According to Saadi, the EU is trying to impose a new trade agreement aligned with TRIPS-plus measures that Jordan and Morocco have already accepted through their free trade agreement with the US.

The ongoing Deep and Comprehensive Free Trade Area (DCFTA) discussions between the EU and Morocco are introducing TRIPS-plus measures, he said, underlining the secrecy of the negotiations.

There have been very few studies on the impact of TRIPS implementation in Morocco and in Jordan, he said, adding that he only found one impact study. Oxfam published a briefing paper [pdf] titled, “All costs, no benefits: How TRIPS-plus intellectual property rules in the US-Jordan FTAs affect access to medicines,” in 2007.

According to the study, medicines prices in Jordan have increased 20 percent since 2001, and “higher medicine prices are now threatening the financial sustainability of government public health programmes.”

Saadi said data exclusivity has delayed generic competition for 79 percent of medicines newly launched, and almost no foreign direct investment was done by drug companies into Jordan.

EU-Mercosur, TRIPS-Plus Measures, Assessment

Daniel Pinto, counsellor, Intellectual Property Division, Brazilian Ministry of Foreign Relations, talked about the ongoing Mercosur-EU trade negotiations. The current trade agreement with the EU is being negotiated with the four founding members of Mercosur (Argentina, Brazil, Paraguay, and Uruguay), according to the EU website.

Pinto underlined the reliance of Mercosur countries on exports of agricultural products, which makes the agreement with the EU very important to access the EU market. Mercosur, however, is not as consolidated as the EU, the four countries do not have the same interests, legal systems are not always harmonised, and they also do not have much experience in joint negotiations, he said. Thus negotiations go into two tracks, the first is negotiating with the EU, and the other is building confidence among Mercosur countries, he added.

In the Mercosur discussions, Pinto noted that the EU requested that in case of administrative delay by drug regulatory authorities to bring a patented medicine on the market, the patent term would be extended accordingly. He said in that case an administrative solution should be found to address the issue, not extending the patent term, as the two issues are unrelated.

The EU follows its argument according to which over 42 percent of the total economic activity in the EU is generated by intellectual property-intensive industries, he said. However, the impact of the proposed TRIPS-plus measures on countries should also be taken into consideration, he added.

He cited a 2017 Mercosur-EU Free Trade Agreement impact analysis [pdf] of TRIPS-plus measures proposed by the EU on public purchases and domestic production of HIV and hepatitis C medicines in Brazil. The study was co-authored by Gabriela  Costa  Chaves, Sergio Arouca, Walter Britto Gaspar of the Oswaldo Cruz Foundation (ENSP/Fiocruz), and Marcela Fogaça Vieira, consultant for the Shuttleworth Foundation.

The analysis, which was explained by the authors in an Intellectual Property Watch Inside Views article (IPW, Public Health, 1 December 2017), found that if a 5-year data exclusivity in patent term extension is agreed upon, it would translate in an additional expenditure of US$ 1.2 billion from 2015 to 2050 for HIV medicines, and for hepatitis C medicines, an additional expenditure of US$14.5 billion from 2016 to 2051, he said.

Intellectual property is not a bargaining chip, Pinto said, and added that the lack of clarity about what is at stake in IP jeopardises efforts to preserve policy space. He called for civil society to continue to raise awareness and apply political pressure, for academia and researchers to provide impact studies based on hard facts, and for negotiators to be mindful of their responsibility toward present and future generations.

Once TRIPS flexibilities are given away, the cost of recovering them is huge, he said in his presentation.

Fogaça Vieira said the IP chapter of the EU-Mercosur FTA would affect parallel imports, provide an extension of the patent term, and introduce data exclusivity.

The impact of TRIPS-plus measures in Brazil would affect hepatitis C medicines more than they would antiretrovirals, because Brazil has put in place some policies to reduce the impact of TRIPS-plus measures on those medicines, which is not the case for hepatitis C, she explained.

She suggested that more impact studies be done on public health and human rights impacts of TRIPS-plus measures proposed in FTAs, and that the negotiations should be more transparent.

Lorena di Giano of Fundación Grupo Efecto Positivo (FGEP) in Argentina, a Mercosur country, said Argentina has no data exclusivity provision in its law. The country conducted a IP impact assessment study performed on 17 antiretroviral drugs procured by the National Ministry of Health, from 2020 to 2050, she said.

Several scenarios were explored, including some with patent extensions and data exclusivity, and a combination of those two TRIPS-plus measures, and the study showed a significant increase in public procurement budget if those measures were adopted.

Ukraine’s TRIPS-Plus Provisions

Oksana Kashyntseva of the National Institute of Intellectual Property of Ukraine said the trade agreement (Deep and Comprehensive Free Trade Agreement) between Ukraine and the EU has been costly.

In 2008, Ukraine signed TRIPS on the basis of TRIPS-plus provisions, she said, and until now, there has been no political will to implement TRIPS flexibilities into the national legislation. She described the Ukraine efforts on access to medicines, in particular the challenge of harmonising IP law, unfair competition law, and rights to access to medicines. Ukraine is working on an ongoing patent law reform.

Sergey Kondratyuk of the All-Ukrainian Network of People Living with HIV explained the court claim brought by Gilead against Europharma International, the Ukrainian Drug Regulation Authority and the Ministry of Health. The Gilead claim was based on data exclusivity protection.

In January, a settlement agreement was reached through which Ukraine had to cancel the marketing authorisation of granteziano (a generic version of original Gilead sofosbuvir), and protect Gilead’s rights. Gilead on its part had to set the price of sofosbuvir at US$250 for the government at least during the period of data exclusivity, and at US$349.90 for pharmacies, Kondratyuk said.

In December, Europharma won the lawsuit in first instance on restoring the generic sofosbuvir marketing authorisation, and Gilead served the Antitrust Committee of Ukraine with an application in investigation of concerted actions, he said.

Mohammed El Said, reader in International Trade and Intellectual Property Law at Lancashire Law School, at the University of Central Lancashire, United Kingdom, said there has been a lack of “real” innovation over decades in pharmaceutical products in terms of research and development. There has been however a rise in the number of granted patents, he said. Those patents do not have major value and contribution, he said.

Delinkage as Way Forward

In the audience, James Love of Knowledge Ecology International said the regulation of monopolies alone does not yield very strong results in terms of access to medicines. The issue of the costs involved in research and development should be addressed through delinkage of those costs from the end price of the medicines, he said. A growing number of people are focusing on the idea of separating the incentive from the price of drugs, Love said. High prices should not be a mechanism or an incentive for research and development, he said, adding that innovation should not be pitted against access.


TB Europe Coalition releases two new publications Tue, 16 Jan 2018 22:55:48 +0000 TB Europe Coalition released two new publications – an information brochure about the forthcoming United Nations High-Level Meeting on TB to be held in September this year, and a set of infographics.

The brochure explains what a United Nations High-Level Meeting is in general and what a United Nations High-Level Meeting on TB means, what the role of civil society is at global and regional level, and how civil society can get involved at national level before, during and after the meeting.

The infographics, produced in English and Russian, are an advocacy tool presenting the actual and projected economic impact of TB per country for the period 2000-2015 and till 2030, respectively in the World Health Organization European Region. The infographics are based on the KPMG report, The global economic impact of TB, released last year.

Give another push for EMIS and ECHOES! Wed, 03 Jan 2018 22:35:17 +0000 Both European surveys: EMIS2017 (for MSM) and ECHOES (for community health workers working with MSM) are still open. Both surveys are available in several different European languages.

ECHOES: We invite Community Health Workers who provide sexual health and support services for MSM in the EU and neighbouring countries to participate at www.echoessurvey.euThe deadline has been extended until 31 January 2018. Don’t forget that anyone who provides sexual health support to MSM in community settings (i.e. not in a hospital or a clinic) can participate in ECHOES – whether you are a medically trained professional, a counsellor or a lay-person, whether the work is done on a full-time, part-time or occasional basis, and whether the work is done on a paid or voluntary basis.
EMIS: We invite all men who have sex with men to contribute to this important survey about relationships, sex life, risks and precautions, and use of health services. You can access it here until 17 January 2018.

You are welcome to disseminate this information in your networks.

Both surveys are part of the ESTICOM project, please read more at

EATG has been a key partner in both projects. We have also used the data resulting from the previous round, EMIS2010, extensively to support our advocacy work over these years. ECHOES is new but equally important, and it will be followed up with a series of training sessions for community health workers across Europe to make them even better in what they do.
By participating, and by making sure that the survey reaches the widest possible audience of gay men and other men having sex with men, we can generate even better and more relevant datasets for our future work.
Please address all questions and comments to Maria Dutarte ( or Tamás Bereczky (
Are you following the EATG 4 Women Portfolio? Tue, 02 Jan 2018 21:52:26 +0000

EATG has been operating the EATG4WOMEN portfolio for only a few months, and it is already one of the most successful initiatives.

Join the Facebook group for the latest updates.


EATG Christmas Newsletter Wed, 27 Dec 2017 21:40:48 +0000 The year may be ending, the fight against HIV is not

What a tumultuous year 2017 has been! EATG has grown again, more projects than ever, another STEP-UP cohort graduated, we have produced a series of amazing webinars, and there will be even more in 2018! Executive Director Koen Block wishes you all a happy holiday season and a good start into the New Year.

Click here to read the EATG Christmas Newsletter, highlighting the major achievements of the organisation in 2017.

Your feedback matters: Post-Testing Week 2017 evaluation survey Mon, 25 Dec 2017 17:48:31 +0000 If you haven’t already, you are kindly invited to fill out the Post-European HIV-Hepatitis Testing Week 2017 evaluation survey.

Even if you did NOT do Testing Week activities, you are still invited to fill out the first portion of the survey!

Deadline for completion of the survey is 31 January 2018.

The survey can be accessed here.

For more information, click here.

GNP+ survey: State of PLHIV around the world: back to basics Thu, 21 Dec 2017 03:37:47 +0000 People living with HIV around the world: GNP+ wants to hear from you!

The Global Network of People living with HIV (GNP+) is collecting input from people living with HIV (PLHIV) around the world to highlight the state of PLHIV and to shape the GNP+ strategic plan for 2018-2022.

You are invited to complete a survey available in English, Spanish, French and Russian here.

MSF challenges Gilead’s patent application for hepatitis C combination treatment in China, to bring down prices Thu, 21 Dec 2017 03:32:21 +0000 Gilead recently launched one of these drugs for $100/pill in China

Geneva, 18 December 2017 – The international medical humanitarian organisation, Médecins Sans Frontières (MSF) has filed a legal patent challenge in China against US pharmaceutical corporation Gilead’s patent application for the combination of two crucial oral hepatitis C medicines, sofosbuvir and velpatasvir. This combination is the first direct-acting antiviral (DAA) treatment to be registered for use against all genotypes of the disease. Rejection of patents for this combination would pave the way towards the availability of affordable generic versions of this treatment that millions of people need in China and around the world.

The legal challenge, filed at the China State Intellectual Property Office (SIPO), offers technical grounds to show that the drug combination does not merit patenting under China’s Patents Law. If granted, the unjustified patent on the combination of these two medicines would give Gilead a monopoly over production and sale of the treatment in China. It would block Chinese generic companies from producing affordable versions, for use in China and globally.

“Despite the deadly toll the hepatitis C epidemic takes, pharmaceutical corporations like Gilead still have far too much control over who can access these lifesaving medicines, which is ultimately costing people their lives,” said Mickael Le Paih, Head of Mission for MSF in Cambodia. “In some high-burden countries where we work, hepatitis C treatment is not readily available due to high prices. Leveraging China’s ability to produce more affordable generics could significantly increase competition and bring prices down further, allowing many countries to get treatment to more people, faster.”

Globally, an estimated 71 million people have chronic hepatitis C infection and, without access to treatment, nearly 400,000 people die each year from its complications. With nearly nine million people infected, China has the highest prevalence of hepatitis C in the world. Yet access to these medicines that have proven to be a major breakthrough for the treatment of hepatitis C remains limited in China and many other middle-income countries due to exorbitant pricing.

In China, Gilead recently announced the market launch of sofosbuvir at a prohibitive price of US$8,937 per treatment course, or around $100 per pill. The price of the sofosbuvir and velpatasvir combination in China is still not known, as the treatment is not yet registered or available in the country; but using sofosbuvir at Gilead’s price, in combination with another DAA, daclatasvir, would cost about $12,000 for the 12-week treatment. Generic competition has driven the price of this same treatment combination to as low as $120 per 12-week treatment in countries where patent barriers do not exist.

“With this patent challenge, MSF hopes to prevent Gilead from getting unmerited patent rights on the combination of sofosbuvir and velpatasvir, which would allow them to charge unreasonably high prices,” said Yuanqiong Hu, Legal Advisor for MSF’s Access Campaign. “The world desperately needs more affordable sources of these essential hepatitis C medicines to save lives and contain this growing epidemic, and the best way to achieve this is to open the door widely to robust competition among generic producers.”

Gilead has applied for multiple patents in China for its hepatitis C medicines, and some of these are being opposed by other pharmaceutical companies and non-profit organisations based on similar grounds of being unmerited under China’s Patents Law. Since 2015, SIPO rejected two key patent applications for sofosbuvir in China. Gilead’s patent applications on sofosbuvir and its combinations have also been challenged in many other countries, including Brazil, India, Russia and the United States, as well as in the European Union. Some of the Gilead’s patent applications have been rejected in Argentina and Egypt.

MSF treats people with hepatitis C in 11 countries (Belarus, Ukraine, Pakistan, Uzbekistan, India, Myanmar, Cambodia, Uganda, Kenya, Mozambique and South Africa). Since 2015, MSF has provided DAA treatment to over 5,000 people with hepatitis C. Of those who have completed treatment to date, the overall cure rate – measured by ‘sustained viral response’ – is 94.9 per cent.

Information on currently available diagnostics and treatments for hepatitis C, including pricing and registration information from manufacturers of DAAs, can be found in MSF’s issue brief, Not Even Close.

Key populations platform in Ukraine established Fri, 15 Dec 2017 21:17:55 +0000

On 11 and 12 December, representatives of four populations at higher risk of HIV infection—people who inject drugs, sex workers, lesbian, gay, bisexual, transgender and intersex people and former prisoners—gathered in Kyiv, Ukraine, for the legal formalization of the National Platform for Key Communities and to agree on key priorities for advocacy and on how the platform will be managed and operated.

The platform’s priorities will include influencing policies and decision-making processes, the development of a package of HIV prevention services that respond to the needs of key populations and responding to discrimination.

The participants decided on the positioning, role and contributions of the platform in the national AIDS response, the implementation of a Fast-Track strategy and the form of an HIV prevention 100 days of action campaign. They also enthusiastically welcomed continued Dutch, UNAIDS and civil society collaboration and agreed on a unified strategic vision for the participation of civil society and the platform in key events, including the International AIDS Conference, to be held in Amsterdam, Netherlands, in 2018.

The three key advocacy areas for the platform will be:

  • The participation of communities in decision-making on health, an effective response to HIV and tuberculosis and the protection of human rights.
  • The provision of access to services for key groups focused on the needs of communities that are implemented by the communities and funded by national and local budgets.
  • The protection of rights and the prevention of discrimination.


“We will do our best to make the platform an effective advocacy instrument to help us to achieve our joint objectives and influence decision-making processes that affect our lives and health.”

Velta Parkhomenko, National Platform for Key Communities, Ukraine

“The Government of the Netherlands has been and will continue to support this community-led initiative to make the joint voice of key populations in Ukraine heard and taken into account in strategic decision-making at the national, regional and international levels.”

Monique Middelhoff, Ministry of Foreign Affairs, Netherlands

“The National Platform for Key Communities is a strong, transparent and self-regulated forum of community leaders and individuals with a deep understanding of advocacy and formulating joint positions and statements.”

Jacek Tyszko, UNAIDS Country Director, Ukraine

STEP-UP 2017 ends with a graduation ceremony Tue, 12 Dec 2017 22:59:35 +0000 On 7-10 December 2017 module 5 of the STEP-UP Training Academy took place in Warsaw. This was the last module of the very successful 2017 programme. At the graduation activists from Netherlands, Belgium, Italy, France, Malta, Turkey, Poland, Ireland, Russia, Belarus, Ukraine, Kazakhstan, Uzbekistan and Tajikistan received their certificate from EATG Executive Director Koen Block. Even though the 2017 programme has finished, we believe that this is not the end but just the beginning: We look forward to working with these aspiring activists in the future to improve the lives of people living with HIV in the WHO Europe region!

Providing STEP-UP graduates with the possibility to apply for a micro-grant for their local HIV, HCB or TB projects has been a tradition for the course. A number of excellent projects have already been implemented, and you can read more about the program and the results on the EATG Training Academy website.


Interview: He’s living and leading in Turkey with HIV Mon, 11 Dec 2017 22:59:34 +0000 Bob Leahy in conversation with Minas from Istanbul about the face of activism in Turkey and how Minas bravely burst onto the world stage in July 2017.

If you followed the International AIDS Conference in Paris this last summer, you might have read that community activists caused quite a stir. In particular they interrupted one plenary session and took over the stage. They danced, chanted and spoke about the impact U=U had on their lives. One of these activists was Minas, 36, from Istanbul. He’s tall, striking looking – and straight. His words were striking too – the fact that people with HIV have sex and the good news that U=U can bring them. It was a powerful moment, one of the highlights of the conference for all of us lucky enough to be on the stage with him. I caught up with him recently via WhatsApp.

Bob: Good to reconnect like this, my friend. Tell me what it’s like being out and poz in Turkey? Is it difficult?

Minas: Actually I am not open about my status because when I learned about my status the situation was worse because and I was in show business as an actor. And then That’s why I prefer to talk from the perspective of a community representative. But I think you can get the idea of how difficult being poz is here – you can easily lose your position or job or your family or wife or husband. That means that when I am talking on TV or for newspapers I don’t say directly that I am poz. Because I strongly believe that, what I have in my blood is not important for the others. This is non of their business.The important thing is what I am saying and what is scientific proof about what I am saying.

So nobody knows your status in Turkey except yourself?

Of course some people know -– few friends, my gf, some doctors of course.our clients, all the doctors, some family members and more. I mean I am sharing this information only with people who need to know. I am not asking anything about people’s sexual or health life. So why they need to know about my status?

Who was the first person you told then?

My girlfriend and then some friends and my brother

And your girlfriends’ reaction was?

I remember that she was afraid a bit and prejudiced

So how did you reassure her?

In the first 24 hours I devoured all the scientific information I could and Ihen I talked to her about this information. It was good for me because that was how I learned that knowing scientific information could make me strong. This is exactly how I am doing activism now.

So you read up on HIV? Can I ask how recently you were diagnosed Arda?

I will tell you something really interesting about my diagnosis – and it’s not a joke. I learned about my status on December 1st and my birthday is Dec 1st. It was 2009.

Tell me about that day then

It was a small hospital where one of my friends had a minor operation and when she needed blood I was killing time in the corridor. They asked for 0 rh+ type blood which is the same as mine. So I gave one unit of blood and they checked my blood and they found it.

What was your reaction?

A bit shocked, of course. I wasn’t totally unaware of HIV but the Doctor who told me about my results was a super bad person and also homophobic. Because she explain the results in very bad way with comment; I will gonne die in 10 years! Of course it was very old information and I am planning to visit her on my 11th years with HIV. I hope she can survive until that day. Because I will.

Did you immediately go on treatment?

Yes. My first CD4 count was 340 and my viral loaf was over 100,000. I started to take ART immediately. Truvada and Efavirenz was the best option for the moment; there weren’t any symptoms.

I see. When did you first hear about U=U then?

I was aware of HPTN052 when I first saw a report about the campaign at the very beginning. That’s when I wrote to Bruce to be a partner organization on behalf of the Turkish community. There were only five or six organizations in then.

And then you went to the International AIDS conference in Paris. Tell me about that.

Paris was an amazing experience for me even if it wasn’t my first conference. I want to share something very special about Paris, though. While we were all in the poz lounge after the U=U press conference with wonderful activists like Christian Hui, Bruce, Charles King and lots of others they talked about the planned demonstration next day. Charles asked me if I wanted to talk at that. So I said yes but then I told Bruce “this is your campaign, you are the star. Why am I the first? You should talk.” I’ll never forgot his wonderful answer. He said ‘You know I come from the States and I talk everywhere. I think you should talk because you are doing really well, and this is the perfect message for people”. This moment was more emotional than being on the stage next day. It was just perfect!

So the next day, I know what happened but I want to hear it in your own words. Do you remember what you said?

Every word. For me two most important parts were first, being poz is not easy in Turkey and the EECA region. Secondly “one day, I can be a father without fear of putting my girlfriend at risk” I don’t want to be a father but people needed to know that I CAN BE! Before Paris I’d been on the stage about 500 times but being on the stage at Paris and talking about something like U=U felt like changing the world. U=U is revolutionary. I am pretty sure that, even after 20 years, people who were there will remember that moment. When we left the stage together I saw some people crying. Some people stopped and gave me huge hugs with lots of emotional words…

Right, I think Paris was a highly important milestone/turning point – personally for me and for the U=U campaign. Were you nervous? Emotional? Happy though?

Yes I was nervous but ıf I decide to do something I will do it generally, that’s me, But yes, I was very emotional before and after the demo.

Me too.

Yes I remember that

I think we all cried. We all went out to dinner afterwards and I cried there too. It was such a momentous day! Anyway, let’s talk about your work in Turkey. You lead an AIDS Service Organization there?

Ok, there is a parallel connection with U=U. I have been working on HIV about nine years but the most important moment was two years ago. I was really tired and sick of this old and very pessimistic HIV language and I decided to go for a new NGO.

You started one up?

Honesty, the only thing I had was self-power and some international networks. I founded Red Ribbon İstanbul Association. Currently I am its chairperson and I am proud to tell you that in just 18 months this organization is one the most respected NGO’s in Turkey. In only 18 months we had Turkey’s first Red Ribbon Party, a Red Ribbon Gala and published Turkey’s first joint statement together with highly respected doctor organizations, which included U=U. I believe this is really huge success because it means U=U is officially approved by most restpectful Doctors This kind of thing happening for the for first time in Turkey’s HIV story. I am really proud of myself about that.

Good. Tell me what it was intended to tell people.

Red Ribbon Istanbul is an organization that aims to raise awareness and provide information on HIV, focusing mainly on people living in İstanbul in various segments of the population. We strongly believe that the most effective tool to prevent the spread of HIV is knowledge that is scientifically-proven and data-supported. With the know-how of our members who come from various fields, including law, health, entertainment and politics, we aim to provide precise information about HIV to all segments of society, using clear and easy-to-understand language.

Tell me about the HIV epidemic in Turkey then.

Turkey is still a low epidemic country but numbers are crazily increasing; the number of cases is about 15, 000 since 1985. Approximately 9,000 people are taking ART. According to official data most are heterosexual but our data is showing HIV is a real risk among the young men who have sex with men (MSM) population.

What about infection through injection drug use?

In my experience it’s not a real problem but chemsex is a huge problem. I mean really huge.

Same here in North America. It’s amazing to be able to talk to you again about so many important things and great to reconnect with you. Thank you for talking to me, Arda, and to

Thank you for your support again and for what you are doing for people living with HIV. I’m so happy and proud to know you.

Registration for AIDS 2018 is now open Wed, 06 Dec 2017 22:55:52 +0000 World AIDS Day marked the opening of registration for the 22nd International AIDS Conference (AIDS 2018), taking place on 23-27 July 2018 in Amsterdam, the Netherlands, under the theme Breaking Barriers Building Bridges.

The International AIDS Conference is the largest gathering on any global health issue in the world. It has been a key focal point to intensify political, scientific and financial commitments that has been at the centre of some of the most groundbreaking milestones in history. Amsterdam will be no exception, gathering more than 15,000 global leaders, policy makers, researchers and advocates from more than 160 countries to present and discuss the year’s breaking science and most pressing health challenges, with a focus on tangible actions to move forward.

Register here

Turkey’s joint declaration for World AIDS Day Tue, 05 Dec 2017 22:59:33 +0000 HIV has changed. Have we?

On World AIDS Day Red Ribbon Istanbul released a joint declaration, signed by the most prominent Turkish medical associations and a number of civil society organizations. The statement explicitly mentions the scientific consensus U=U (Undetectable = Untransmittable) and PrEP as an effective HIV prevention tool.

The declaration can be accessed here.

The press release can be read here.

EATG4WOMEN – EATG launches new website and project! Mon, 04 Dec 2017 22:59:02 +0000 EATG4Women has a new website!!!

On this year’s day of remembrance, World AIDS Day, EATG is choosing to launch a new website ( dedicated to the EATG4Women portfolio in an effort to highlight the importance of women in the fight against HIV/AIDS.

EATG4Women is the dedicated portfolio to women living with or affected by HIV. This year (2017 – 2018) EATG4Women has undertaken a project under the title “Metrodora” which aims to examine women’s involvement in research and clinical trials.

EATG is taking the opportunity to launch a dedicated website for this purpose. In there you can find all relevant information about the portfolio, the work we are currently doing, our news and updates but also information about Metrodora project.

EATG4Women is also launching an online survey on contraception and women living with HIV that you can find here: The survey will run throughout December 2017 and aims to identify possible gaps in contraception coverage and the access to contraception for women living with HIV. It will be available in English, Russian, Romanian, Greek, Croatian, Spanish, Italian, French, German, Portuguese.

We would also like to take this opportunity to remind you of:

EATG’s facebook page which you can follow and get updates about our work

And EATG4Women facebook group you can join and where we will be posting updates about the Metrodora project among other news.

Contact details:

EATG Office:

Mariana Vicente – Metrodora Project Coordinator:

Christina Antoniadi – EATG4Women Portfolio Coordinator:

For press inquiries: Tamas Bereczky – Communications Coordinator:

Argentina: Sofosbuvir patent rejected Mon, 04 Dec 2017 20:35:24 +0000 Hepatitis C: In Argentina INPI rejected a key patent on sofosbuvir

Argentina has made an important step forward to protect local production of generics of an essential medicine to treat Hepatitis C. This brings significant advantages for Public Programs which procure the medicines.

Buenos Aires, December 4, 2017. In Argentina, the INPI (National Institute of Industrial Property) rejected GILEAD PHARMASSET LLC patent application on Sofosbuvir prodrug, an essential medicine to treat HepC.

The resolution PN 066898 of INPI that rejects the patent, is based on the same arguments filed by FGEP in the oppositions. In May, 2015, FGEP filed an opposition in which we highlighted Gilead does not comply with the legal requirements of Argentine patent Law. The article 4 requires novelty, inventive step and industrial application. In addition, the Law in articles 12 and 20 requires the invention must be described in the application in a sufficiently clear and complete manner. All requirements that were not met by Gilead application.

GEP and other CSOs stated and proved Gilead intended to claim a patent over an active ingredient of an already known product, that according to the regulation it is not patentable. Sofosbuvir was developed based on knowledge already known and the scientific techniques used to develop Sofosbuvir are routine for chemical-pharmaceutical practices. These arguments were used in the INPI resolution to reject  the patent seek by Gilead.

 In Argentina there are three generic local versions that obtained registration from ANMAT, the Regulatory Authority. “These generics guarantee price competition in the tenders of the Ministry of Health and they should be protected”, highlighted Lorena Di Giano, Executive Director of FGEP, who is working in the filling as a Lawyer and Agent of Industrial Property.

The exorbitant price of the medicines for HepC is the main barrier for access, many people are in waiting lists to get the treatment. Some of them may not make it. This is unacceptable”, stated Pablo García, President of FGEP.

 The file of the application on Sofosbuvir prodrug was also opposed by local producers who  in spite of this application and others, invested to develop the product and obtained ANMAT registration.

 Today there is a public tender opened by the Ministry of Health in which some of the local producers have offered significantly lower prices than Gilead. The rejection of this patent is a step forward to protect local production and procurement of generics” added Lorena Di Giano.

 In the first purchase of DAAs made by the Ministry of Health in March 2015, the Argentinian company Richmond offered a 4 times lower price than Gilead who intended to get several patents on Sofosbuvir, most of them are pending.

We hope the pending patents over Sofosbuvir are rejected by INPI soon. The unsolved patent applications create monopolies and insecurity in the market to produce generics”, said José María Di Bello, Secretary of FGEP.

Gilead intends to illegally obtain the rights on Sofosbuvir through patent applications that do not meet the requirements of the law. The treatment for Sofosbuvir combined with other DAAs  has a proven effectiveness of 95% in patients with HepC.

 In Argentina, it is estimated that there are 400.000 people living with HepC, many of them are in an advanced stage of the illness and do not have access to the treatment due to the high prices. The existence of generics has a direct impact on the Ministry of Health Budget and allows more people to obtain the cure.

FGEP Campaign to promote Universal Access to Hepatitis C treatment.

People living with HIV can live longer, but urgently need improved care to achieve better health outcomes and quality of life Wed, 29 Nov 2017 20:43:48 +0000

Brussels, 29 November 2017: Experts unveiled a set of recommendations on Wednesday to address health problems facing people living with HIV. Treatments are helping people with HIV live long lives, but they face higher risk than others of serious illnesses – from cancer to heart disease to depression.

As people living with HIV require access to a range of health services beyond just their HIV treatment, a coordinated and personalised approach to long-term HIV care is needed, according to the HIV Outcome recommendations, which were unveiled at an event at the European Parliament.

“There is huge room for improvement” said Nikos Dedes, Chair of the European AIDS Treatment Group (EATG) and Co-Chair of the HIV Outcomes Steering Group. “It is great that people living with HIV can live nearly as long as anyone else these days because of new treatments, but there are complicated health problems that are being ignored. The HIV Outcomes initiative has put together a list of suggestions that has the potential to improve the lives of Europeans who live with HIV.”

In a timely reminder ahead of World AIDS Day on Friday, 1 December, the HIV Outcomes initiative highlights that the advent of modern antiretroviral therapies (ART) has transformed the lives of people living with HIV. For those diagnosed and treated early, it is now a chronic, rather than a fatal, condition. However, this is no guarantee of good health outcomes or quality of life; further effort is needed to develop effective, lifelong approaches to the long-term treatment and care of people living with HIV.

To address these needs, the HIV Outcomes initiative has engaged in a year-long multi-stakeholder process to develop a series of five detailed policy recommendations. These call for an integrated and patient-centred approach to long-term HIV care, which should include services for the prevention, treatment and management of other health conditions (comorbidities), services for mental health conditions, personalised care plans, and advice and support on sexual and reproductive health. Other recommendations call for monitoring of how health systems currently respond to the long-term health challenges faced by people living with HIV as well as efforts to combat stigma and discrimination within health systems.


  1. Adopt an integrated, outcomes-focused, and patient-centred approach to long-term care
  2. Expand national monitoring of long-term care and outcomes
  3. Fund studies to provide information on the long-term health of people living with HIV
  4. Combat stigma and discrimination within health systems.
  5. Upscale involvement of the HIV community in priority setting at country level

The three Member of the European Parliament (MEPs) supporting the event meeting, Christofer Fjellner (European People’s Party, EPP), Eva Kaili (Socialists and Democrats, S&D) and Gesine Meissner (Alliance for Liberals and Democrats in Europe, ALDE), agreed, “Having addressed the issue of longevity, society now needs to help people with HIV to retain good health and lead rewarding lives. As representatives of the European Parliament’s leading political groups, we fully support the aims of this initiative.

The next step is to “road test” the recommendations at national level in two countries – Italy and Sweden – during 2018. Both have already demonstrated their commitment to people living with HIV; Italy has published a ‘White Book’ on the chronic care model for HIV, while Sweden is the first country to achieve the UNAIDs ‘90-90-90’ targets[1].

The learnings and best practice generated on a national level will ultimately be reported at a future event in the European Parliament in 2018 and should provide further refinements to efforts to improve the long-term health outcomes and quality of life of people living with HIV. It is time to expand our ambitions for the health and well-being of people living with HIV beyond just viral suppression.

The recommendations are available here

Infographics summarising the recommendations are available here and here

The event agenda is available here


The HIV Outcomes initiative reflects a widespread recognition among experts that important aspects of the health and social well-being of people living with HIV (PLHIV) receive insufficient attention from policy makers and healthcare providers. The initiative aims to make these aspects central to the overall HIV response. Governments and health systems must now respond to the fact that PLHIV are living longer and provide treatment and care that will enable PLHIV to remain in good health as they grow older and lead successful, productive and rewarding lives. The initiative is sponsored by Gilead Sciences and ViiV Healthcare.

HIV Outcomes Presidents

  • John Bowis, OBE, former UK Health Minister and MEP
  • Marc Danzon, former Director of the WHO Regional Office for Europe

HIV Outcomes Steering Group

  • AIDS Action Europe: represented by Sini Pasanen
  • AFEW International: represented by Anke van Dam
  • East Europe & Central Asia Union of PLWH (ECUO): represented by Vladimir Zhovtyak
  • European AIDS Treatment Group (EATG): represented by Mario Cascio
  • Jane Anderson: Homerton University Hospital NHS Foundation Trust, London
  • Georg Behrens: Hannover Medical School and German AIDS Society
  • Antonella d’Arminio Monforte: University of Milan
  • Nikos Dedes: Positive Voice
  • Jeffrey Lazarus: ISGlobal, Hospital Clinic, University of Barcelona
  • Richard Stranz: AIDES
  • Industry represented by: Annick Manuel (Gilead Sciences) and Evelyn Schoedl (ViiV Healthcare)
  • European Centre for Disease Prevention and Control (ECDC) (observer): represented by Teymur Noori

[1] The UNAIDS 90-90-90 target aim to achieve the following by 2020: 90% of all people living with HIV will know their HIV status, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy, and 90% of all people receiving antiretroviral therapy will have viral suppression.

‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives. Mon, 27 Nov 2017 22:50:34 +0000 Last year, Chris Kimmenez and his wife asked their doctors a simple question. Could Chris, who has been HIV positive since 1989 but keeps the virus in check through medication, transmit it sexually to Paula?

They were pretty sure they knew the answer. Married for more than 30 years, they had not always practiced safe sex, but Paula showed no signs of having the virus.

Their physicians were less certain. “They had a conversation, and they did some research on it,” Kimmenez said. “They came back to us and said there may still be a risk, but we’re comfortable enough” that unprotected sex is safe.

“We knew that all along,” said Kimmenez, 56, who works with ex-offenders in Philadelphia.

Simple acknowledgments like that one, spoken quietly in the privacy of doctors’ offices, mark the arrival of a historic moment in the history of HIV: Medical authorities are publicly agreeing that people with undetectable viral loads cannot transmit the virus that causes AIDS.

The policy change has profound implications for the way people view HIV. The change promises not just unprotected sex for couples like Kimmenez and his wife, but also reduced stigma for the 1.2 million Americans living with HIV. The policy change also offers the hope that more people will be tested and begin treatment if they are found to have the virus rather than live in denial.

“There was something in me that said I’m damaged and I made a mistake, and people see it and I’m a danger,” said Mark S. King, 56, a writer and activist who tested positive for HIV in 1985. But now, treatment has fully suppressed the virus. “When I finally internalized this message . . . something suddenly lifted off of me that is hard to describe. It was almost as if someone wiped me clean. I no longer feel like this diseased pariah.”

Once considered a death sentence, HIV infection can now be managed via medication, much like chronic diseases such as diabetes, and people with the virus live full lives. The rate of new infections in the United States dropped by 10 percent from 2010 to 37,600 in 2014, according to the U.S. Centers for Disease Control and Prevention. Fewer than 7,000 people died of HIV/AIDS that year.

In July, Anthony S. Fauci, head of the National Institute of Allergy and Infectious Diseases and one of the world’s leading authorities on HIV, publicly agreed at an international conference that people with undetectable viral loads in their blood cannot transmit the virus.

On Sept. 27, the CDC followed, releasing a letter that said people who take medication daily “and achieve and maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to an HIV-negative partner.”

The influential British medical journal the Lancet HIV endorsed the idea in an editorial this month. All told, more than 500 organizations in 67 countries now agree, according to Bruce Richman, who is leading the “Undetectable = Untransmittable” (U=U) campaign credited with beginning to change public perception of HIV transmissibility.

Like many developments in the four-decade history of HIV, this one has been slow to gain acceptance among mainstream health-care providers. Many are not aware of it or must unlearn the habit of drilling safe-sex lessons into patients, as they have been doing almost since the AIDS epidemic began. HIV-positive people also must alter deeply ingrained beliefs that nothing good can come of revealing their status.

The change in philosophy also has sparked concerns, for which there is some evidence, that more condomless sex will lead to an increase in other sexually transmitted infections. And experts acknowledge that a few people whose viral load is not truly suppressed will eventually transmit HIV to others.

Laws in many states also are out of date. Many still criminalize the failure to reveal HIV status to a sex partner, even when there is no danger of transmissibility.

But on balance, authorities said, the agreement that people with HIV can prevent sexual transmission by taking a single pill each day is nothing less than revolutionary.

“Nothing is completely risk-free,” Fauci said in an interview. “What the community feels is that all of the good that will come from the lack of social stigmatization” is worth the risk. “This means a lot to them. This has a lot to do with their self-worth, their identity.”

An undetectable viral load is defined as fewer than 200 copies of the virus in a milliliter of blood. Generally, people with HIV should maintain that level or a lower level for six months before beginning to consider themselves incapable of transmitting the virus sexually.

Many who faithfully take antiretroviral medication and lead healthy lifestyles can bring their viral loads considerably lower, to 50 or even 25 copies.

But progress raises other questions, said Jonathan Mermin, director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. What if a person forgets to take medication for one day? What about two, or more? How long after resuming therapy should someone wait before once again considering himself or herself incapable of transmitting the virus? And what about people who go above and below the 200-copy threshold over time? Studies show that to be the case for about 10 percent of the people with HIV, Mermin said.

As yet, there are no evidence-based answers to these questions, he said. “The public-health challenge now is moving from theory to implementation,” he said. “Many questions arise following the information that when a person with HIV has an undetectable viral load, he has effectively no risk of transmitting the virus.”

In 2008, Swiss experts announced that those with undetectable levels of HIV could not transmit HIV through sex. But the world was not ready to hear the message then.

Starting in 2011, three large studies confirmed the idea, tracking more than 75,000 vaginal and anal condomless sex acts without finding a single HIV transmission to an HIV-negative partner from someone whose viral load was undetectable. The initial 2011 study was named “breakthrough of the year” by Science magazine.

Now the challenge is to get the message out to HIV-positive people, caregivers and the public. And that process has been slow.

“I would tell everyone about this, friends and family and people I wanted to date, and I was coming across so much resistance, because major institutions were saying this is wrong,” Richman said.

He launched U=U last year, initially a lonely and sometimes controversial campaign to let the world know something that many people with HIV had concluded for themselves. His breakthrough moment came in August 2016 when New York City’s health department signed on. Soon, other cities and organizations were joining.

Still, the message is moving mainly from people with HIV to health authorities and policymakers, rather than in the other direction, Richman said.

“This is a radical challenge to the status quo and to 35 years of HIV and fear of people living with HIV,” Richman said.

Brigitte Charbonneau, 71, of Ottawa, found out this year that she could not transmit the virus after 23 years of being HIV positive. “I thought, ‘My God, I’ve been living with my man for 20 years, and we’ve been using condoms,’ ” the retired hairdresser recalled. “And I phoned him right that afternoon.”

Jennifer Vaughan of Watsonville, Calif., vividly remembers the moment she learned she could not transmit the virus to her boyfriend. The mother of three tested positive in February 2016 after she became critically ill with what was finally determined to be AIDS. HIV was not among the possibilities she or her doctors considered, until a blood test revealed the virus. She thinks she was infected by a previous boyfriend with a history of intravenous drug use.

Vaughan attended a speech Richman gave and was talking with him in a parking lot outside a Starbucks.

“I’ll never forget him saying those words, ‘You can’t transmit the virus if you’re undetectable,’ ” the 47-year-old substitute teacher recalled. “And I said, ‘Wait, what?’

“It was like the sky opened. Are you kidding? There’s, like, zero risk? I don’t feel like I’m a threat anymore. I don’t feel like I’m dirty. I don’t feel like I’m a dangerous person.”

By Lenny Bernstein

Women and HIV – Christina Antoniadi in Pan-European Networks: Health Fri, 24 Nov 2017 12:07:33 +0000 Working together with the Women’s Group of EATG and after talking to a number of women living with or affected by HIV, Christina Antoniadi explains why it is important to promote the meaningful and sustainable involvement of women in HIV research and development.

Click here for the publication, and turn to page 32:


MEP gets HIV test, calls for focus on key populations, including MSM and trans people Wed, 22 Nov 2017 22:59:17 +0000 This morning, Co-President of the LGBTI Intergroup Daniele Viotti MEP got an HIV test in the framework of the European HIV/hepatitis testing week.

The week has officially been endorsed by the European Commission and the European Parliament intergroup on LGBTI Rights.

Daniele Viotti MEP reacted: “HIV/AIDS is still a major public health concern, even though we have the science and the experience to end it as a threat. This is why I am calling for strong and sustained political engagement of the Commission to support evidence-based interventions at national level in order to get people diagnosed and linked to care early, and to access relevant prevention tools to reduce new infections.”

“Particularly, we need to increase HIV testing amongst the groups most affected by the epidemic, including homo- & bisexual men, other men who have sex with men (MSM), transgender people and other groups.”

Pierre Mayeur, President of Ex Aequo, the Belgium based gay organisation offering the free test in the Parliament, commented: “HIV testing should be key in the public response to the HIV/AIDS epidemic. The sooner a person knows their status, the sooner they will be treated and they will be less at risk of transmitting the virus since an HIV positive person following a treatment can no longer transmit the virus. Many local LGBTI organisations across Europe offer such services.”

“Talking to a general practitioner about sexual health remains difficult these days for most MSM. LGBTI NGOs are often the closest and most natural partner to talk to and people know they will not be judged nor frowned upon.”

New global commitment to end TB Tue, 21 Nov 2017 22:55:01 +0000 Over 120 national delegations that participated in the first Global Ministerial Conference on TB adopted the Moscow Declaration to End TB.

17 November 2017 | MOSCOW/GENEVA Today 75 ministers agreed to take urgent action to end tuberculosis (TB) by 2030. The announcement came at the first WHO Global Ministerial Conference on Ending Tuberculosis in the Sustainable Development Era: A Multisectoral Response, which brought together delegates from 114 countries in Moscow. President Vladimir Putin of the Russian Federation opened the Conference, together with Amina J Mohammed, UN Deputy Secretary General, and Dr Tedros Adhanom Ghebreyesus, WHO Director-General.

“Today marks a critical landmark in the fight to end TB,” said Dr Tedros. “It signals a long overdue global commitment to stop the death and suffering caused by this ancient killer.”

The Moscow Declaration to End TB is a promise to increase multisectoral action as well as track progress, and build accountability. It will also inform the first UN General Assembly High-Level Meeting on TB in 2018, which will seek further commitments from heads of state.

Global efforts to combat TB have saved an estimated 53 million lives since 2000 and reduced the TB mortality rate by 37%. However, progress in many countries has stalled, global targets are off-track, and persistent gaps remain in TB care and prevention.

As a result, TB still kills more people than any other infectious disease. There are major problems associated with antimicrobial resistance, and it is the leading killer of people with HIV.

“One of the main problems has been a lack of political will and inadequate investment in fighting TB,” added Dr Tedros. “Today’s declaration must go hand-in-hand with increased investment.”

The meeting was attended by ministers and country delegations, as well as representatives of civil society and international organizations, scientists, and researchers. More than 1000 participants took part in the two-day conference which resulted in collective commitment to ramp up action on four fronts:

  • Move rapidly to achieve universal health coverage by strengthening health systems and improving access to people-centered TB prevention and care, ensuring no one is left behind.
  • Mobilize sufficient and sustainable financing through increased domestic and international investments to close gaps in implementation and research.
  • Advance research and development of new tools to diagnose, treat, and prevent TB.
  • Build accountability through a framework to track and review progress on ending TB, including multisectoral approaches.

Ministers also promised to minimize the risk and spread of drug resistance and do more to engage people and communities affected by, and at risk of, TB.

The Russian Federation, host of the first Ministerial Conference to End TB, welcomed the Moscow Declaration. “Tuberculosis is a complex, multi-sectoral problem that requires a systemic and highly coordinated response to address the conditions which drive the disease,” said Professor Veronika Skvortsova, Minister of Health, Russian Federation. “The accountability framework we have agreed to develop marks a new beginning, and, with WHO’s support to coordinate and track progress, we expect the Moscow Declaration to lead us forward to the high-level meeting of the UN General Assembly in 2018.”

Access the WHO Global Ministerial Conference webpage here.

TB: Governments given deadline to increase testing and treatment Tue, 21 Nov 2017 22:50:55 +0000 Petition signed by more than 30,000 people from 120 countries presented to head of WHO and Ministers of Health.

Moscow/Geneva, 15 November 2017 – Ahead of the first-ever Global Ministerial Conference on Ending TB in Moscow, the international medical humanitarian organisation Médecins Sans Frontières (MSF) and the Stop TB Partnership called for countries with high burdens of tuberculosis (TB) to implement the latest international treatment and testing standards by World TB Day, 24 March 2018.

TB remains the world’s top infectious disease killer, with 1.7 million deaths in 2016. According to the latest World Health Organization (WHO) Global TB report, progress in diagnosing and treating all forms of TB is stalling in most countries: more than 4.1 million people with TB remained undiagnosed or unreported in 2016, and only one in five people with multidrug-resistant (MDR-TB) were started on treatment. Of those people, just over half were cured.

“Why do we continue to remain out of step when it comes to testing people for TB, when it’s the critical first step to treating this curable disease and preventing its spread?” said Dr. Francis Varaine, TB Medical Advisor at MSF. “Governments urgently need to step up, to stop people from needlessly dying of TB.”

According to a survey in the third edition of ‘Out of Step’, a joint report by MSF and the Stop TB Partnership that reviews TB policies and practices in 29 countries – which account for nearly three-quarters of the global TB burden – 40 percent of people with TB remain undiagnosed. Only seven of the countries* have made Xpert MTB/RIF, a rapid molecular test, widely available for diagnosing TB. Newer medicines and regimens for treating drug-resistant (DR-TB) have demonstrated better outcomes than today’s standard regimens, which cure just half of people with MDR-TB and only 28% of people with the even more deadly extensively drug-resistant (XDR-TB). Seventy-nine percent of countries surveyed include the newer drug bedaquiline in their national guidelines, and 62% include delamanid**, but globally, less than five percent of people who could have benefitted had access to these drugs in 2016.

This week, MSF and the Stop TB partnership released the report ‘Out of Step in Eastern Europe and Central Asia’ (EECA), presenting the results of an eight-country*** survey of national TB policies and practices. Among the countries surveyed, 75% have adopted a policy to use rapid molecular testing instead of older, slower testing methods, yet only half of those countries are actually using the test widely. An estimated 46,000 people with DR-TB in the EECA region went undiagnosed in 2015.

“Despite its deadly toll, most countries lag behind in implementing the existing and new tools that are available to tackle TB,” said Lucica Ditiu, Executive Director of the Stop TB Partnership. “The WHO Global Ministerial Conference is the first step for concrete, bold and measurable commitments by ministers of health towards a strong accountability framework for heads of state and governments during the UN High Level meeting on TB.”

At the Global Ministerial Conference this week, Mariam Avanesova, who was treated for MDR-TB in Armenia in 2010-2012 and represents TBpeople, the Eurasian network of people with TB experience, will hand over a petition to WHO’s Director-General, Dr. Tedros Ghebreyesus. The #StepUpforTB petition is an urgent call for health ministers in key TB-affected countries to get their TB policies and practices in line with international standards, as defined by WHO, including testing and treatment of TB and its drug-resistant forms. Initiated by MSF and the Stop TB partnership, the petition has been signed by more than 30,000 people from 120 countries united with people affected by TB.

“After being cured of MDR-TB, I decided to continue working in this area because I find it unacceptable that people are dying because either their diagnosis was too late and the drugs didn’t work, or they simply quit because the side effects from 20 tablets a day for two years were too much,” said Avanesova. “I really want to appeal to all governments to step up to make timely TB testing and treatment accessible to all people who need it. Urgent action on the ground is what I’m hoping to see come out of this conference.”


* Armenia, Belarus, Brazil, Georgia, South Africa, Swaziland, and Zimbabwe

** WHO will carry out a review of emerging evidence on the use of delamanid in early 2018.

*** Armenia, Belarus, Georgia, Kazakhstan, Kyrgyzstan, Russian Federation, Tajikistan and Ukraine

MSF is an independent international medical humanitarian organisation that delivers medical care to people affected by armed conflicts, epidemics, natural disasters and exclusion from health care. Founded in 1971, MSF has operations in over 60 countries today. MSF has been treating people with TB for 30 years. In 2016, MSF treated more than 20,000 people with TB, including 2,700 people with multi-drug-resistant TB (MDR-TB).

The Stop TB Partnership and its 1,600 partners are a collective force that is transforming the fight against TB in more than 110 countries.

Reading material:

Out of Step: TB policies in 29 countries, 3rd Ed. (2017)

Out of Step in Eastern Europe and Central Asia (EECA)

Ending tuberculosis starts in Moscow Tue, 21 Nov 2017 22:45:35 +0000 A meeting of the world’s health ministers in Moscow this week could prove to be a pivotal moment on the road to ending tuberculosis.

November 16, 2017 – A meeting of the world’s health ministers in Moscow this week could prove to be a pivotal moment on the road to ending tuberculosis (TB).

A curable infectious disease, TB has recently dislodged HIV/AIDS as the world’s most deadly infectious disease, taking some 1.7 million lives and affecting another 10 million each year.

Clearly, the world is lagging in fighting tuberculosis, a largely curable disease that accounts for so many preventable deaths and infections.

In the case of  HIV/AIDS, early testing and a commitment to research resulting in a wide range of effective antiretroviral drugs have transformed the disease from a death sentence to a manageable condition. Some 19.5 million people are currently living with HIV and these efforts have saved millions of lives.

Rates of HIV infection have been declining in many countries for some years now with the notable exception of Eastern Europe and Central Asia, which is home to the fastest growing rates in the world. Russia and Ukraine account for the vast majority.

In Russia alone, it is estimated that over a million people are living with HIV compared to around 250 000 a decade ago.

The TB world is confronting the many challenges posed by the most common forms of the disease and the rapid growth of Multidrug Resistant TB. However, the highest rates of TB in the world are found in Eastern Europe and Central Asia.

Nine of the 12 countries in this region are on the World Health Organization’s global list of Multidrug Resistant Tuberculosis (MDR-TB) high burden countries. Two-thirds of the region’s MDR-TB burden is in the Russian Federation and Ukraine.

The statistics are frightening. Over 20 percent of all new cases coming for re- treatment – in Eastern Europe and Central Asia are Multidrug Resistant and the number of people with drug resistant TB in the region is increasing by five percent each year.

Across all 12 Eastern Europe and Central Asian countries, 30 percent of people estimated to have drug-resistant TB are not being diagnosed.

New drugs like Bedaquiline are only reaching three percent of all people living with MDR-TB in the region, and the number of new cases associated with an HIV infection is also rapidly increasing.

Under these circumstances, many observers see the World Health Organisation´s (WHO) noble deadline to eliminate TB by 2030 as precarious unless some major steps are taken to dramatically turn around decades of underinvestment in research and development.

Many strains of MDR TB are resistant to some — or nearly all — existing drugs. These strains kill 200,000 people annually. TB treatment is long, painful and in Eastern Europe and Central Asia results in a cure in only 50 percent of cases.

Treatment for a typical case of drug-sensitive TB lasts six months, while drug-resistant TB must be treated for nine to 24 months. The methods are outdated, using old drugs with severe side effects and curing only 54 percent of patients. If nothing changes, a projected 75 million people will die from TB by 2050.

Less than a third of funding required to develop new drugs is invested annually. The world’s only TB vaccine, now 90 years old, has failed to halt the global epidemic. TB vaccine research is grossly underfunded even though a vaccine for adolescents and adults would be the single most cost-effective solution to help end the epidemic. Today we continue to fight the world’s largest infectious-disease epidemic using antiquated diagnostics and treatment.

TB drug development lags far behind drug development for other priority pathogens, with only eight new antibiotics currently in development, compared to 42 antibiotics and biologicals in clinical development for other priority pathogens. Many leading pharmaceutical companies have withdrawn altogether from TB drug research.

Initiatives such as The Life Prize being announced this week could be the kind of breakthrough that will change the stagnant TB research and development status quo.

Formed by a coalition of global health organisations, The Life Prize’s aim is to develop a single affordable and accessible regimen that will cure all forms of TB within one month.

The Life Prize will incentivise and reward scientists to bring promising new TB drugs through the drug development pipeline.

Research funding initiatives of this kind will need sustained political commitment. It is promising that in its early days, the Life Prize has attracted strong support from the BRICS nations.

New agreements between Russian and international pharmaceutical companies to manufacture Multidrug TB drugs such as Delamanid and Bedaquiline are also encouraging.

But a potential new regime of TB science will also need to be matched by effective implementation on the ground.

That will mean some fundamental changes and reforms in the way that TB care is delivered in many parts of the world, including in Eastern Europe and Central Asia  where TB care remains largely hospital-based rather than decentralized to primary health care structures.

How to fund and implement those changes while also  driving the search for new diagnostic tools, drugs and vaccines that treat TB will be a focus of discussions this week in Moscow.

How seriously thereafter the world’s leaders take TB as a health crisis that needs prioritising we shall discover at the first ever United Nations High Level Meeting on TB, to be held in September 2018.

Eliminating TB will not be easy but neither is it impossible – history has shown that just as challenging global health crises have been overcome when political commitment and scientific innovation coalesce.

This week the TB community needs a strong dose of sensible talk leading into long term meaningful action. Eastern Europe, home to the world´s fastest growing HIV and MDR TB epidemics, seems a good place to start.

By José Luis Castro and Michel Kazatchkine
José Luis Castro
is Executive Director of The International Union Against Tuberculosis and Lung Disease (The Union)
Michel Kazatchkine
is the UN General Secretary´s Special Envoy on HIV/AIDS in Eastern Europe and Central Asia.

Statements from the European HIV-Hepatitis Testing Week Working Group Sun, 19 Nov 2017 22:06:44 +0000 The European Testing Week Working Group has released two statements supporting safer and voluntary testing for key and most affected populations for HIV and hepatitis.

The first is a statement to all of Testing Week signatories to review the joint statement (available in 6 different languages) created by an informal alliance of NGOs and ensure access to effective, comprehensive, rights-based, safe, anonymous and voluntary HIV and Hepatitis testing for everyone in order to promote early diagnosis and linkage to care.

The Working Group released a second statement that encourages government bodies and policy makers to review the joint statement and consider supporting the outlined principles in legislation.

European HIV-Hepatitis Testing Week 2017 is taking place on 17-24 November.

Open letter to the Romanian MoH to focus on TB Thu, 16 Nov 2017 19:34:07 +0000 The Romanian Health Observatory, supported by the Romanian Angel Appeal Foundation (RAA) under the Global Fund programme, has published “The Crisis of Anti-TB Medicines in Romania”, a comprehensive and evidence-based report and long-term sustainable solutions for the TB drugs situation in our country. The report is endorsed by the Romanian Stop TB Partnership.

The Report states that “Out of the 28 investigated TB medicines mentioned as essential or necessary for the treatment of Tuberculosis and drug-resistant tuberculosis by the World Health Organization or by the Methodological Guidelines for Implementing the National Program for the Prevention and Control of Tuberculosis in Romania, 15 essential drugs are reported to be unavailable or have disruptions in supply caused by existing legislative barriers in Romania. Other 3 drugs recommended in international guidelines, but considered to have alternatives, are missing from Romania.”

Despite the slight fall in TB incidence, Romania still has the highest number of new TB cases every year in the EU. It also is an upper-middle income country, which will make it ineligible for international donors in the near future.

Since 2007, full-course drug regiments for the treatment of MDR/XDR-TB have been procured by RAA through GDF mechanism, with funding from the Global Fund and Norway Grants. These drugs supported the NTP to provide adequate non-interrupted treatment to over 2,000 MDR/XDR TB patients. In addition, with the support of the Global Fund, a WHO Technical Assistance Mission was organized by RAA in 2016 to assess the situation and formulate recommendations for resolving the crisis. Until now, the Romanian State has made no significant progress in this regard.

We urge the Romanian Government to take immediate action in order to be able to procure the full regimens for both TB and MDR/XDR-TB patients, from domestic funds.

We have designed an open letter for the Romanian Prime Minister and the Minister of Health we want to send and publish this week. Please find attached the open letter, the Executive Summary and the full report, in English.

This letter has also been endorsed by EATG: TB Romania Open Letter_with signatures

]]> Join MSF and Stop TB Partnership in asking countries to #StepUpforTB Sat, 11 Nov 2017 22:59:32 +0000 Join Médecins Sans Frontières (MSF) and the Stop TB Partnership in a call to action to #StepUpforTB by signing and sharing a petition by 14 November 2017. The petition will be delivered at the Global Ministerial Conference on Ending TB to be held on 16-17 November 2017 in Moscow, Russia. Sign the petition here!      

Vital microbicides may soon be out of reach Sat, 11 Nov 2017 22:55:34 +0000 Whether, when, and how microbicide development proceeds depends on the U.S government, and the federal Division of AIDS has suggested this development may no longer be a priority. It’s wrong.

The first proven microbicide to prevent HIV may be ready for market by the end of the decade. That’s the good news. The bad news: Although there are numerous candidate microbicides in the research pipeline, this first one could end up being the only one to become publicly available. That’s because of a push to eliminate funding for research of these vital tools. The public has until November 30 to comment on such a move. More on that later.

For over 25 years, women have been calling for an HIV prevention tool that is woman-initiated, easy to use, undetectable during sex and, ideally, comes in both contraceptive and non-contraceptive forms. Research to develop such products, called microbicides, started in 1992.

Twenty-five years later, a vaginal ring, replaced monthly, is now undergoing regulatory review by the European Medicines Agency, the first microbicide to make it to this point. The International Partnership for Microbicides plans to submit it to the South African Health Products Regulatory Authority (South Africa’s equivalent of the FDA) in early 2018, followed later by submissions to other national regulatory authorities in sub-Saharan Africa. If the ring is approved, the soonest it is currently projected to be available in some countries is late 2019. It will be the realization of a dream almost three decades in the making.

Like the contraceptive NuvaRing, this microbicidal ring is a hollow silicone device—but loaded with dapivirine, an anti-HIV drug, that is released gradually over the course of a month. In clinical trials, the ring reduced new HIV infections by 56 percent among women who used it consistently as instructed.

The chance to cut one’s HIV risk in half is big news, indeed, in areas where most of the 25- to 29-year-olds with HIV (two-thirds) are women, and where only about half of all adults between 25-49 years old report using condoms regularly. Researchers estimate that this vaginal ring, alone, could “avert at least a million HIV infections [globally] over the next 20 years.”

Oral pre-exposure prophylaxis (PrEP), a pill to prevent HIV, is a new prevention strategy that offers much higher levels (over 90 percent) of protection if taken daily. A recent demonstration project among young women in South Africa, however, showed that even while getting reminders to take a pill daily, only 57 percent of participants had detectable levels of the prevention drug in their blood at week 12, and 38 percent by week 24. This suggests that the higher efficacy of the pills can be offset by inconsistent use when daily adherence is required.

The dapivirine ring is just the first of several microbicide candidates under development. Researchers are now testing the feasibility of longer-lasting, multi-purpose rings loaded with both an anti-HIV drug and a contraceptive, thus preventing both HIV and pregnancy simultaneously for up to three months. One-time use, fast-dissolving vaginal films and tablet inserts (to be inserted before sex) are also being tested.

Several “behaviorally congruent” rectal microbicide products are also in development. These products are formulated to look and feel like the douches and lubricants that people often use before or during anal sex—but have the advantage of containing anti-HIV drugs. Thus, they should fit comfortably into common sexual behaviors while also providing protection to the user and her/his partner. 

Why Would Microbicide Development Stop Now?

Whether, when, and how microbicide development proceeds depends on the U.S government simply because it has provided almost all the funding so far to develop HIV prevention tools, including PrEP, microbicides, and the (still elusive) HIV vaccine. This funding has been allocated by the Division of AIDS (DAIDS) at the National Institute of Allergy and Infectious Diseases (NIAID), which is part of the National Institutes of Health (NIH).

Between 2000-2016, for example, over $3 billion was spent globally on microbicides research and four times that amount—more than $12 billion—on vaccine development. Almost all of this money (93 percent of the vaccines funding and 84 percent of the microbicides funding in 2016, for example) came from DAIDS.

Now, however, the government is looking to reduce funding for all kinds of important public health research, including for HIV and AIDS. DAIDS Director Carl Dieffenbach announced earlier this year that he will be leading the NIH’s effort to “refine the HIV research enterprise” by prioritizing funding for HIV prevention products that are both long-acting (work in the body for six months or longer) and systemic (affecting the whole body). Vaccines, long-term injectable PrEP, and implants meet this definition. But microbicides do not.

Microbicides are instead localized, only affecting the part of the body that needs protection; reversible, because drug levels do not remain in the body long after use; short-acting, designed to be used only at the time of sex (the vaginal ring is an exception to this); and user-controlled, meaning not injected or inserted by a medical provider.

One of DAIDS’ arguments against microbicides is that “it has not been demonstrated that the most vulnerable users would choose or adhere to these products.” This is based on the results of a few microbicide gel trials and two ring trials, in which ring use among some participants was lower than expected. Additional research is pending to see if the low rates of ring use among younger women were motivated by physical, social, or behavioral factors.

Two “open-label” studies are also underway to assess ongoing interest in the product. Once the effectiveness of a new product has been proven, an open label trial is done to see how participants feel about using it. Typically, uptake and adherence is significantly greater in open-label trials because participants know they are all getting the real product and not being randomly assigned to either the real drug or the placebo (or fake drug), as occurs in the effectiveness trial.

The question of ring acceptability among younger women, in particular, is also a matter of ongoing study. Between 2014-2016, a U.S. study enrolled 96 sexually active girls (ages 15-17) in six cities and found that almost all (95 percent) participants described the ring as easy to use. Blood tests done to confirm product use among the study participants found the preventive drug in 87 percent of the participants blood samples. Another trial in Africa is also planned to look specifically at how African adolescent girls and young women (16-21) feel about the ring.

Despite the mixed data on young women’s willingness to use the microbicidal ring, Dr. Dieffenbach, a biophysicist, maintains that DAIDS funding should only be allocated to developing prevention tools that are both long-lasting and systemic. Advocates see this decision as resulting in the defunding of microbicide research altogether. The only other potential funder for the field would be private, corporate interests. Unfortunately, the available evidence demonstrates that that this expectation is not at all realistic.

At its highest level (in 2006-07), commercial investment comprised 2 percent of all funding for microbicide research, and development and came from small biotech companies, not pharmaceutical corporations. By 2016, commercial interests were providing 0.2 percent of all resources for microbicide development. Without public support, and specifically without DAIDS funding, microbicide research and development will likely stall. This will waste 25 years of labor, amassed expertise, and investment that have brought the field to this present cusp of success, as well as the opportunity to put HIV prevention into women’s hands.

DAIDS’ focus on long-lasting methods overlooks the fact that effective microbicides are right around the corner and no injectable PrEP (which would likely require six clinic visits per year) or HIV vaccines have proven levels of effectiveness. Further, it ignores the great lesson of contraception: that different people want different methods. When people have a range of birth control choices (pills, implants, rings, injections, intrauterine devices, and so on) available to them, the number of unintended pregnancies goes down. One size does not fit all, especially in terms of personal protection. We can’t end AIDS by ignoring that lesson.

Between Now and November 30: Take Action

DAIDS has provided an opportunity for the public (in the United States and internationally) to submit comments between now and November 30. These comments go straight to DAIDS and they make a difference!

To enter your comments to DAIDS about microbicide funding, go to:

Here are some points to keep in mind:

  1. The United States has been, by far, the world’s strongest funder for microbicides research to date. If that stops in the next funding cycle, the chance to finish development of microbicides that could save millions of lives will be lost.
  2. Men who have sex with men in a wide range of countries and young women, especially those in southern Africa, are two key populations at very high risk of HIV contraction. If we can reduce their vulnerability to HIV, we may be able to turn the tide of AIDS. Both populations have expressed the desire for microbicides and a willingness to use them. Their needs are immediate, urgent, and ongoing.
  3. A multi-purpose vaginal ring is already in development that would provide women with contraception and HIV protection—an enormous benefit, especially for young women. The United States must not stop now and miss the chance to put these kinds of tools into women’s hands!
  4. Several rectal microbicide products are now being tested for their feasibility and safety. With so much money and time already invested, it would be financially wasteful not to finish testing these candidates to find out if one or more of them works for rectal protection.

You can also sign on to an international community letter to DAIDS on this issue by clicking on this link. Signers (organizations and individuals) from all nations are welcome!

The level of alarm about this change in direction has even roused Congress members’ attention. Rep. Jan Schakowsky (D-IL) has initiated a “Dear Colleague” letter inviting her colleagues to join her in signing to, “Support Microbicides as an NIH and NIAID Research Priority.” Please speak out with us on this urgent issue. Together, we can be heard.

For more information on this issue, please visit

By Anna Forbes

TAG releases new report on TB research funding Thu, 09 Nov 2017 20:27:37 +0000 Higher funding for TB research signals hope, but governments must dramatically increase spending to end TB.

Before the World Health Organization Global Ministerial Conference on Ending TB in the Sustainable Development Era, advocates call on all countries to increase support for TB research to reach global targets.

NEW YORK, NOVEMBER 8, 2017—Global funding for tuberculosis (TB) research reached a previously unreported high of $726 million in 2016, according to a report released today by Treatment Action Group (TAG) and the United Nations–hosted Stop TB Partnership. This represents a $100 million increase over 2015 levels and marks the first time annual funding for TB research and development (R&D) has exceeded $700 million since TAG began tracking spending in 2005. Although higher than in previous years, this amount remains woefully inadequate when judged against the innovation gaps holding back the response to TB, which is the world’s leading cause of death from a single infectious agent.

In October, the World Health Organization (WHO) announced that TB killed 1.7 million people in 2016 and caused 10.4 million new cases of TB disease. “WHO’s new TB burden estimates highlight the persistent lethality of the TB epidemic in the face of chronic underfunding and limited scientific progress,” said Mark Harrington, TAG executive director. “Exceeding $700 million in funding for TB R&D in 2016 is a hopeful sign, but with at least $2 billion needed annually, this must be the preliminary ascent, not the peak. We have to make up for decades of underinvestment and scientific neglect.” The Stop TB Partnership estimates that the world needs to spend $9 billion on TB R&D from 2016 to 2020 to stay on track with the global goal of ending TB by 2030.

TAG released the report, The Ascent Begins: Tuberculosis Research Funding Trends, 2005–2016, a week before ministers of health and high-ranking officials from over 90 countries will meet in Moscow at the first Global Ministerial Conference on Ending TB in the Sustainable Development Era, convened by the WHO and hosted by the government of the Russian Federation. The Ministerial Conference will culminate in a signed political declaration committing ministers of health and other agencies to work with each other and within their governments to end the TB epidemic by 2030, as called for by the United Nations Sustainable Development Goals (SDGs) and the WHO End TB Strategy. That strategy indicates that universal access to currently existing technologies will not be enough to reduce TB incidence and mortality to the desired near-elimination levels; instead, ending TB by 2030 will require introducing new tools to prevent, diagnose, and treat TB no later than 2025.

“Ministerial engagement on TB R&D is important, but unless we have heads of state committing to fill the TB research funding gap, we will go nowhere,” said Dr. Lucica Ditiu, executive director of the Stop TB Partnership. “We must raise the TB R&D topic on the political agenda, through our continuous advocacy, and the first-ever United Nations High-Level Meeting on Tuberculosis in 2018. And political commitments and discussions must translate into concrete actions. Governments must increase their spending on TB research to develop the innovations we need to end TB.”

The TAG/Stop TB Partnership report cautions that the spending increase observed in 2016 is mostly attributable to existing major donors such as the U.S. National Institutes of Health and the Bill & Melinda Gates Foundation, which together have contributed over half of all reported funding for TB research since 2005. Pharmaceutical industry expenditures on TB R&D declined for the fifth straight year.


Download the report The Ascent Begins: Tuberculosis Research Funding Trends, 2005–2016

More information:

  1. Country-Specific TB Research Funding Targets
  2. WHO Global Ministerial Conference on Ending Tuberculosis
  3. G20 Leaders Declaration (para. 22 mentions TB R&D)
  4. BRICS Leaders Xiamen Declaration (para. 64 mentions TB R&D)

About TAG

Treatment Action Group is an independent, activist, and community-based research and policy think tank fighting for better treatment and prevention, a vaccine, and a cure for HIV, TB, and hepatitis C virus (HCV). TAG works to ensure that all people with HIV, TB, and HCV receive lifesaving treatment, care, and information. We are science-based treatment activists working to expand and accelerate vital research and effective community engagement with research and policy institutions.

Undetectable = Untransmittable: a community brief Wed, 08 Nov 2017 22:44:58 +0000 The International Council of AIDS Service Organizations (ICASO) developed a brief to provide the HIV community with current information and analysis of new and updated clinical data on the effectiveness of antiretroviral therapy (ART) in preventing HIV transmission to sexual partners of people living with HIV. While the health benefits of treatment will always be the primary purpose of ART, it is vital that the secondary benefits to people living with HIV and their sexual partners be fully understood and communicated. The brief is organized as follows:

  1. Introduction
  • Overview of the rationale for this brief as well as a glossary of key terms
  1. HIV Basics: Prevention, Sexual Transmission and the Dual Role of Anti-retrovirals
  • Overview of current global information on sexual transmission, combination HIV prevention packages and the dual role of ART in improving the health of people living with HIV and preventing sexual transmission to sexual partners
  1. The Science of HIV Transmission: What’s New?
  • Summary of clinical findings released in 2016 and early 2017 on the role of ART in preventing transmission to sexual partners of people living with HIV
  • Brief review of the clinical evidence regarding the use of ARVs as oral pre-exposure prophylaxis (PrEP) by HIV-negative people to prevent HIV acquisition
  1. Advocacy for Access to ART and HIV diagnostics
  • Analysis of implications of new and updated clinical findings in developing advocacy strategies to address disparities in access to HIV diagnostics including viral load testing and ART.
  1. Advocacy for Accurate, Rights-based HIV Education: Challenging HIV Stigma
  • Analysis of implications of new and updated clinical findings in developing rights-based HIV education for people living with HIV
  1. The Population Potential of ARVs as Prevention
  • Analysis of the population potential of ARVs in reducing or eliminating sexual transmission of HIV
  1. Law Reform on Criminalization of HIV Non-Disclosure
  • Implications for advocacy for law reform efforts aimed at ending the unjust, overly-broad application of general and HIV-specific laws which criminalize people living with HIV
  • ICASO’s position is consistent with international guidance on restricting the use of criminal law to exceptional circumstances of intentional, actual transmission.


Download the community brief here.

ACHIEVE Coalition sends open letter to Romanian MoH Tue, 07 Nov 2017 22:59:07 +0000 The ACHIEVE Coalition sent this open letter to the Minister of Health of Romania today. The letter, co-signed by EATG as a member of ACHIEVE, calls the Romanian government to prioritise viral hepatitis in health policies of the European Union when acting as the President of the EU Council in 2019.

“Your support would be invaluable in helping the European Union, its Member States and countries across Europe to deliver on their commitments to eliminate hepatitis B and C by 2030 as set out in the WHO Global Strategy and WHO Europe Action Plan. Action in this area will also complement implementation of the EU’s UN Sustainable Development Goals’ (SDG) commitments to end the epidemics of AIDS, tuberculosis and combat hepatitis” – states the open letter.

Read the full letter here: 171107 ACHIEVE letter Minister Bodog on priorities for Romanian Council Presidency

The Lancet on U=U Fri, 03 Nov 2017 14:24:08 +0000 This editorial was published in The Lancet on 4 November 2017. Following previous communications from the CDC of the USA and other scientific sources, The Lancet now also confirms that the evidence is conclusive: People living with HIV who have an undetectable viral load do not transmit the virus through sexual contact. 

The fact that people infected with HIV who are virally suppressed cannot sexually transmit the virus to others is now accepted in the HIV/AIDS community as a result of accumulating evidence since the early 2000s. In early 2016, the Undetectable=Untransmissable (U=U) slogan was launched by the Prevention Access Campaign to promote the finding. The campaign has been rapidly gathering momentum, having been endorsed by more than 400 organisations from 60 different countries since its launch. Last month, the US Centers for Disease Control and Prevention (CDC) joined the movement by endorsing the science in a letter released on National Gay Men’s HIV/AIDS Awareness Day.

The evidence to support the effectiveness of viral suppression in blocking transmission is clear. In addition to some smaller studies done since 2000, three larger studies of sexual HIV transmission in thousands of serodiscordant couples including thousands of acts of sex were done between 2007 and 2016, with, strikingly, not a single case of sexual transmission of HIV from a virally suppressed HIV-positive person to their HIVnegative partner reported. The HPTN 052 trial, the largest study to date, studied 1763 serodiscordant couples (both homosexual and heterosexual) from nine different countries and randomly assigned HIV-positive participants to either early or delayed antiretroviral treatment (ART). Interim results published in 2011 showed that 39 HIV-negative partners had become HIV positive so far, of which 28 were phylogenetically linked (ie, 28 people acquired their infection from their partner). Of these 28, only one occurred in the early ART group. After this analysis, ART was then offered to all patients with HIV and all patients continued to be followed up to 2015, with the final results published in September last year. Over the entire course of the study, 78 infections were observed, of which phylogenetic linkage was established in 72. Of these infections, 46 were linked to the HIV-positive partner, eight of which occurred after the partner commenced antiretroviral therapy. Of these final eight, four occurred before viral suppression and the other four occurred when ART failed to achieve viral suppression. In other words, not one virally suppressed HIV-positive patient transmitted their infection to their partner during the entire study. The PARTNER study, published in July last year, was an observational study of 1166 HIV-serodiscordant couples (also both homosexual and heterosexual) from 14 countries across Europe with more than 58000 instances of unprotected sex reported. Although 11 HIV-negative partners became HIV positive, none of these transmissions were linked. Finally, results of the most recent study, the Opposites Attract study, were presented this July at the 9th International AIDS Society Conference on HIV Science in Paris. This cohort study followed up 358 homosexual men with HIV from three different countries with about 17000 acts of sex taking place. Three new cases of HIV infection were observed but, as expected, none of these infections were linked either. The fact that HIV treatment has advanced to the point that people infected with HIV can live full-length, healthy lives with zero chance of sexually transmitting the virus to others as long as they are on effective ART is a huge success.

Although evidence for this fact has been growing since 2000, it has been slow to influence public perception. However, the U=U campaign, launched just under 2 years ago now, has been directly tasked with tackling this unfortunate public ignorance, and to flying success in its fairly short lifespan to date. The slogan embodies the idea of treatment as prevention. This idea has been around since at least 2010, but since the easy to-grasp U=U slogan has been established, the concept has been firmly pushed into the public sphere and has been a major talking point in the HIV/AIDS community this year. The CDC officially backing the science behind the campaign is another key step towards U=U being the most important message of 2017 in the fight against HIV.

U=U is a simple but hugely important campaign based on a solid foundation of scientific evidence. It has already been successful in influencing public opinion, causing more people with HIV (and their friends and families) to comprehend that they can live long, healthy lives, have children, and never have to worry about passing on their infection to others. The clarity of the message will make it easier to promote the undeniable benefits of treatment, which will encourage more and more people with HIV to seek treatment, bringing the HIV community one step closer to achievement of the UNAIDS’ 90-90-90 target by 2020 and to complete elimination of the entirely unfair and outdated stigma still faced by many people living with HIV today. ■ The Lancet HIV

Download The Lancet editorial here: LANCET U=U 11 2017

CoPE Call for Applications Fri, 03 Nov 2017 09:25:11 +0000 We are pleased to announce a special CoPE call for hepatitis, addressing the need for access to hepatitis prevention, testing, treatment and care services by co-infected key populations. Please find below detailed information on how to apply for this grant. The submission deadline is Monday 30 November 2017 (23:59 CET).

What is CoPE?
The CoPE project is a funding mechanism that enables the production and translation of patient education materials, brochures and other resources related to HIV/AIDS & co-infections in multiple languages. More information about CoPE can be accessed here:

Who can apply and receive a grant?

Any community-based organisation in the European and Central Asian region dealing with prevention and treatment of HIV/AIDS and co-infections can submit an application to CoPE. The selection is based on the soundness of the proposed project and available funding.

What type of publications are supported?
CoPE supports publications which:

  • Promote necessary, objective, reliable and up-to-date knowledge and skills about HIV/AIDS and co-infections among patients, patient groups, groups at-risk, and healthcare providers;

  • Raise awareness and appreciation of facts and issues related to HIV/AIDS treatment among PLWH (such as women, men who have sex with men, injecting drug users, sex workers, migrant communities and other groups at-risk);

  • Offer objective, scientifically-accurate, high-quality, patient-focused and user-friendly overview and summary of relevant health and treatment information on specific and generic HIV-related topics and issues;

  • Engage, support and empower local HIV-positive community for the preparation and development of necessary and relevant treatment materials.

  • The final format of the resource may be a printed brochure, booklet, handout etc. or an online document/website.

Specific focus for this call
This call is specifically focused on the topic below. Applications dealing with other topics will not be considered during the selection process.

  • Applications addressing the need for access to hepatitis prevention, testing, treatment and care services by co-infected key populations. This includes publications that support the local community in better understanding HCV and HBV as co-infections.  

Application procedure
Please fill in and submit an application form online via this link:
Please fill in all the sections of the application form in English. Incomplete applications will not be considered.

Submission Deadline
The deadline for submission is Monday 30 November 2017 (23:59 CET).

Notification of selection outcome
The outcome of your application will be announced five weeks after the submission deadline.

Before applying

  • Map the existing resources in the local language and in English/other languages. An archive of the materials previously funded by CoPE is available here.

  • Define if you would like to translate an existing publication or develop something entirely new.

    • For a translation, ask for authorization from the original author for the use of the material. Specify the eventual changes you would like to make to the original (adapting it to the local context).

    • For a new publication, develop a summary of the main topics and themes covered. Make sure you have access to leading expert(s) in the field who can guarantee the accuracy of the information.

  • Make a detailed cost estimate of the cost of production of the publication, including writing/translating, proofreading, design & layout, printing and dissemination. The estimate should be based on actual quotes from different service providers. Please note that, if accepted, the CoPE grant is paid in two instalments: first 50% when a print-ready document is submitted and the remaining amount upon receipt of financial and narrative reports (incl. copies of all invoices and receipts).

  • Please note that the maximum amount that is available for this call is 1,100 EUR. Applications requesting lower amounts will be considered favourably in the selection process.

  • Make a realistic timeline for the production process. Please note that, if accepted, the project should be finalized within 3 months (for translations) or 6 months (for new publications) from the signing of the grant agreement. The final grant amount may be decreased in case of delay caused by the grantee. Therefore, make sure you and your collaborators are ready to start working instantaneously if your application is approved.

  • Draft a dissemination plan. The publication should be widely promoted (locally, regionally and nationally) via different channels.

If you have any questions regarding the CoPE project or the application form please contact Maria Dutarte (EATG Project Manager) at

World Hepatitis Summit – Declaration of the Hepatitis Community Thu, 02 Nov 2017 22:52:18 +0000 The World Hepatitis Summit passed and published the Declaration of the Hepatitis Community “NO ELIMINATION WITHOUT DECRIMINALIZATION!” today. The Declaration calls for the decriminalization of people who use drugs, and the global upscale and support of prevention, harm reduction and treatment services available to them.

It urges states “to remove all barriers to the uptake of the full range of prevention services by people who use drugs by reforming laws, law enforcement procedures and discrimination that hinder access, including the criminalization of minor, non-violent drug offences and to adopt an approach based overwhelmingly on public health promotion, respect for human rights and evidence”.

The consortium of signatories was led by Medecins du Monde, and EATG has also been a member.

Declaration website:

Declaration in French: Hepatitis-declaration-FR

Declaration in English: Hepatitis-declaration-EN

U=U unites with ITPC to improve the lives of people living with HIV Wed, 01 Nov 2017 22:59:30 +0000 GABORONE, Botswana – Nov 1, 2017 – The International Treatment Preparedness Coalition (ITPC) and Prevention Access Campaign (PAC) announced today a groundbreaking partnership that will amplify the Undetectable=Untransmittable (U=U) message among communities of people living with HIV worldwide.

U=U reinforces the public health benefits of antiretroviral therapy (ART), affirming that a person living with HIV on ART with an undetectable viral load cannot sexually transmit HIV. The growing campaign has already been endorsed by more than 450 community partners in 65 countries, and the U=U science confirmed by leading public health bodies including UNAIDS, the U.S. Centers for Disease Control and Prevention (CDC), the European Centers for Disease Control and Prevention (ECDC), and the International AIDS Society (IAS).

When people in power, like U.S. House Representative Betty Price, are still asking in 2017, if there are ‘any methods, legally, that we could use that would curtail the spread [of HIV]?’ the answer is a bold YES! – provide the medicine needed to be undetectable. This partnership is timely and critical; there is no question that communities should know the science behind what U=U means. This knowledge alone can be life-changing – not only for people living with HIV, but their families, friends, and loved ones,” said Solange Baptiste, ITPC Executive Director.

The collaboration builds on the work of both organizations and will equip activists across the globe to integrate U=U into their on-going advocacy efforts to improve access to optimal HIV treatment. The partnership will enable the U=U message to better reach and be utilized by those who it concerns most: communities.

“The ITPC team and those of us who are a part of the U=U campaign share the same belief in international solidarity among people living with and affected by HIV,” said Bruce Richman, Executive Director of PAC. “With its roots in the Global South and an internationally recognized track record for capacity building and community engagement, ITPC is the ideal implementing partner to empower communities with U=U knowledge and strategies in accurate and meaningful ways.”

The partnership will work in parallel with PAC’s existing partnership with the International Association of Providers of AIDS Care (IAPAC), focused on providing U=U training and education for clinical and allied health professionals to integrate into clinical practice in specialized and primary care settings.

* * *

A copy of this press release (PDF) is available here.

Note: An undetectable viral load is typically under 40 copies/ml depending on the diagnostic tests. However, studies show a person living with HIV on antiretroviral therapy (ART) with a viral load of 200 copies/ml or less also cannot sexually transmit HIV. This is called being “virally suppressed.” For the purposes of the U=U campaign and any Prevention Access Campaign materials, the term “undetectable” is used synonymously with the term “virally suppressed,” meaning a person living with HIV with a viral load of 200 copies/ml or less cannot transmit HIV.

About ITPC Global

The International Treatment Preparedness Coalition (ITPC) is a worldwide coalition of people living with HIV and community advocates working to achieve universal access to optimal HIV treatment of those in need. Formed in 2003 by a group of 125 HIV activists from 65 countries at a meeting in Cape Town, South Africa, ITPC actively advocates for treatment access in eight regions across the globe. ITPC believes that the fight for HIV treatment remains one of the most significant global social justice issues. For more information about ITPC, please visit

About the Prevention Access Campaign

The Prevention Access Campaign’s Undetectable = Untransmittable (U=U) campaign is an international community of HIV advocates, activists, researchers, and over 450 community partners from more than 65 countries uniting to disseminate the scientifically supported message that people living with HIV who are on effective antiretroviral therapy with an undetectable viral load do not sexually transmit HIV.  For more information about the Prevention Access Campaign, please visit

MSF secures generic hepatitis C treatment at $120 compared to $147,000 launch price tag Tue, 31 Oct 2017 19:15:36 +0000 Geneva/Sao Paolo, 31 October 2017—On the eve of the World Hepatitis Summit in Sao Paolo, the international medical humanitarian organization Médecins Sans Frontières (MSF) today announced that it had secured deals for generic hepatitis C medicines for as low as US$1.40 per day, or $120 per 12-week treatment course for the two key medicines sofosbuvir and daclatasvir.

In the US, pharmaceutical corporation Gilead launched sofosbuvir at $1,000 per pill in 2013, and Bristol-Myers Squibb (BMS) launched daclatasvir at $750 per pill in 2015, leading to the original price tag of $147,000 for a person’s 12-week combination treatment course. The corporations have also been charging exorbitant prices in many developing countries, paralyzing the launch of national treatment programs and causing treatment rationing in many countries around the world.

“What good is a breakthrough medicine that people cannot afford?” asked Jessica Burry, Pharmacist for MSF’s Access Campaign. “Pharmaceutical corporations price hepatitis C medicines far out of reach for people paying out of pocket around the world, and also for many governments struggling to provide treatment in the public sectors; but the prices for generic versions keep coming down. Governments must use every tool in their toolbox to fight for access to lower-priced generics so they can scale up treatment for the millions of people who need it; they should follow the lead of countries like Malaysia and issue compulsory licenses when patents block people’s access to this life-saving treatment.”

In 2015, MSF started procuring sofosbuvir and daclatasvir from Gilead and BMS through their ‘access programs’ at a price of $1,400 to $1,800 per 12-week treatment. Today, MSF pays a fraction of that, at $120, sourced from quality-assured generic manufacturers.

An estimated 71 million people have chronic hepatitis C infection worldwide, 72 per cent of whom live in low- and middle-income countries. Direct-acting antiviral medicines (DAAs) represent a treatment breakthrough for people with hepatitis C, with cure rates of up to 95%, and with far fewer side effects than previous treatments. Yet access to DAAs has remained limited because pharmaceutical corporations charge unaffordable prices, leading many countries to reserve treatment only for people with the most advanced stages of the disease. By the end of 2016, three years after sofosbuvir was launched, only an estimated 2.1 million people globally had been treated with the medicines, leaving 69 million people still without access.

These high prices have also put a major strain on health systems in wealthy countries, in particular those enacting universal health care. Treatment is being rationed in countries such as Australia, Canada, Italy and the US, in addition to developing countries, and is a stark reminder of the early days of HIV treatment.

“Almost two decades ago, MSF and others worked hard to get access to generics and bring down prices for HIV medicines,” said Mickael Le Paih of MSF in Cambodia, where MSF treats people living with hepatitis C. “History is repeating itself with hepatitis C—the medicines we need are again too expensive, but we are finding ways to make treatment affordable so that our patients can be cured.”

Health group challenges Gilead patents in the US on grounds of lack of novelty Wed, 25 Oct 2017 20:45:50 +0000 A health advocacy group today (October 25) announced that it has challenged a set of United States patents for a hepatitis C medicine. The group says drug maker Gilead Sciences has obtained unmerited patents for sofosbuvir, blocking millions of US patients from affordable treatment.

The Initiative for Medicines, Access & Knowledge (I-MAK) filed the first-ever set of US patent challenges against sofosbuvir with the US Patent Trial and Appeal Board. The group challenged six patents, arguing that sofosbuvir’s patents do not meet patentability criteria such as novelty and non-obviousness, according to a press release.

The group also issued a new white paper “America’s Overspend: How the Pharmaceutical Patent Problem is Fueling High Drug Prices.”

The white paper finds that unmerited patents and other strategies allegedly used by the pharmaceutical industry to delay competition on three major cancer and hepatitis C treatments will cause more than $55 billion in excess costs to payers and taxpayers. The paper examines three of America’s most expensive and widely prescribed drugs for cancer and hepatitis C: Revlimid, Sovaldi and Gleevec.

According to the press release, the market for medicines is not working, and removing unmerited patents will allow more affordable generic drugs to be introduced much sooner. The release states that pharmaceutical drugs patents fail too often to meet the standards of US law.

“Pharmaceutical corporations are over-patenting drugs even when there is no new science that justifies their exclusivity and are stacking up as many unmerited patents as possible to prolong their monopolies and block cheaper generics from entering the market,” it says.

EFPIA guidance document on interaction with patient organisations Tue, 24 Oct 2017 20:25:56 +0000 The European Federation of Pharmaceutical Industries and Associations (EFPIA) released a new guidance, Working together with patient groups.

The aim of the document is to underline the rationale for interactions between the pharmaceutical industry and patient organisations, suggest the principles on which these interactions should be based, outline the points of collaboration through the life cycle of a medicine, discuss some of the challenges and potential solutions to interact as well as providing a list of resources to support meaningful/appropriate collaboration.

The document was co-created by representatives of patient organisations and the research-based pharmaceutical industry through the EFPIA Patient Think Tank with support from EFPIA’s Ethics and Compliance Committee.

Download the document here:

Working together with patient groups

IAS publishes Bruno Spire’s suggestion for GIPA 2.0 Thu, 19 Oct 2017 23:59:35 +0000 In a blog post, IAS has published HIV+ researcher and activist Bruno Spire’s proposal for a new, better and more functional GIPA Principles. The Greater Involvement of People with HIV/AIDS Principles (based on the Denver Principles) requires that people living with HIV/AIDS should be in positions where they can actively shape and influence policies that affect them.

Spire proposes a review of these principles to make them more inclusive, to reflect better the lived realities of PLHIV, and to overcome some of the shortcomings of the original GIPA Principles.

“I think that we should have an alliance between people who have classical expertise and people living with HIV who have life expertise of HIV and who should have the political power to tell the experts what to do. We need to avoid the common tendency at the global level to divide civil society by continually drawing people living with HIV from organizations and, instead, empower people living with HIV to take power within the organizations that are actually running activities.

In my view, GIPA doesn’t mean that large organizations should make sure that on the side there is a small organization of people living with HIV who are occasionally consulted and asked what they think. GIPA means that people living with HIV should replace these large NGOs and actually become the principal agents for organizing the response. People living with HIV will never be able to do this alone, which is why it is important that we become united, including people with expertise. Ultimately, we should be focusing on uniting sero-concerned people. These include not only seroinfected but also sero-affected or sero-exposed people – all of whom have a personal reason to get involved in the response.

It’s not enough to have a designated seat at the table for any key population or person living with HIV. What matters is that that person also represents a group, not only themselves. With no movement behind them, this form of representation is just tokenism. ”

Read the entire post here:

Download the article here:

Something is still very wrong in Kyiv Thu, 19 Oct 2017 21:53:08 +0000 As Kyiv’s anticorruption reformers continue their uphill struggle, they face increasingly strong resistance from law enforcement agencies.

On October 11, as Olga Stefanyshyna, the executive director of Patients of Ukraine, was heading to work, she received a panicked call. The police had shown up and were turning the nonprofit’s office upside down grabbing documents.

This wasn’t a random occurrence. As part of an ongoing harassment campaign against anticorruption activists over the last several months, the police, prosecutors, and the Security Service of Ukraine (SBU) have been targeting Patients of Ukraine and another leading NGO—The All-Ukrainian Network of People Living with HIV/AIDS (PLWHA)—on trumped-up charges; they claim that these NGOs “misused” funds from the international donor Global Fund to Fight AIDS, Tuberculosis, and Malaria.

This is a shameless lie. Both organizations are regularly audited by Global Fund auditors and no violations have ever been detected.

It’s easy to see why health-sector activists have been targeted. They helped persuade authorities to transfer pharmaceutical procurement from the Ministry of Health to UNICEF and the United Nations Development Fund, which has saved the state at least 40 percent of its budget for drug procurement. Now more life-saving medicines are available. However, Ukraine’s corrupt “pharma mafia”—which includes many SBU officials—lost millions when their rigged procurement schemes were ended.

“Now this illegal tender ‘treasure trove’ is shutdown,” said PLWHA Chairman Dmitry Sherembey, “and as a result this money is no longer transferred to the accounts of the shell companies, but is rather used to procure additional medicines for patients.”

Yesterday’s raid represents an escalation in the effort to intimidate both organizations. Eight criminal cases against Patients of Ukraine and PLWHA have been filed with the SBU in the last several months, and there’s a real risk that the authorities could shut both down. In a worst-case scenario, Sherembey and Stefanyshyna could be arrested.

It’s disheartening to see Ukraine’s law enforcement agencies more concerned with lining their pockets rather than fighting actual corruption. After all, any resources used by the SBU to prey upon legitimate activists represents manpower and money subtracted from what should be its main job—combating the Russian intelligence services’ effort to undermine Ukraine’s independence. Put simply the SBU’s predatory behavior helps Moscow and hurts Ukraine.

It’s time for Ukraine’s Western partners to put an end to this nonsense. Kyiv relies on political and financial support from Western governments and institutions, which gives Ukraine’s partners important leverage.

To start with, Western ambassadors and the representative offices of the World Bank, IMF, and the UN should jointly speak out—undiplomatically if necessary—either through a press conference or an open letter. And if that doesn’t work, then senior government officials in Washington and Brussels should bluntly express their concerns directly to President Petro Poroshenko.

There is no legitimate explanation for harassing Ukraine’s brave activists who have played the key role in changing Ukraine for the better since the Euromaidan. Enough already.

By Josh Cohen
Josh Cohen is a former USAID project officer who managed economic reform projects throughout the former Soviet Union. He is a contributor to Reuters, Foreign Policy, the Washington Post, and others.

Tuberculosis: The cornerstone of the AMR threat Thu, 19 Oct 2017 21:25:21 +0000 The TB Europe Coalition released a policy paper, Tuberculosis: The cornerstone of the AMR threat, providing a brief overview of what antimicrobial resistance (AMR) is. Furthermore, the paper looks in more detail at drug-resistant TB, and discusses why countries need to invest more in research and development of new drugs to tackle it.

To access the policy paper, click here.

People still being denied improved treatment for multidrug-resistant TB Fri, 13 Oct 2017 15:57:57 +0000 Médecins Sans Frontières urges governments to step up the use of newer TB drugs.

Guadalajara, Mexico, October 13, 2017—People with multidrug-resistant tuberculosis (MDR-TB) are still not receiving two newer TB drugs, bedaquiline and delamanid, which have been available for more than four years and have shown improved cure rates for the disease, deplored Médecins Sans Frontières (MSF) at the 48th Union World Conference on Lung Health in Guadalajara, Mexico, where the global TB community is meeting.

Bedaquiline and delamanid, which received marketing authorisation in 2012 and 2014, respectively, are the first new TB drugs developed in nearly 50 years. They represent a potential lifeline for people affected with the most resistant forms of TB, who face abysmal chances of being cured, yet MSF estimates that still less than 5 percent of people who could benefit from them in 2016 actually received them. MSF is concerned about the abysmally slow uptake of new drugs. Only 3,943 people received the two newer drugs in routine healthcare settings during the first half of 2017 – a meagre increase of 1,000 more people treated compared to the same period in 2016.

“Delamanid gave me a second chance at life and I wish that these tablets could be made available to the many people who are struggling with drug-resistant TB, because there are so many people who are vomiting from the standard treatment at the moment, or crying from the injection, or even losing their hearing and dropping out of school or work,” said Sinethemba Kuse, who had XDR-TB and was treated with delamanid in MSF’s project in Khayelitsha, South Africa.

Globally, 30% people with MDR-TB could benefit from the new drugs, according to estimates.* Yet, as of July 2017, only 10,164 people worldwide with DR-TB have received bedaquiline, and only 688 have received delamanid.

“Until five years ago, we had no treatment options and were forced to accept the risks of giving people a regimen containing DR-TB medicines that we knew had a slim chance of curing them; but what’s the excuse now for not using these drugs?” said Dr Isaac Chikwanha, HIV and TB Medical Advisor at MSF’s Access Campaign. “Today, it’s unacceptable to continue treating with the same old regimen of medicines and not providing better treatment, knowing very well that we could be giving people a much better chance to stay alive by using these newer drugs.”

Tuberculosis is the world’s deadliest infectious disease, killing 1.8 million people each year. Current standard treatment for DR-TB requires people to take nearly 15,000 pills over two years, causes severe and debilitating side effects, and cures just one in two people. The two promising newer drugs were brought to the market with great hope they would form the backbone of new and dramatically-improved treatment for DR-TB.

“Use of bedaquiline and delamanid is currently limited for several reasons, including the fact that some national TB programmes are too conservative,” said Dr Chikwanha. “The pathetic rollout of newer drugs is unjust for people who now have a chance at effective treatment.” The global TB community, governments and donors must collectively take urgent steps to increase access to these two newer, promising drugs in order to save the lives of people with DR-TB.”

MSF has been treating people with TB for 30 years. In 2016, MSF treated more than 20,000 people with TB, including 2,700 people with MDR-TB. As of June 2017, MSF, in partnership with national ministries of health, has started more than 1,500 patients in 14 countries on DR-TB regimens that include bedaquiline and/or delamanid.

* This estimate includes people who meet World Health Organization (WHO) criteria: people with extensively drug-resistant (XDR-) TB and people with MDR-TB who cannot tolerate treatment with other drugs. According to the conservative estimates of the DR-TB Scale Up Treatment Action Team (STAT), 30% of people with MDR-TB could benefit from the new drugs. Based on MSF’s field experience, this figure could go up to 70% in places where there is a high proportion of people with XDR-TB and with exposure to second-line drugs.


Issue brief: Four years and counting examines current opportunities to optimise MDR-TB treatment and to address the persistent access challenges that put treatment out of reach for people struggling to survive this deadly disease.  Available for download at:

HIV JUSTICE Toolkit to support advocacy against HIV criminalisation now online Tue, 10 Oct 2017 21:45:41 +0000 HIV JUSTICE WORLDWIDE launched a tool, HIV Justice Toolkit, aiming to support advocates to oppose HIV criminalisation at all levels – from educating communities and lawmakers to defending individual cases.

The Toolkit is a comprehensive compendium of almost 300 documents and videos, organised under twelve main headings, each of which is broken down into futher subsections.

  1. How HIV criminalisation undermines the HIV response
  2. What the experts says
  3. Organising advocacy
  4. Understanding the law
  5. Initiating policy and law reform
  6. Supporting fair and robust trials
  7. Using science to prove your argument
  8. Working with police
  9. Educating prosecutors
  10. Educating judges
  11. Getting the message right
  12. Other toolkits


Read more here.

Joint NGO statement on health sustainability in trade and investment agreements Mon, 09 Oct 2017 11:08:59 +0000 Last week EATG contributed to this joint statement at a Civil Society Dialogue meeting on EU trade policy and Sustainable Development with European Commissioner Malmström (Trade). The reason the subject matters is that EU-Third country trade agreement contain intellectual property and clinical trial data exclusivity provisions that can result in longer timeframe for countries to access generics than is currently the case. EATG and the EU HIV civil society forum have address European Trade Commissioners on a few occasions.

“The undersigned organisations call on the European Commission to design and implement a responsible trade policy which ensures health sustainability, enables public health action on health security threats, and mainstreams the EU commitments under the UN Sustainable Development Goals (SDGs). This is in line with the obligation in the EU treaties to ensure a high level of health protection in all EU policy areas (TFEU article 168).”

You can read and download the joint statement here: joint statement re Trade4all strategy-layout

Testing Week Statement on Most Affected Populations – Read and Share Mon, 09 Oct 2017 07:50:17 +0000 Anticipating the upcoming European HIV-Hepatitis Testing Week, an alliance of NGOs has issued the following statement in support of reaching out to and involving most affected populations in HIV and hepatitis testing efforts.

“We recognise that ETW 2017 marks a significant step up in advocacy and action to challenge existing barriers to safe voluntary testing, both real and perceived, and to truly ensure nobody is left behind. Building on this unique opportunity, we are pleased to stand in solidarity with others representing or working with our peer-led country or regional networks, and with HIV/Hepatitis organisations to promote this vital testing campaign.”

Read and download the joint statement here: ETW2017_Key Populations goals_JointStatement

EATG signs on call to action for reconsidering primary HIV prevention Sun, 08 Oct 2017 17:46:02 +0000 Reconsidering primary prevention: Call to action for the global HIV response

The world needs a new phase in the evolution of the HIV response – one that reinvigorates prevention by seamlessly combining the strategic efficacy of upstream, midstream, and downstream interventions with the powerful effectiveness of community action.

Community-led prevention must be properly resourced. Policy makers and donors, including governments, must shed their reluctance to openly and positively address sex and drug use in their public health discourse and responses to HIV. The international development and HIV sectors must adopt a more nuanced understanding of gender. And we must collectively embrace the fact that even the best prevention tools, including antiretroviral medications, will not work without assent from communities most impacted by HIV.

The Global Forum on MSM & HIV (MSMGF), Global Action for Trans Equality (GATE), IRGT – A Global Network of Transgender Women and HIV, The Global Advocacy  Platform to Fast-track the HIV and Human Rights Responses with Gay and Bisexual Men (The Platform), the Global Network of People Living with HIV (GNP+), the Global Network of Sex Work Projects (NSWP), the International Community of Women Living with HIV (ICW), and the International Network of People Who Use Drugs (INPUD) are unified in calling upon advocates, healthcare providers, researchers, public health officials, and donors to:

  • Stop chasing magic bullet solutions to HIV and end sloganeering about HIV drug coverage – instead, invest in carefully tailored combination approaches;
  • Evolve primary prevention in a manner that seamlessly stitches together bio-medical, behavioral, community, and structural interventions, because these interventions lose their effectiveness without the others;
  • Combine and tailor prevention approaches with consideration to acquisition and transmission dynamics that are specific to key populations – blanket approaches leave people behind;
  • Imbue HIV primary prevention, care, and treatment with the power of community ownership and abandon top-down approaches;
  • Remedy funding inequities by investing more substantively, strategically, and differentially in evidence-informed, rights-based, and community-led programs; and,
  • Adopt community-endorsed, human rights-based principles of practice, starting with the GIPA principle.


Read more here.

Download Reconsidering primary prevention of HIV: New steps forward in the global response here.

Moscow Buyers Club: Russia’s AIDS patients work together to overcome medication shortages Sun, 08 Oct 2017 17:43:29 +0000 MOSCOW, October 8 — Many of the posts on the website — a chat room for Russians diagnosed with HIV, the virus that causes AIDS — are alarming.

“Today my husband went to the clinic and they told him that they gave out all the medicine on Monday,” wrote Nelli from Ufa. “He went downtown and they told him they have no medicine and they aren’t getting any.”

“I feel awful, but they won’t give me any treatment. They said there is a shortage of antiretroviral treatment in Tomsk Oblast and they are only giving it to the most dire cases,” wrote Marina from Tomsk. “I am raising a child, and I don’t want to die.”

Problems with the distribution of HIV/AIDS medications have become endemic in Russia, forcing patients to increasingly rely on one another to get the treatments they need. The situation in Russia in 2017 has come to resemble the plot of the Hollywood movie Dallas Buyers Club, which was set in the United States in the 1980s.

“When I was diagnosed with HIV in the early 2000s, there was no treatment at all,” says Aleksei Yaskovich, the head of the Melnitsa nongovernmental organization in Kursk who created the Aptechka network for redistributing HIV/AIDS medications in 2010. “My doctor told me, ‘If you live three years, you’ll be lucky.’ Back then, it was really scary. But now you know that medicine exists but that you aren’t getting it because of some bureaucratic hang-ups.”

Yaskovich noticed seven years ago that the Health Ministry’s system for distributing vital HIV/AIDS medications frequently produced situations where clinics ran out in the middle of the year, leaving patients with life-threatening gaps in their treatment.

“And people were dying,” Yaskovich tells RFE/RL. “It all began back then. They would take medicine away from some patients and give it to others. Pregnant women and children had priority.”

So patients began to organize.

Patients whose treatment regimen was changed would send their old medications to Yaskovich for redistribution. In the beginning, the entire Aptechka program could be found in Yaskovich’s refrigerator.

“It was full of pills, boxes, and bags,” he recalls. “My mother was getting upset.”

He discussed the problem at a conference in Vienna in 2011.

“Other people left the conference with souvenirs,” he says. “I had half a suitcase full of several thousand tablets of Kaletra.”

Medicines also became available in more tragic situations.

“Our friends would die and their mothers would give us their medications,” says Svetlana Prosvirina, head of the Kaliningrad NGO Status+ and local Aptechka coordinator. “I remember the first time: A friend of mine died of an overdose and his mother gave us a whole chest of pills at his wake. Apparently, he had gotten seriously into drugs and had forgotten about his medications. That is how we filled our little drugstore the first time.”

A protest against a previous shortage of HIV/AIDS medications in Moscow in December 2011. "What happened in 2011 is happening again now, in 2017," says one activist.

A protest against a previous shortage of HIV/AIDS medications in Moscow in December 2011. “What happened in 2011 is happening again now, in 2017,” says one activist.

Sometimes, medicines come straight from the producers, through sympathetic workers there.

“Everything is done through personal contacts,” says Ivan, who asked not to be identified because he works in a state-run clinic. “I call a friend and he says, ‘We have a couple of boxes we can share. Bring a car.’ I don’t have a car, but I go with two backpacks and a shopping trolley. Then we send them to Biisk, Rubtsovsk, and Barnaul.”

Russia is virtually the only developed country where the number of new HIV infections and the number of AIDS-related deaths in on the rise. According to UNAIDS, in Spain, for instance, 73 people died of AIDS in 2015 compared to 1,034 in 2006. In France, those figures were 354 and 61.

In Russia, by contrast, government figures show that 1,529 people died of AIDS in 2005. By 2013, that figure was 10,611, and last year, it reached 18,577. Activists say the death toll will likely top 20,000 this year. It is impossible to say how many of these cases result from the irregular access to vital medications that Aptechka tries to counter.

“In the first half of this year, we sent 93 parcels to various regions,” says Yulia Vereshchagina of the NGO Patient Control in St. Petersburg. “That is about four or five parcels a week. But it is hard to tell exactly how many people we are helping because a lot of the packages are for more than one person. Sometimes one parcel has supplies for up to five people.”

Aptechka also helps patients who are simply too tired or too ill to make it to their clinic to get their medications. Or, in some cases, they are unable to take enough days off work both to make their doctors’ appointments and to travel back to the town where they are registered as HIV patients.

For 2017, the Health Ministry spent 17 billion rubles ($296 million) to buy treatments for 235,000 patients. Activists estimate this covered about one-third of the demand. In September, the government added an additional 4 billion rubles.

The spike in shortages has strongly activated the Aptechka network this year.

“Now, we aren’t only helping out with pills, but we are also urging people to write complaints to [state consumer protection agency] Rospotrebnadzor,” Ivan says. “We tell them not to wait around. In Barnaul, when people started writing, we saw some progress. It hasn’t produced a positive solution, but while in the past people just hung around their local AIDS centers, now they are giving pills to the loudest ones.”

Yaskovich continues to generate ideas to alleviate the situation, but he is pessimistic.

“I keep thinking about creating a single online resource where the managers of all the drugstores in the country could post in real time information about what drugs they have, when they expire, and so on,” he tells RFE/RL. “They have this idea that with ‘import substitution’ [as a result of Western sanctions against Russia and Moscow’s self-imposed countersanctions] we will start producing [the medications] ourselves and everything will get better. This is an illusion. Nothing will get better. I don’t see any improvement in the situation. What happened in 2011 is happening again now, in 2017.”

By Robert Coalson and Anastasia Kuzina

EATG signs on joint statement from civil society organisations on the situation faced by the LGBTI community in Azerbaijan Wed, 04 Oct 2017 21:59:16 +0000 Mass detention of Azeri LGBTI people– the LGBTI community urgently needs your support

Alarming stories of physical violence, verbal abuse, forced medical examinations and detentions of LGBTI people have been emerging from Azerbaijan over the past two weeks.

The signatories of this statement are appalled by the situation being described by LGBTI activists and lawyers based in the country:

  • Members of the LGBTI community have reported being assaulted, forcibly medically examined, fined or forced to reveal contact details from their mobile phones.
  • Media reports published over the weekend (1 October) also included references to detainees being electrocuted.
  • The Azerbaijan authorities confirmed that the detentions took place and defended them by claiming that the raids were motivated by public health concerns (implying that it is a coincidence that LGBTI people are being detained).

We welcome the news from the Ministry of Internal Affairs (followed a statement on 2 October) that all detainees have been released. However, this update does not signal the end of the crisis. Intergovernmental bodies and international institutions have an undeniable responsibility to speak out now and support the victims.

The undersigned human rights organisations are calling on international institutions to put their human rights mandates into practice. We urge them to use all possible mechanisms available to strongly condemn the situation in Azerbaijan, such as public statements and bilateral diplomacy.

Given the seriousness of the human rights abuses reported from multiple sources, the reaction from international institutions needs to be stronger, more visible, and more sustained. So far, the public response from international institutions has been slow.

The civil society organisations who have signed this joint statement urge the international community to:

  • Be more vocal in their condemnation of the treatment of LGBTI people in Azerbaijan
  • Push for a thorough, independent investigation into the police raids
  • Keep the victims of these raids at the forefront of their minds and actions

Resources needed to support victims and their communities

The LGBTI community in Azerbaijan (and their allies) now require specific assistance for multiple needs: ranging from immediate financial resources to cover fines and court fees, legal assistance and medical care to more long-term requirements such as relocation, resettlement and psychosocial support. Some victims are reportedly being released into homelessness/precarious housing, in some cases without the support of their family. Local activists and NGOs do not have the capacity or immediate resources to deal with this crisis alone.

This is where the LGBTI movement in Europe can mobilise to support our community members in Azerbaijan. ILGA-Europe have launched an urgent appeal for donations to help organisations to support the victims; these funds will be re-granted to activists working directly with people who have been detained.

Human rights violations are always shocking. While these developments could not have been predicted, we can control how we choose to respond.


ILGA-Europe – the European Region of the International Lesbian, Gay, Bisexual, Trans and Intersex Association

Civil Rights Defenders

COC Netherlands


International Partnership for Human Rights

The Equality Network

European AIDS Treatment Group

Human Rights First

TGEU – Transgender Europe

Kaleidoscope Trust

Human Dignity Trust

African Rainbow Family

UK Lesbian & Gay Immigration Group (UKLGIG)

All Out


HIV Justice Network

Apoyo Positivo

Eurasian Coalition on Male Health (ECOM)

AFEW International

Eurasian Harm Reduction Association (EHRA) established and working Wed, 04 Oct 2017 21:55:47 +0000 02.10.2017: The Eurasian Harm Reduction Association (EHRA) is glad to announce the launch of its work in the Central and Eastern Europe and Central Asia (CEECA) region.

EHRA is a non-profit non-governmental membership-based organization established by a group of activists and professionals working in the field of harm reduction in the CEECA region, registered in Vilnius (Lithuania) in 2017. Our task is to promote progressive human rights-based drug policy in the region, as well as advocate for the sustainable financing of harm reduction services in line with the needs of the community of people who use drugs (PUD).

Establishment of this new regional organization was initiated by the staff of the Secretariat and the members of the Steering Committee of the Eurasian Harm Reduction Network (EHRN), an organization that for 20 years has championed community interests and harm reduction programs in the region. This decision was motived by the escalation of critical situation in EHRN, which in September this year has led to the resignation of all staff and members of the Steering Committee, withdrawal of dozens of individual and organizational members of the network, termination of funding by the donors and cessation of all EHRN’s program activities. EHRN was registered as a non-governmental organization and had founders who legally owned the organization and, among other things, had the right to approve and amend its charter, hire and dismiss executive director, and, as it turned out, sell their shares of the organization. At the same time, according to the Charter of the organization, the EHRN Steering Committee – a legitimate management body of the organization elected among the members of the network to make key strategic decisions had only an advisory function, and members of the network had no legal rights at all. This organizational form allowed one of the founders to attempt to sell the shares; this led to protracted trials and the change of one of the owners in August 2017. Immediately after the change in the composition of the owners and the appointment of a new Executive Director, which was done without notifying the Steering Committee, the new management of the organization took a number of steps1 that led to a halt in the implementation of almost all the program activities of the organization and jeopardized the fulfilment of obligations to partners and donors.

In order to overcome this unclear situation and harmonize the legal form of the network with structure and content of its activity, a new organization was established. It has a democratic and more consistent legal form, which gives more rights and powers to its members. According to the statute of the EHRA, the main decision-making body of the organization is an assembly of its members. As on the beginning of September 2017, the organization has 78 members (both organizations and individuals) from CEECA countries, many of whom joined after the meeting of the EHRN members during the regional conference “Harm Reduction in the New Environment”, which took place in April 2017 in Vilnius. During this meeting, the members of the network were informed about establishment of the association and reasons behind this decision. Furthermore, the invitation to re-register as members of the association was sent to the network’s organizational members in May this year (invitations to the individual members for a number of technical reasons were sent only in September).

The key governance structure of the new organization is a Steering Committee (SC), which will consist of 13 individuals to be elected from among the members of the organization on a regional basis. At the moment, the EHRA SC consists of 3 members, who initially acted as the founders of the organization: Leonid Vlasenko (Ukraine) – Chairman of the SC, Agita Seja (Latvia), Lyudmila Trukhan (Belarus). The Steering Committee appoints an executive director of the organization, who is responsible to manage activities of the Secretariat. In August 2017, Anna Dovbakh, a well-known professional and public health activist in the region, was appointed to this position. Current activities of the association are implemented by a team of employees, who previously formed the core of the EHRN Secretariat and who are currently working as volunteers to the organization.

Support for the development of harm reduction in the region can no longer be a hostage to failed organizational and legal decisions. Democratic procedures for electing governing bodies of the network are the only guarantee to prevent similar situations in the future, – says Leonid Vlasenko, chairman of EHRA Steering Committee.

We hope that the legal form of a membership-based association will ensure the sustainability of the organization, will enhance the role of the Steering Committee and the members in the management of the organization, which, in its turn, will contribute to the fruitful working process towards achievement of the Association’s strategic goals. There is still much to do in the nearest future to position EHRA as a key partner in advocacy for access to the essential medical and social services for PUDs and in safeguarding their interests and rights in the region. Plans for the near future include: increasing membership base of the organization and organizing assembly meeting of the EHRA members; conduct strategic planning of the organization’s activities for the next three years; refine the organization’s charter; conduct elections of additional EHRA SC members; organize the work of the EHRA Secretariat’s office and much more.

“The situation in the region with the availability of funding for harm reduction services, as well as with legislation in the field of drug policy, continues to deteriorate. Therefore, the establishment of a strong regional organization that could ensure a necessary response from civil society to those emerging problems is a priority for our team!“, says Anna Dovbakh, Executive Director of EHRA.

As the organization is at a nascent stage of its development, we look forward to the support of donor organizations, technical partners and professional community working in the field of HIV and TB prevention and control, as well as in advocacy for humane drug policy in the CEECA region and beyond. And of course, we are counting on the support of representatives of the community of people who use drugs, as those for whom and with whom we plan to work.

You can contact us and get more information about our current and planned activities by subscribing to our Twitter account, our Facebook page and our website.

We encourage organizations and individuals from the region of Central and Eastern Europe and Central Asia to become members of the EHRA. You can apply for membership on our website here.

Contacts for communication:

Anna Dovbakh, Executive Director of the Eurasian Harm Reduction Association

Phone: +370 688 87 975,

Matthias Wienold: Medical education must be a joint enterprise Sun, 01 Oct 2017 20:02:59 +0000 It is truly a great privilege to get to know the professors, lecturers, and researchers who make and shape medical education. They are the ones who strive to transform motivated young people into the doctors of the future. Now, imagine thousands of them in one place at one conference and you have AMEE, the annual meeting of the International Association for Medical Education.

AMEE has begun to invite individual “patients” to talk about their experiences as, increasingly, this is recognised as being important in the training and teaching of medical students. This year, I was asked as a representative of the International Alliance of Patients’ Organizations (IAPO) to voice the “demands” of patient organisations. I raised a number of areas where patient organisations see the need for change: including improved patient participation in all aspects of medical education, the call by patients for more and better qualified health professionals, and professional support for patients’ interest in learning more about medicine and health, as well as their conditions. Further to this last demand, I called for the resources used in medical education to be available online for free, to create an opportunity for patients to learn from them in addition to the materials produced specifically for patients.

Participants widely agreed that more effort should be made to put the patient at the centre of medical education. The annual AMEE conference is missing an opportunity to do this. Comparing the AMEE conferences with my experience as a patient advocate at the conferences of the International AIDS Society (since 1989) shows that there is room for improvement.

The International AIDS Society works with four different HIV community organisations when developing its conferences—three are constant, and one changes each time.They participate in all the planning stages and provide input to steer key decisions, for example, the selection of keynote speakers. The International AIDS Society also usually provides 200 scholarships for patients and a limited number of full travel scholarships. Registration fees are waived for media representatives of community based organisations. HIV status is not evaluated (to my knowledge), but I would guess that there are typically around 400 to 500 people living with HIV (including researchers) who attend out of 12 000  to 15 000 participants.

So how can AMEE follow this kind of example and ensure that more patients get the opportunity to attend this important annual event, enliven its debates, and help the medical education community realise its stated aim of putting patients at the centre of medical education? I’d suggest that the following steps are needed:

1) The organisers should plan to factor in the cost of patient involvement when they begin planning their conference. From the first planning steps to the evaluation of meetings, patient organisations should become involved—and should be represented through more than one civil society organisation. It’s vital that more than one patient is consulted throughout the entire process. If organisers budgeted for this at the start, it would allow for fuller participation by patients (very few of whom are formally employed in a teaching capacity by medical schools).

2) Experts from patient communities (i.e. those with expertise in medical education) should be invited to contribute fully to the conference programme. As keynote speakers, co-chairs, and discussants, there is scope for patients to have more of a presence and a much stronger voice. Giving patients a forum to present reports about their own efforts in teaching and in being “patient actors” in medical education offers an opportunity to share ideas to the benefit of medical curricula.

3) Creating a patients’ lounge and reference centre (a staffed post) would provide both a meeting point and a place for rest and medical care (if needed). It could also serve as a meeting point for patients to discuss the development of shared education and research proposals.

4) Within the AMEE conference secretariat, there’s room to explore the role of a facilitator who would share patients’ ideas and input among staff (a defined staff position of a “community organiser”).

AMEE is well positioned to reshape its meetings to provide the opportunities, space, and time for more patient partnership. Furthermore, the in-depth study of how best to teach students in their various health professional groupings could also be applied to current approaches in patient education. This would certainly also open up opportunities to transfer the knowledge from the patient education field to medical education. A new academic discipline of composite and complementary learning between patients and students (who are training as health professionals) could be developed.

Patient organisations are interested in and prepared for collaboration with medical educators, and such a move is supported by the International Federation of Medical Students Associations. The medical educators of the future should be experts in patient centredness. This won’t happen without respectful, structured, and sustained dialogue in person and on an equal footing between patients, students, and educators at international conferences and in medical schools.

Note: I thank AMEE for waiving my registration fee and for the invitation to come to their conference this year.

Matthias Wienold, MD, MPH, has been working with patient organisations since 1986. He is a member of the European AIDS Treatment Group and is also a member of The BMJ’s patient panel. He educates patients (as a volunteer) and physicians (as a peer messenger).

Competing interests: None.

See Matthias’s profile on The BMJ’s patient panel page.

Minority group finally represented in Ukraine’ Coordination Council on HIV/AIDS and TB Sun, 01 Oct 2017 20:00:27 +0000 Representatives of the MSM community now have direct representation in the Government’s official coordination body. This participation is crucial for stopping the growing HIV epidemic among men having sex with men (MSM) in Ukraine.

It’s been a long journey until the day Andrii Chernyshev could finally join as a full member of the National Council on TB, HIV/AIDS, an inter-sectoral coordination body chaired by the country’s Vice Prime Minister.

“The HIV epidemic among men having sex with men (MSM) in Ukraine is growing rapidly and still remains hidden. Being gay myself, I have a big interest in having our guys control their health. The most effective way to reach gays or bisexuals can be done only by a person who knows this topic from the inside,” says Svyatoslav Sheremet, a member of the National Expert Group on Health and Rights of Gays and Other Men having Sex with Men in Ukraine. The group has long advocated for the possibility of members of the MSM community to be part of the Government’s official coordination body.

“The direct representation of MSM in this body has a direct impact on the epidemic process. It is a voice of the community that dispels illusions and builds priorities in the right way. Now, our next challenge is to use our involvement at the governmental level us to stop the growing HIV epidemic among MSM.”

In accordance with the Global Fund’s policy, the National Council on HIV/AIDS and TB works as the Country Coordination Mechanism (CCM) and shall directly involve people who represent the key populations affected by the HIV epidemic (including MSM). Last February, the Expert Group on Health and Rights of Gays and Other MSM in Ukraine started the process to elect an MSM representative to the National Council among representatives of 38 non-governmental organisations active on MSM rights. The breakthrough came in April, when the government of Ukraine adopted the resolution establishing the participation of a MSM representative in the Council as obligatory. In May, Andrii Chernyshev was appointed as a member of the Council and could take part in its first decision, by voting the Ukraine Funding Request to the Global Fund for 2018-2020. Vladislav Ostrejko (another MSM activist) was nominated as an alternate member.

“This result was long-due and not easy to achieve,” says Andrii. “The Global Fund recommendation about engaging key affected groups provided a strong foundation. Unfortunately, we experienced resistance not only from Government members of the National Council, but even from representatives of non-governmental organisations. At present, as a result of more than a year of dialogue and negotiations, we came up with a strong, well-coordinated community, which is finally represented at the national level. Our goal for the nearest future is to motivate and support our members in all regions of Ukraine to enter local coordination councils on HIV and TB. This will enable us to advocate for effective policy implementation, while standing as a watch dogs to ensure MSM rights and HIV-related services provision. In the long-term, our objective is to improve collaboration with local authorities to advocate for sustainability of HIV-related services and rights protection of MSM at the local level, once Global Fund funding comes to an end. It’s high time to do it, taking into account the simultaneous reform processes which are currently going on in Ukraine and affecting provision of services at the local level – decentralization, health reform, and reforms in the social sphere. We have a lot of work ahead!”

According to 2015 estimates, there are 181,500 MSM in Ukraine, including transgender people. The public Health Centre of Ukraine reports on the increasingly stronger HIV/AIDS epidemic impact to the highly stigmatized group of men who have sex with men.

Ukraine has one of the fastest growing HIV epidemics in the region, with an estimated HIV prevalence in the adult general population of 0.9 [0.8-1.0]. The estimated number of people living with HIV (PLHIV) in Ukraine is 238,000 (UNAIDS, SPECTRUM 2017). The officially registered cases are however much lower, with  132,945 HIV cases registered in national statistics as of 1 January 2017.

The United Nations Development Programme, a long-time supporter of LGBTI rights in Ukraine, is promoting empowerment and participation of MSM leaders and activists in the decision-making process.

Stigma continues to impact on people living with HIV in Ireland Sun, 01 Oct 2017 19:58:52 +0000 HIV Ireland calls for Government action as national survey finds stigma continues to impact on people living with HIV

17 per cent of HIV positive people say they have felt suicidal in the last year.

Read the full press release here.


See also:

Human rights defenders play a key role in the HIV response Fri, 29 Sep 2017 15:09:27 +0000

While running a legal clinic for refugees 10 years ago, Kene Esom, former Director of African Men for Sexual Health and Rights (AMSHeR), saw how difficult it was for marginalized or vulnerable people to access health-care services. “That is where I realized that as a lawyer and a human rights defender, I could play a role in increasing access to health-care services and defending human rights.” In his more recent role as Strategic Initiatives Adviser to the AMSHeR Board, he is still at the forefront against discrimination, especially discrimination against gay men and other men who have sex with men in Africa.

Mr Esom makes it clear that when he is talking about human rights in the context of HIV, it is not just the right to health that matters. “There is a pattern of human rights violations towards gay men in many countries, owing particularly to the criminalization of consensual same-sex conduct,” said Mr Esom. “For example, when a newspaper decided to publish a sensational story about gay men having a party, the men were arrested. detained and forcibly tested for HIV. All their due process rights were violated and their right to privacy breached to the extent that their names, addresses and pictures were published in the newspaper.”

Mr Esom said that incidents such as this can roll back years of progress in providing HIV services for key populations. “You cannot provide health services without taking into consideration the human rights context of the populations you are providing the services for. You can build the best health-care facility, but gay men will not come to that facility if they are worried that police will arrest them or that doctors will report their sexual behavior.”

Globally, gay men and other men who have sex with men are 24 times more likely to acquire HIV than adults in the general population. Stigma, discrimination, violence and the criminalization of same-sex sexual practices make it more difficult for these men to access HIV prevention, testing and treatment services.

AMSHeR supports human rights organizations to undertake evidence-informed advocacy. “Human rights defenders play a key role in bringing these issues to light and showing the impact that human rights violations can have on HIV responses, especially on services targeting key populations,” said Mr Esom.

Although there is still a lot of silence around issues surrounding sexuality, sexual orientation and gender identity, there is hope. “When I started this work six years ago it was a completely different context. There were very few people who wanted to advocate on these issues. Now, we have a greater pool of people in countries all over Africa and the world, and the communities are standing up for their rights and demanding access to services and a rights-based approach to service delivery.”

In its work, AMSHeR emphasizes the role of communities in advocating for change and speaking directly to policy-makers. “They are the voices and faces of the issues that affect them.”

The right to come together is key. “Many gay men think they are alone. Isolation increases their vulnerability. Bringing people together to discuss their issues creates a community that is empowered to speak up. If that space is not there, engaging policy-makers and service providers becomes more challenging.”

Mr Esom will be speaking about the promotion and protection of human rights in the context of HIV and other communicable disease at the Human Rights Council Social Forum, which is being held from 2 to 4 October. To hear more from Mr Esom and other human rights activists, register to participate at the Human Rights Council Social Forum at

Dear AIDS Activist Thu, 21 Sep 2017 21:25:02 +0000 by David Alain Wohl, MD Professor, Division of Infectious Diseases, The University of North Carolina at Chapel Hill Director, North Carolina AIDS Training and Education Center Site Leader, The University of North Carolina Chapel Hill AIDS Clinical Research Site

Read the full ‘letter’ here.

New government in Macedonia budgets for ARVs and prevention services to KAPs, as Global Fund support comes to an end Wed, 20 Sep 2017 21:59:29 +0000 Decision hailed as a “very important step in ensuring the sustainability of HIV services”
MOH will be required to establish a long-term mechanism for funding CSOs

On 5 September, the recently elected government of the Republic of Macedonia ordered the Ministry of Health to allocate 103 million Macedonian denars  (approximately € 1,674,000) within the National HIV Program for 2018 to (a) ensure continuous access to antiretroviral (ARV) treatment for HIV-positive people; and (b) support the implementation of HIV prevention programs among key affected populations (KAPs) such as men who have sex with men (MSM), persons who inject drugs (PWID) and sex workers (SW). This amount is nearly four times bigger than the amount that had been budgeted for 2018 by the previous government. Local activists consider this development to be a very important step in ensuring the sustainability of HIV services in Macedonia.

According to Arben Fetai, Senior E.U. Policy Advisor for Stop AIDS Alliance, one of the key factors contributing to this achievement was the personal commitment of the new Minister of Health, Arben Taravari, who has introduced multiple initiatives to restore citizen’s trust in the health system. Fetai said that the new government, which was elected on 3 June after a two-year-long political crisis, is resolutely pro-European and reformist, a total break with the previous government which ran the country for eleven years amid corruption scandals and under-investment in social sectors.

Fetai said that the Minister took this decision in his third week in office, during his first meeting with civil society representatives – “a great example of budget advocacy at work.” Unfortunately, he added, Taravari has been requested by his party to run for Mayor of his hometown in local elections scheduled for 22 October. Taravari has communicated that he won’t come back to the Ministry whether he wins the election or not.

“That means that there will be a new Minister of Health on 23 October,” Fetai stated. “Although the new minister will belong to the same political party, it is not a given that he or she will be supportive in the long term of the initiatives that Taravari was pursuing. Continued engagement will therefore be very important.”

In an email published on the European AIDS Treatment Group (EATG) listserv on 7 September, Andrej Senih, an HIV activist from Macedonia and a member of the EATG, said that the decision of the government is very important for two reasons. First, it obliges the Ministry of Health “to establish by the end of 2018 a functional long-term mechanism for financing the activities of the National HIV Program targeting key affected populations that are implemented by civil society organizations (CSOs).” Importantly, the major part of the allocated funding, 60 million denars (about € 1 million euros), is designated to support HIV prevention services that CSOs are delivering to these key populations. This amount is more or less at the same level of annual funding that was previously available for programs implemented by CSOs with Global Fund support in the last few years. So, no major decrease of funding is expected.

Second, this is the first official and formal government document to express a clear commitment to support civil society–based HIV prevention activities and to lay out the precise steps to ensure the sustainability of HIV services for key affected populations (KAPs) in the country.

Petition on harm reduction and prevention

In a related development, in June of this year, HOPS (Healthy Options Project), a major HIV prevention NGO service provider in Skopje, launched a petition calling for harm reduction and HIV prevention programs to be maintained in Macedonia. The petition was addressed to the Ministry of Health and the Government of Macedonia. According to the petition, the continued survival of harm reduction and HIV prevention programs in Macedonia is uncertain because the current financial support from the Global Fund ended in June 2017. The petition said that this could endanger 17 harm reduction programs operating in Macedonia, which have proved their effectiveness; and this could, in turn, result in over 10,000 people who use drugs as well as their family members being left without proper social and health care. Hristijan Jankuloski, Executive Director of HOPS, told Aidspan that given the latest developments, there is reason to believe that a successful transition of HIV services for KAPs from Global Fund support to national funding will take place in Macedonia.

The decision by the Macedonian government guarantees that the new funding for HIV treatment and prevention, which had been submitted by the Ministry of Health in the draft versions of the 2018 budget, will remain during the rest of the budget planning cycle for 2018 (which is likely to take another 1-2 months). Even more important, said Andrej Senih, is that the commitment can be considered as formal recognition by the government of the HIV epidemic among KAPs in Macedonia, and of the role of CSOs as key partners to reach out to KAPs and to provide them with much needed HIV services.

Funding gap in 2017

Now, community activists and CSOs are waiting for the Ministry of Health to announce an open call for NGOs to apply for funding, as there is a need to urgently disburse funding allocated for the prevention activities among KAPs for 2017. This will fill a gap that remains from now until the end of December (although some funding is also still available within the current HIV Global Fund grant which recently obtained another no-cost extension until the end of 2017). A public procurement mechanism will be used, and only NGOs will be eligible to apply, but it is not clear yet how it will work in practice. A lot of work remains to be done to pilot this mechanism and to ensure that it is functional and accessible to NGOs working in the area of HIV prevention among KAPs. Also, the detailed planning of the activities within the 2018 National HIV Program needs to be done through a consultative process with CSOs that are key implementers of prevention programs.

But there are also other gaps in Macedonia’s transition-related processes that need to be addressed. In the opinion of Jankuloski, who is also the Chair of the country coordinating mechanism (CCM), one such gap is related to the governance of the national HIV response. The Macedonian CCM is not a formal body and probably will not continue its work after Global Fund support ends. For this reason, Jankuloski said, it is important to strengthen the National HIV Commission and make sure that this structure, first, inherits from the CCM its multi-stakeholder composition (to make sure that KAPs and NGOs have a voice in the decision-making processes) – and, second, is not just a consultative body of the MOH, but rather has decision-making power concerning program and budget matters, and also has an oversight function similar to what the CCM has.

Another gap mentioned by Jankuloski is related to human resources, as the MOH has never worked with NGOs directly before. As well, the people currently working in the Project Implementation Unit – the structure which is responsible for implementing the programs funded by the Global Fund in country – officially are not MOH employees and will probably leave as soon as the Global Fund grant comes to an end.

By Ivan Varentsov

An Activist’s Guide to the TB LAM Test Wed, 13 Sep 2017 21:45:27 +0000 As TB has risen to become the leading infectious killer of people living with HIV (PLHIV), diagnostic tests such as the TB LAM test are critically important to ensure diagnosis of TB quickly for this vulnerable population. LAM represents the only current point-of-care TB diagnostic test overall, that is specifically used for detecting TB in PLHIV with low CD4 counts, and is the only test that has a proven impact on reducing TB deaths in people with HIV.

An Activist’s Guide to the TB LAM Test provides important messaging and strategies to support in-country LAM advocacy and activism. Furthermore, this guide seeks to help advocates and activists ensure uptake of the test across a variety of key targets, including implementation by National AIDS and TB programmes, registration by regulatory authorities, to pressuring donors to push the use of LAM test among countries that are dually burdened by HIV and TB.

Download the guide here.


See also:

  • TB/HIV Activist Toolkit 2017 Update


The 2017 update to the TB/HIV Activist Toolkit modules, developed by Treatment Action Group, continues to build and provide fundamental information about TB in order to strengthen global advocacy and scientific literacy around TB and TB/HIV.

The toolkits cover important base knowledge on TB and TB/HIV, as well as strategies to support advocacy across diagnostics, treatments, and prevention for TB. The information is intended to help activists and others to develop community education materials and sessions on TB, and to inform their advocacy.

Download the toolkits here.

EATG signs on submission to the European Commission on SPC review Mon, 11 Sep 2017 21:59:20 +0000 Over 30 civil society organisations urge EU to abolish supplementary protection certificates mechanism

In an open letter and open submission, thirty-three civil society organisations have called on the European Commission to abolish the supplementary protection certificates (SPC) mechanism and to stop encouraging the inclusion of SPCs – or similar mechanisms, such as patent term extensions – in free trade agreements with other countries.

Supplementary protection certificates (SPCs) expand and extend existing monopoly rights of pharmaceutical corporations. As such, SPCs lead to higher medicines prices by preventing generic competition for a longer period of time and prolonging the monopolies of originator pharmaceutical companies.

Briefing note on supplementary protection certificates (SPCs)

SPCs were initially introduced, and partly justified, based upon pharmaceutical companies’ concern that they were no longer given a fair opportunity to recover their investments in research and development (R&D). However, SPCs are counterproductive to stimulating innovation. They create incentives for companies to focus on prolonging monopolies through controversial ‘evergreening’ strategies, including the filing of multiple patents and pursuit of prolonged patent terms for the same medicine. SPCs do not create incentives for innovation targeting unmet public health needs; rather, they disproportionately empower commercial interests and encourage pharmaceutical companies to prioritise R&D only in profitable markets.

High prices of lifesaving medicines have become a global challenge, in Europe as well as in the developing world. Prolonged market exclusivity through SPCs has enabled companies to charge unaffordable prices, as demonstrated – in detail and with concrete examples – in the full submission text.


EHRN is being destroyed by the new tandem of its co-owners Tue, 05 Sep 2017 21:59:12 +0000 An open letter from the Steering Committee of the Eurasian Harm Reduction Network (EHRN) as well as the staff of the EHRN Secretariat on their resignation from the organization due to the aggressive and destructive approach of the new tandem of the organization’s shareholders to its governance. 


For all whom it may concern

4 September 2017

Dear Colleagues,

With this letter, the members of the Steering Committee (SC) of the Eurasian Harm Reduction Network (EHRN) and staff of the secretariat want to share information about their resignation from EHRN effective as of 4 September 2017.  This resignation comes in response to aggressive and destructive approach of the Organization’s shareholders, Ingrida Sulciene and Linas Merkelis, and the new Executive Director, Vitautas Sulcas, towards the governance of the organization, which, in our opinion, is based purely on their financial interest in EHRN at the expense of the programmatic activities of the organization.

For 16 years, the Secretariat of EHRN, under the guidance of the Steering Committee, has been implementing activities in accordance with the mission and the strategy of the network in a transparent manner and was accountable to the members of the network. During this period, the organization was strengthened to successfully advocate the values of harm reduction in the CEECA region and beyond and to become a reliable partner for communities of people who use drugs. In less than one month, the new management has demolished what has been built over those years and managed to destroy one of the strongest regional networks with over 600 members working in 29 countries.

The fact that these events took place in Lithuania, a country with a very supportive environment for work of non-profit organizations, is unfortunate and frustrating. The reputation and authority of the organization was well known beyond Lithuania and the organization pays national taxes on hundreds of thousands of euros each year. Nevertheless, unfortunately, members of Steering Committee and staff of the Secretariat can no longer ensure the continuation of programmatic activities of the network in line with work-plans and in adherence to financial and administrative procedures within the organization. From now the responsibility for any further actions of the organization and fulfillment of obligations towards donors and partners lies with the new director and shareholders of the organization.

The actions of the new management towards the staff of the Secretariat that have resulted in the resignation of the whole staff and SC include:

  • An attempted hostile takeover of the Secretariat office[1], during which the staff was forcefully retained in the office by private security forces, hired by the shareholders;
  • Unlawful confiscation of computers of some employees;
  • Dismissal of Anna Dovbakh from the position of Acting Executive Director and unlawful appointment of Vitautas Sulcas on this position, who is the husband of one of the shareholders, Ingrida Sulciene. This appointment took place without consultation with Steering Committee.;
  • Attempts to threaten the staff through undocumented blame for unclear financial transactions, in order to justify those aggressive actions.

This showed that the new management does not plan to work towards the achievement of the mission and implementation of the strategy of EHRN, as approved by the Steering Committee, and that they may attempt to use the image of the organization and its resources for their personal objectives contradicting the interests of the members, partners, and donors of EHRN. Therefore, we immediately had to inform EHRN’s donors about the developments and currently, most of the donors have recalled their funds and all program activities of the organization has been suspended. Currently, the organization does not even have sufficient funds to pay the salaries to its employees.

The staff of the EHRN Secretariat and members of Steering Committee do not see any way to continue working and supporting the organization, as its legal status does not fit its function and decision-making power lies solely with its two shareholders. Members of the network, as represented by the democratically elected Steering Committee should have the power to define the mission and the strategy of the organization and serve as members with full legal power.

We want to express our deepest gratitude for years of cooperation and we hope that we will be able to maintain those achievements as individuals, or as part of other organizations, especially the Eurasian Harm Reduction Association – a new regional harm reduction network, the establishment of which we are working on. We hope for the continuation of our firm partnership and collaboration to advocate for quality of harm reduction services, meeting the needs of communities in Lithuania, as well in CEECA region as a whole.

Steering Committee of EHRN

Staff of EHRN Secretariat


[1] Video of what has happened in EHRN office on 17.08.2017 you may watch here.

Here you can download the letter in PDF in English and Lithuanian

TAG’s Activist guides to TB diagnostics and treatment now available in Russian Mon, 28 Aug 2017 21:59:52 +0000 Treatment Action Group (TAG) in collaboration with the International Treatment Preparedness Coalition, Russia (ITPCru) released in Russian two of its publications:

1. An Activist’s Guide to Tuberculosis Drugs 2016
The Russian version is available here.

2. An Activist’s Guide to Tuberculosis Diagnostic Tools 2017
The Russian version is available here.

Obituary: Prudence Mabele Wed, 23 Aug 2017 13:50:49 +0000 South African HIV and gender rights activist. Born in Wattville, South Africa, on July 21, 1971, she died from pneumonia in Johannesburg, South Africa, on July 10, 2017, aged 45 years.

Before she became one of the first South African women to publicly reveal her HIV diagnosis in 1992, Prudence Mabele asked Shaun Mellors for advice. Mellors, who is now the Director of Knowledge and Influence at the International HIV/AIDS Alliance, had disclosed his status a few years before. “She wanted to know my reasons”, he said. “We explored how she felt putting a face to HIV would make a difference and would hopefully be able to change public perception.”

Once she made the decision, Mellors said, Mabele embraced her role as an activist, helping establish organisations to support people living with HIV and to champion their rights. Among her many battles, she pushed officials to improve access to treatment for people living with HIV, countered former South Africa President Thabo Mbeki when he publicly questioned the link between HIV and AIDS, rallied support for psychosocial services for HIV patients, and led efforts to bring more attention to gender-based violence. “She was a human rights activist who was fearless. If she had to say something, she would say it”, said Connie Kganakga, the acting CEO of the South African National AIDS Council (SANAC).

Mabele was born in a township outside Johannesburg in apartheid-era South Africa, the first of four daughters. The end of apartheid in 1991 coincided with her HIV diagnosis. “The country was very excited about the release of Nelson Mandela, about entering democracy”, Mellors said. “It was very easy to forget about this lurking shadow called HIV. Prudence tried to ensure that people looked at the new democracy with a sense of reality. Unless we addressed HIV as a country, the democracy would not necessarily mean anything.” In Karina Turok’s book Life and Soul: Portraits of Women who Move South Africa, Mabele explained to Turok that she was determined to speak out because, while she knew HIV was affecting women, their concerns were not being considered. “My vision was to meet women in the same situation”, she said. “I knew that in the whole of South Africa I wasn’t the only one with AIDS. I wanted to talk about the pain.”

Mabele began to work with organisations like the Society for Women and AIDS in Africa to connect to other women living with HIV. And in 1996 she founded her own group, Positive Women’s Network, which creates community-level support groups to help women access a range of services, from HIV testing to job opportunities. She was also a leader of the “One in Nine” campaign, which called for policies to address violence against women, especially those living with HIV. She was serving as Deputy Chair of SANAC’s Civil Society Forum when she died. Although women living with HIV remained the main focus of her 25 years of activism, colleagues said Mabele was constantly surveying the broader HIV response in South Africa and elsewhere to identify other gaps in services or communities whose needs were being overlooked. With the advent of new and better treatment options, Mabele helped found the Treatment Action Campaign in 1998—the organisation played an important role in pushing to ensure antiretrovirals (ARVs) were made affordable and widely available. “She was forcing our government to make sure there are antiretrovirals”, said Mluleki Zazini, the National Director of the National Association of People Living with HIV and AIDS. “She used to go to marches, picketings, sit-ins, to make sure that we have ARVs.” Mabele remained active in the policy realm, campaigning for pharmaceutical companies to drop ARV prices and helping draft national HIV strategies. Luiz Loures, the Deputy Executive Director of UNAIDS, said Mabele’s personal commitment was central to her success as an organiser and activist. “There is more and more an issue in this epidemic of bringing back passion to the centre, bringing back emotion to the centre”, he said. “She brought all of that.”

A sangoma, or traditional healer, herself, Mabele advocated that they be assimilated into South Africa’s HIV response to better integrate science and traditional medicine. She is survived by her mother, Fikile Judith Motaung, and two sisters. “She was an incredibly articulate, authentic, and real voice demonstrating the struggles and needs of many people, particularly women living with HIV and affected by gender-based violence”, Mellors said. “For many of us, she was the activist that we aimed to become.”

By Andrew Green

Zambian civil society groups express deep concern over compulsory HIV testing Sun, 20 Aug 2017 20:20:45 +0000 LUSAKA, Zambia, 20 August 2017 — The Treatment Advocacy and Literacy Campaign (TALC), Community Initiative for Malaria and Tuberculosis (CITAMplus), Coalition for Zambian Women Living with HIV and AIDS (COZWHA), Network of ARV Users and Zambian Network of Religious Living or Personally Affected by HIV and AIDS (ZANERELA) have commended the Zambian Government on launching HIV Counseling Testing and Treatment Day (HCTT) Aug. 15, by His Excellence Edgar Chagwa Lungu.

However, the groups have expressed deep concern on the recent announcement during the launch by The Zambian President Edgar Chagwa Lungu that HIV testing, counseling and treatment is now compulsory in Zambia for any person seeking medical treatment in public healthcare facilities.

The group’s have appealed to the government to rescind the decision and revoke the proclamation forthwith. “Compulsory HIV testing is illegal and unconstitutional in Zambia as both the Supreme Court and the High Court in Zambia have found that consent is only present if it is provided freely, without undue influence, coercion, fraud, misrepresentation or mistake”, said Felix Mwanza National Director for TALC.

“While the policy aims, according to President Lungu, to improve HIV testing and treatment adherence rates, on the contrary, coercive measures fuel stigma and drive people away from healthcare facilities” said Carol Nawina Nyirenda Executive for CITAMplus.

“Informed consent is critical to ensure that individuals are empowered in managing their health. It has been shown that an individual’s sense of self-efficacy plays a major role in how one approaches goals, tasks, and challenges regarding one’s health, with directly-evidenced clinical benefits” said Mable Mwale Coordinator for COZWHA .

“The approach also violates healthcare ethics and is contrary to international standards, including World Health Organization and UNAIDS guidelines on HIV testing and treatment. International guidelines on HIV and human rights from the United Nations Office of the High Commissioner for Human Rights (OHCHR) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) state “public health legislation should ensure that HIV testing of individuals should only be performed with the specific informed consent of that individual”, said Kenly Sikwese from Afrocab.

Exceptions to voluntary testing would need specific judicial authorization, granted only after due evaluation of the important considerations involved in terms of privacy and liberty.The World Health Organization (WHO) and United Nations Population Fund (UNFPA) similarly state that HIV testing must “only [be] conducted with informed consent”.


See also:

Conference invitation – From HIV testing and linkage to care to the integration of HIV, Hepatitis, TB & STIs Fri, 18 Aug 2017 12:37:24 +0000 We are pleased to inform you about the European conference “from HIV testing and linkage to care to the integration of HIV, Hepatitis, TB & STIs” that will take place on 19 September at the Thon City Hotel in Brussels.

The programme is attached here: Invitation_draft agenda_2017AUG18_clean

If you would like to attend, please register via Please note that we are unfortunately not in a position to cover travel and accommodation costs.

Background information

The conference marks the completion of two EU-funded projects promoting early diagnosis and linkage to care for HIV, as well as the launch of an EU Joint Action project seeking to improve EU countries’ response to the challenges of HIV, TB and viral hepatitis. That project involves 29 partners in 15 countries and it is called “INTEGRATE”.

The meeting will first examine the results and policy implications of the projects Optimising testing and linkage to care for HIV across Europe (OptTEST) and Operational knowledge to improve HIV early diagnosis and treatment among vulnerable groups in Europe (Euro HIV EDAT). In particular, it will address:

• Ways to overcome barriers to HIV testing with new approaches

• Tools for innovative testing strategies

• Improving linkage to care

• Cost-effectiveness and monitoring of HIV testing recent research and pilots

In light of the launch of a new EU Joint Action on HIV, TB, viral hepatitis and STIs’ (INTEGRATE), the second part of the meeting will focus discussion on the contribution of these projects to national efforts to achieve the targets of ending HIV/AIDS, TB and hepatitis as threats by 2030 as foreseen in globally agreed Sustainable Development Goals.

Please do not hesitate to contact us should you have questions.

Community response to the drug-resistant TB crisis in Europe Wed, 16 Aug 2017 21:13:25 +0000 On 12-15 May 2017, EATG, in collaboration with the Global TB Community Advisory Board (TB CAB), TBpeople (the Eastern European and Central Asian network of people with experience of TB) and Treatment Action Group (TAG), held a series of meetings in Brussels, Belgium discussing the situation of drug-resistant TB and its impact on the communities of people living with HIV in Europe.

A short video documentation of the meetings is available here.

A report from the meeting with the Belgian Senate on 15 May 2017 is available here.

Communities and civil society strongly united in strategic advocacy for TB UN High Level Meeting towards ending TB Wed, 16 Aug 2017 19:31:46 +0000 11 August 2017 – As we embark on the road to the United Nations High Level Meeting (UNHLM) on TB, the Stop TB Partnership, in collaboration with APCASO and Treatment Action Group (TAG), hosted a global meeting from 29-30 July, where more than 60 community and civil society advocates from 32 countries strategized on advocacy priorities promoting community-led, people-centered, rights-based and gender transformative approaches to end TB.

Given the unprecedented momentum towards ending the global TB crisis, highlighted by commitments by the G20 Heads of State, BRICS Ministers of Health, Global Ministerial Conference and the historical opportunity of the September 2018 UNHLM on TB, communities and civil society will further continue to mobilize, pushing their governments towards TB programs that are people centered, ambitious and bold, to achieve the 90(90)90 targets of the Global Plan to End TB, and to hold their governments and all stakeholders accountable on their commitments.

Dr. Lucica Ditiu, Executive Director of Stop TB Partnership noted, “It is time to do two things. First, we must be bold and strong in our vision. Second, we must be united and positioned around and for people affected by TB. As a TB community, we must band together, capitalize on the once in a life-time opportunity with the HLM on TB, bring TB in the minds and hearts of Heads of States and Governments and be ready to work for all people with TB.”

The convening in Bangkok offered a unique opportunity for communities and civil society actors to come together to identify, document and transform the challenges and needs of the missing, marginalized and those affected by TB into advocacy imperatives and strategies.

Two overarching themes were emphasized: financial and political support enabling communities to be central in all aspects of the TB response, including decision making processes; and, secondly, adoption of community-centered, rights-based and gender-transformative approaches at all levels, including in framework-setting and decision-making platforms, like the UNHLM and the Global Ministerial Conference.

Together, advocates agreed on a set of six “thematic priorities for action” to inform their advocacy on ending TB that will be key for the discussions and deliberations around the UNHLM as well.

1. Responsive and comprehensive systems for health to end TB
2. Scaled up, people and community-centered, rights based, gender transformative responses to end TB
3. Accelerated research and development to end TB
4. Highest standards of accountability and transparency to end TB
5. Adequate and sustainable domestic funding to end TB
6. Equity and access to information, commodities and services, to end TB

RD Marte from APCASO emphasized that, “these six priorities can guide our advocacy agenda – as a TB community. These priorities can be adapted and framed to the requirements of the Global Ministerial Meeting, the UN HLM on TB and any future forums for engagement ensuring a strong and coordinated community voice that resonates at all levels of the TB response.”

“As civil society and communities we need to be focused and determined. Without us at the forefront of this fight, holding our governments to account on their commitments we will never end this insidious epidemic,” said Timur Abdullaev, TB Affected Community Representative, Stop TB Partnership Coordinating Board.

To harness the momentum, key next steps have been agreed by community and civil society advocates. Firstly, position statements on each of the six-thematic area will be composed, endorsed and leveraged by the TB community to systematically and strategically inform and engage in national, regional and global dialogues and forums.

Secondly, regional and global roadmaps outlining critical points of engagement are now in development.

Thirdly, to ensure the constant and continuous presence and effective engagement of communities and civil society in dialogues and spaces leading to and at the UNHLM on TB, a resourced community advisory panel that fully represents, engages and empowers the grass roots is critical and ought to come into effect as quickly as possible.

“As community activists now is the time to be furious, loud and demanding. To end TB we are, and have to continue to be, united and ready to fight,” stated Lynette Mabote from ARASA.

All EATG annual reports on one page Tue, 15 Aug 2017 17:40:45 +0000 No more bulky printed booklets or large PDF files – view and read all EATG annual reports from the last four years on this page:

EATG has been working to support the communities of people living with HIV and to improve their daily lives in the region of WHO Europe for 25 years. These annual reports bear witness to not only the evolution of EATG but also to the many achievements we have had in daily advocacy for policy actions and treatment literacy.

Earlier reports are available from the EATG website, or can be requested from the EATG secretariat.

EATG signed on TAG call for TB research for pregnant women Tue, 15 Aug 2017 17:35:02 +0000 EATG signed a call initiated by Treatment Action Group (TAG, US) for support TB research for pregnant women that is addressed to the Task Force on Research Specific to Pregnant and Lactating Women (PRGLAC). This is a US body addressing gaps in knowledge and research on safe and effective therapies for pregnant women and lactating women. It will have repercussion out on the research community beyond the US.

For more information about the call, click here.

Centering LGBTI health and HIV at the UN’s 2017 High-Level Political Forum Tue, 15 Aug 2017 17:33:53 +0000 This year’s United Nations High-Level Political Forum (HLPF) theme was “Eradicating poverty and promoting prosperity in a changing world” which included an in-depth review of implementation of seven Sustainable Development Goals (SDGs), including SDG 3 on Health.

MSMGF reflected on how the HLPF can be added to the toolkit of advocacy entry points for activists concerned about the HIV and human rights of key populations and LGBTI people. Read the full analysis here.

The Paris Statement: HIV Science Matters Thu, 27 Jul 2017 21:59:57 +0000 Scientific knowledge is the backbone of the HIV response. Over the past 30 years, scientific research has shaped and influenced our understanding and management of HIV and has pointed continually to better ways to reduce or prevent HIV-related illnesses, improve lives for people living with HIV and prevent new infections. Science drives the HIV response. Yet our extraordinary scientific progress against HIV and our ability to address all of the scientific challenges still before us are threatened by a weakening resolve to fund HIV science.

To read the full Statement released at the 9th International AIDS Society Conference on HIV Science (IAS 2017), click here.

Input needed: TB Europe Coalition consultation on UN High Level Meeting on TB Wed, 26 Jul 2017 21:55:46 +0000

For many years progress against TB has been hampered by a chronic lack of political will and attention to tackle the world’s deadliest infectious killer. While this has been the case in the past, the upcoming two years provides a unique opportunity to turn the tide.

There are key opportunities to TB in the upcoming two years. The Global Ministerial Conference on TB in Moscow in November 2017, the Argentinian G20 (building off the success of TB inclusion in July), and the UN High Level Meeting on TB in 2018. Coordination of civil society and communities will be crucial in achieving ambitious and successful outcomes.

In order to shape the TB Europe Coalition’s position and ensure it is truly representative of the TB community, and in particular, the WHO Europe Region, the TB Europe Coalition has developed a survey.

You can find the link to the survey here:

The consultation will conclude on 9 August 2017. The TB Europe Coalition will collate all responses and formulate a WHO Europe regional wide position.

Take action to prioritize TB research for pregnant women Wed, 26 Jul 2017 21:53:41 +0000 As the world’s leading infectious killer, tuberculosis (TB) affects pregnant women, and increases the likelihood of poor birth outcomes and death. Despite the urgent need for better TB prevention and treatment options, pregnant women remain woefully neglected by research initiatives. But we now have a chance to change the trajectory of research for pregnant women with TB, if you take action by August 14th.

On August 21-22, the newly-formed Taskforce on Research Specific to Pregnant and Lactating Women (PRGLAC) will meet for the first time. This taskforce will advise the Secretary of the U.S. Department of Health and Human Services (HHS) on ways the government can fill knowledge gaps for pregnant women.

Join Treatment Action Group (TAG) in an effort to help prioritize research for pregnant women with TB, by signing on to a community comment to PRGLAC on strategies the U.S. government can take to support research and researchers focused on meeting the needs of this vulnerable population. Strategies include the development of a TB medicine registry modeled after the Antiretroviral Pregnancy Registry (APR), and investigating ways to support the earlier inclusion of pregnant women in research.

Take action today:

  • Click here to read and sign-on, individually and/or organizationally, to the letter and comment to PRGLAC.
  • Click here to download an informational brief on how a TB medicines registry can benefit pregnant women with TB.
  • Learn more about research issues for pregnant women with TB in a recently published community perspective in CID: Community perspective on the inclusion of pregnant women in TB drug trials.

Sign-on deadline: Monday, August 14, 2017 5:00pm EST

Activism takes center stage at IAS 2017 Wed, 26 Jul 2017 21:48:46 +0000 Read the articles published in and Science Speaks.

Brochure on people-centered TB care Wed, 26 Jul 2017 21:34:42 +0000 A new brochure, Moving to people-centered care: Achieving better TB outcomes, published within the framework of the TB-REP project highlights the position of civil society on quality people-centered care for TB patients.

What could help civil society organizations to be effective in fighting the TB epidemic? With whom, in the first place, is it necessary to establish communication and interaction for an early achievement of results?

These and other important aspects of TB advocacy are covered, briefly and concisely, in the brochure.

The material was compiled by joint efforts of TB-REP partners and activists from among people affected by TB.

The brochure on people-centred care was issued in the framework of the 3rd EU Health programme thanks to the operating grant given to the TB Europe Coalition by the Consumers, Health, Agriculture and Food Executive Agency of the EU.

To download the brochure, click here.

MSF sounds alarm over high numbers of people dying with AIDS in sub-Saharan Africa Tue, 25 Jul 2017 21:59:37 +0000 Global attention needed to prevent and treat AIDS in antiretroviral era, with 50% of hospital admissions in MSF hospitals already on treatment and showing clinical signs of failure.

Paris, 25 July, 2017 – An unacceptably high number of people continue to develop and die of AIDS1-related diseases across sub-Saharan Africa. They remain left out of the global HIV response without access to treatment that prevents AIDS or the medical care they need, says international medical humanitarian organisation Médecins Sans Frontières / Doctors Without Borders (MSF).

In MSF’s briefing paper “Waiting isn’t Option: Preventing and Surviving Advanced HIV”2, data from MSF-supported hospitals presented at the International AIDS Society (IAS) Conference on HIV Science in Paris today, highlights that in MSF-run and MSF-supported hospitals in Democratic Republic of Congo (DRC), Guinea, Kenya and Malawi, people arrive with such severe immune failure that overall mortality for patients presenting with AIDS is between 30-40%. Almost one third of those deaths occur within 48 hours.

The main causes of illness and death are due to treatment failure or interruption and late diagnosis leading to delayed treatment. Unlike in the early 2000s, when little treatment was available, more than 50% of AIDS admissions at referral hospitals supported by MSF had already started antiretroviral therapy (ART), with many showing clinical signs of treatment failure. “Despite extensive access to antiretrovirals, there has not been the expected drop in late-stage presentations of HIV in developing countries. What’s different is that among people admitted to hospitals, the majority are already diagnosed and many have been on treatment for several years. In Kenya, in Homa-Bay, where antiretrovirals have been available for years, half of the patients hospitalised AIDS cases show signs of treatment failure. We’re pushing to switch these patients to second-line antiretrovirals more rapidly,” says David Maman, MSF Epicentre epidemiologist.

At community level, MSF population surveys also show that a proportion of people living with AIDS in communities in southern and eastern Africa remain untested and untreated. Around 10% of people living with HIV in districts of Malawi, Kenya and South Africa had AIDS, of which 47% had never received testing or treatment. “People are still being diagnosed late. We need new ways to detect those left out, early on, before they arrive at hospital in often fatal condition or die at home without ever receiving care. Stigma and lack of information still remains high, leading to delayed treatment or no testing and treatment at all. This illustrates the need to complement increased antiretroviral coverage at community level with improved care for those on treatment for years,” says Gilles van Cutsem, MSF HIV Advisor.

Clinicians, including from MSF, have increasingly voiced concern over the lack of attention and means going towards the prevention and treatment of AIDS across Africa. The World Health Organisation (WHO) yesterday issued its first ever guidelines for the treatment of AIDS in low-resource settings. While this is a positive step forward, MSF calls for the urgent implementation of the guidelines with additional measures to address potential drug resistance and treatment failure.

Key interventions urgently needed to prevent and treat AIDS include the rapid rollout of ‘test and start’, CD4 baseline testing at ART initiation, routine viral load testing, point of care diagnostics for tuberculosis, improved treatment for cryptococcal meningitis, rapid switch to second-line ART for failing and advanced patients, and swift, effective and accessible treatment for opportunistic infections. MSF is also calling for models of care geared towards prevention, treatment and support for patients with AIDS, and free specialised hospital-based care free of charge for patients3.

MSF is also concerned that the situation will only be exacerbated as funding for the global HIV response continues to stagnate. Anticipated cuts in US funding to the Global Fund (17%) and PEPFAR (11%) from 2018 onwards will see many countries facing further grant restrictions. Shrinking funding envelopes and the need to preserve ART purchases will imperil community responses, including targeted testing and improved treatment literacy and adherence, while starving essential investments needed for health workers, laboratory and diagnostics.

“Each patient presenting with AIDS is a terrible testimony to the challenges to get timely access to test & treatment and to continue their ART uninterrupted. With global political will and funding for HIV on the decline, not only is the broader fight against the virus at risk go into reverse, but specifically these patients arriving at hospitals sick with AIDS will have any hope of reprieve snatched away,” says Mit Philips, MSF Health Policy Advisor.


MSF currently supports over 230,000 PLHIV on ART in 19 countries, with a focus on free quality care, including test & treat approaches, improved adherence support and differentiated models of care.

MSF directly provides or supports the provision of free hospital-based care for the treatment of AIDS in four hospitals in sub-Saharan Africa. In Homa Bay district hospital (200 beds) and referral health centres in Kenya, MSF supports and trains medical staff and provides medical equipment, laboratory support and drugs to improve the treatment of opportunistic infections (OI). In the Nsanje district hospital (200 beds), Malawi, MSF is training medical staff to improve diagnosis and clinical management of HIV/AIDS patients, while increasing laboratory services, pharmacy support and supplies of OI treatment. MSF runs a specialised AIDS care unit in Donka Hospital (31 beds) in Conakry and in Kabinda Hospital (42 beds), Kinshasa, DRC and supports Roi Baudoin Hospital, also in Kinshasa. These centres work with peripheral health centres to improve patient referrals and provide hands on training to improve the overall quality of care for HIV/AIDS patients. In all HIV projects, MSF teams are developing and implementing packages of diagnostics and treatment for HIV/AIDS, along with improved treatment literacy and adherence support.



1. Acquired Immune Deficiency Syndrome (AIDS) is defined as a CD4 count of less than 200 or WHO clinical stage 3 or 4.

2. Advanced HIV is synonymous with Acquired Immune Deficiency Syndrome (AIDS).

3. MSF’s report ‘Les Négligés de L’infection au VIH’ also released at IAS, shows the lack of referral-based hospital care for treating AIDS in Kinshasa, Democratic Republic of Congo (DRC).

IAS2017 – Community Paris Declaration published Mon, 24 Jul 2017 20:38:02 +0000 At the IAS2017 Conference, Paris, 24/07/2017

It is international AIDS conferences that ignite minds and mark turning points in the fight against HIV. This is sometimes a scientific announcement (the arrival of HAART in 1996) or a course taken on the battlefield against AIDS. This was the case in Denver in 1983 and in 1994 with the GIPA principle (see Bryan Teixeira’s article on this). This year, on the occasion of the “9th Conference on HIV Science” held in Paris from 23 to 26 July , civil society aims to mark one of these turns. For months, activists around the world are working on the “Community Paris Declaration” which was launched today.

Click here for the Community Paris Declaration: PCD FINAL

Click here for the list of signatories (EATG included): SIGNATORIES FINAL

Resolution on viral hepatitis adopted in Kiev Sun, 23 Jul 2017 08:59:57 +0000 On 19 July 2017, a stakeholders meeting on viral hepatitis initiated by Alliance for Public Health was conducted with involvement of the Ministry of Health of Ukraine, the Public Health Center, the WHO office in Ukraine and non-governmental organizations, including All-Ukrainian network of PLHIV and up to 30 NGOs from the whole country.

Participants discussed general vision and action-oriented proposals on situation with viral hepatitis in Ukraine and steps required for hepatitis elimination in Ukraine. As a result of the discussions, participants adopted a Resolution on viral hepatitis, which includes development and endorsement of National hepatitis elimination strategy and corresponding action plan. Also development of surveillance system, immunization strengthening, development and endorsement of the donorship policy, prevention services for general and vulnerable populations, guaranteed inclusion of vulnerable groups into treatment programs, etc were included into the Resolution.

The Ministry of Health of Ukraine and the Public Health Center attended the meeting as co-organizers.

The Resolution can be accessed here.

Rest in peace and in power: Remembering HIV activism pioneer Prudence Mabele Sun, 23 Jul 2017 08:54:33 +0000 Prudence Mabele, a veteran, pioneer and guiding light in activism for people living with HIV across the globe, passed away on July 10 in her native South Africa. Her death was reportedly due to complications related to TB. She was just two weeks shy of her 46th birthday.

Read more about the life of Prudence Mabele in an obituary published in

1st Interim Meeting for ESTICOM Thu, 20 Jul 2017 21:58:10 +0000 EATG participated in the 1st Interim Meeting of the ESTICOM project ( in Brussels on 17-18/7. ESTICOM is, to some extent, the continuation and revision of the much-used and very useful EMIS research about the health and prospects of men having sex with men in Europe.

The goal was to take stock on the progress after the first year of activities. The European-wide EMIS2017 survey about MSM and ECHOES about Community Health Workers proving services to MSM are getting ready to be launched in September. A big thank you to all members who have contributed to developing and testing these surveys! Once online, we will be asking you and your networks in the MSM/Community Health Worker community to fill in the surveys – to guarantee good coverage all over Europe. Based on the findings, tailored trainings for Community Health Workers are planned in 2018.

EATG Project Management and Evaluation Webinars – All you need Tue, 18 Jul 2017 16:48:44 +0000 EATG organised a series of webinars on the management, evaluation and monitoring of projects in advocacy. Hosted and presented by EATG member and social science researcher Ian Hodgson, the webinars discuss key terms and concepts around project management, change management, monitoring and evaluation in advocacy. The usual business concepts don’t always apply, or they can be used with some modifications only.

Introduction to the speaker Ian Hodgson: Ian Hodgson

Monitoring and evaluation in advocacy projects



Theories of change in advocacy



Tracking and documenting advocacy projects



 Any questions or comments are very welcome.
Apply now! STEPS – Cure Workshop at the EACS Conference in Milan Mon, 17 Jul 2017 21:58:00 +0000 If you are planning to attend the EACS meeting in Milan, Italy (October 25-27, 2017), you are invited to apply to attend the fourth community meeting on HIV cure, therapeutic vaccines and innovative approaches for a long-term remission of HIV infection. The meeting in organised by the European AISD Treatment Group (EATG):

STEPS – A community initiative to design the pathway to a long-term remission of HIV infection
The fourth community workshop about the “Cure research” organised by the European AIDS Treatment Group (EATG) will take place onOctober 24, 2017 approximately from 9:00 to 17:30.
It is open to people living with HIV with interest in this topic, peer educators, community journalists, advocates, researchers and healthcare professionals with an interest in the scientific research for the long-term drug-free remission of HIV infection. Click here to read the report from the previous workshop.

This workshop is not included in the conference registration.

To register for the workshop, please click here.

There are limited grants to support one night accommodation for few applicants. If you are a community member applying by Monday 21 August at 12h00 PM CET time, you can ask to the be covered for the night between October 23-24. The number of people who will receive this support will be very limited. We cannot offer additional support for travel expenses or extra nights accommodation. The outcome of the applications will be communicated by the end of August.

The final programme will be circulated few days before the meeting.

For more information and reports of previous STEPS meetings please click here or contact Giulio Maria Corbelli (Chair of the European Community Advisory Board and Coordinator of STEPS workshop).

Please feel free to forward this call  to other community representatives who might be at EACS 2017 or will be in Milan on that date.

US: Advocates launch Consensus Statement on HIV “Treatment as Prevention” in Criminal Law Reform Sat, 15 Jul 2017 21:45:24 +0000 The Consensus Statement on HIV “Treatment as Prevention” in Criminal Law Reform is meant to provide guidance for efforts to reform or “modernize” HIV-specific laws across the United States.

For more information, click here.

EU research policy: for peace, people and planet Thu, 13 Jul 2017 20:55:39 +0000 A Civil Society perspective on the next EU Research Framework Programme (FP9)

Brussels, 3 July 2017 – Civil society groups call for the next EU Research policy to shift its focus from jobs, growth and competitiveness to delivering global public goods for its citizens.

“With a needs-driven research agenda, the EU could concretely deliver impact for its citizens, address today’s societal and environmental challenges and contribute to a sustainable future for Europe. It could pave the way for the transition to a low carbon economy, sustainable food and farming systems and the development of new affordable health technologies,” says Fanny Voitzwinkler, Head of the EU office of Global Health Advocates.

Research that will make Europe and the world an environmentally sustainable, healthy and peaceful place to live must now be prioritised over research that delivers profit and economic return. The belief that boosting industry’s competitiveness will create jobs and ‘trickle down’ to the benefit of all people is misleading.

“Substantial portions of EU Research funds have been turned into subsidies for large corporations at a time when essential public risk assessment and research institutions are facing budget cuts. This is not acceptable: industry subsidisation is not what a public research policy should be about,” says Martin Pigeon, Research and Campaigner at Corporate Europe Observatory.

Private profitability is not a sufficient measure of public benefits – a position also defended by several renowned economists and confirmed by the widening levels of inequalities within our societies.

“At a time when the EU needs to reconnect with citizens, this next research programme should ensure full public return on public investments. There is need for real democratic and participatory decision-making to enable greater accountability over the use of public funds and ensure they have social and environmental impact. Public funds should not be used for military spending,” says Leida Rijnhout, Resources Justice and Sustainability Programme Coordinator at Friends of the Earth Europe.

Proposals for defence to become a much more prominent EU research area post 2020 represents a fundamental shift of the EU from a civilian peace-oriented project to a military-led one, with significant implications for the founding principles set out in the EU treaties.

“The EU is a peace project. There can be no place for military research. The EU should invest in research projects which contribute to the peaceful prevention and resolution of conflicts rather than subsidise research for arms production,” warns Laëtitia Sédou, European Programme Officer at the European Network Against Arms Trade.

To download the full paper, click here.

Tuberculosis makes the G20 Declaration Tue, 11 Jul 2017 21:33:23 +0000 The G20 Leaders’ Declaration carries an important section on antimicrobial resistance, and tuberculosis is identified as a priority for research and development.

On 7 & 8th July 2017, leaders of the G20 met in Hamburg, Germany, to address major global economic challenges and to contribute to prosperity and well-being.

Their Declaration, published on July 8, carries an important section on combatting antimicrobial resistance (AMR):

“AMR represents a growing threat to public health and economic growth. To tackle the spread of AMR in humans, animals and the environment, we aim to have implementation of our National Action Plans, based on a One-Health approach, well under way by the end of 2018.

We will promote the prudent use of antibiotics in all sectors and strive to restrict their use in veterinary medicine to therapeutic uses alone. Responsible and prudent use of antibiotics in food producing animals does not include the use for growth promotion in the absence of risk analysis. We underline that treatments should be available through prescription or the veterinary equivalent only. We will strengthen public awareness, infection prevention and control and improve the understanding of the issue of antimicrobials in the environment. 

We will promote access to affordable and quality antimicrobials, vaccines and diagnostics, including through efforts to preserve existing therapeutic options. We highlight the importance of fostering R&D, in particular for priority pathogens as identified by the WHO and tuberculosis.

We call for a new international R&D Collaboration Hub to maximise the impact of existing and new anti-microbial basic and clinical research initiatives as well as product development. We invite all interested countries and partners to join this new initiative. Concurrently, in collaboration with relevant experts including from the OECD and the WHO, we will further examine practical market incentive options.”

I am pleased to see this Declaration. It is timely and welcome, because AMR is a major health threat, and it is estimated that by 2050, 10 million lives a year and a cumulative 100 trillion USD of economic output are at risk due to the rise of drug-resistant infections.

Drug-resistant tuberculosis (DR-TB) is a perfect example of the threat posed by AMR. It is much smarter and cheaper to prevent DR-TB than treat it. And prevention of DR-TB requires better access to drug-resistance testing, high-quality treatment, access to new TB drugs, infection control, and increased political commitment with financing. Unfortunately, high TB burden countries are yet to seriously address these priority actions to tackle DR-TB. In many countries, only a quarter of MDR-TB patients are detected, and not even half of all patients with DR-TB are on second-line drug therapy.

A major reason behind poor TB control is the fact that TB is a low priority for many developing countries, and current TB budgets are insufficient to make progress in addressing DR-TB. Most National TB Programs in high burden countries are seriously under-funded, and, sadly, even emerging economies such as India are not spending enough on TB.

In this context, it may be more impactful for DR-TB control to be seen as one component of a comprehensive strategy to address AMR. While TB gets little attention, AMR is increasingly seen as a global health emergency and a security threat. Policy makers and donor agencies have prioritized AMR as a key issue for the global health security agenda, and the G20 declaration underscores this fact.

As I have argued previously, the door is wide open for the TB community to leverage this interest, and advocate for a well-funded, comprehensive AMR initiative that includes DR-TB as a key component. In fact, DR-TB could well be a pathfinder for successfully tackling AMR in low and middle income countries, and help make the case for greater investments. The TB community should therefore continue to advocate for including TB in the broader agenda to tackle AMR globally, and make sure DR-TB receives adequate funding and support.

The upcoming Global Ministerial Conference on TB in Moscow in November 2017, and the UN General Assembly High Level Meeting on TB in 2018 are exciting opportunities to push this agenda forward.

By Madhukar Pai


Further reading

Report highlights importance of preventing HIV among adolescent girls and young women Sun, 09 Jul 2017 08:55:40 +0000 In a new report, The Next Frontier: Stop New HIV Infections in Adolescent Girls and Young Women, Janet Fleischman, senior associate with the CSIS Global Health Policy Center, and Katey Peck, program manager and research associate at the CSIS Global Health Policy Center, discuss the importance of preventing HIV infection among adolescent girls and young women in East and Southern Africa. They highlight U.S. efforts through PEPFAR, including the DREAMS initiative, and outline next steps for the Trump administration and Congress.

MSF TB report: Out of Step 2017 Thu, 06 Jul 2017 17:06:52 +0000 New MSF report shows slow progress in adopting and implementing key TB prevention, testing and treatment policies and practices.

NEW YORK/HAMBURG/GENEVA, JULY 5, 2017—Two days ahead of the G20 summit in Germany, the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) and the Stop TB Partnership released a report that shows countries are lagging behind in tackling tuberculosis (TB), introducing the best diagnostic devices, and implementing globally-recommended policies. The third edition of the “Out of Step” report reviews TB policies and practices in 29[1] countries–which account for 82 percent of the global TB burden–and shows that countries can do much more to prevent, diagnose, and treat people affected by TB.

Although TB is preventable and treatable, it remains the world’s deadliest infectious disease, killing 1.8 million people in 2015 alone. During the same year, the majority (54 percent) of the 10.4 million people with TB lived in the countries represented at the G20 summit. Despite its deadly toll, most countries lag behind in implementing the new medicines and diagnostic tools available to tackle TB.

The G20 governments are major contributors to the global TB response, contributing more than $1.6 billion to the Global Fund to Fight AIDS, Tuberculosis and Malaria in 2016. These leaders must now mobilize their resources to get more people diagnosed, make effective treatments accessible to all people affected by TB, and reduce TB deaths.

“TB is an ancient killer, but we have the knowledge and the tools to tackle this disease; many countries are just not making use of these advances, and people are dying as a result,” said Lucica Ditiu, executive director of the Stop TB Partnership. “We’re calling on the G20 leaders to wake up and do something to stop the unnecessary deaths and the spread of TB, including drug-resistant TB.”

One of the major problems in the global TB response is that countries are not investing in tools to diagnose people in the first place. Only seven countries[2] in the report have made Xpert MTB/RIF—a rapid molecular test to diagnose TB and test for resistance to first-line TB drugs—widely available. This means that the majority of people in the 29 countries surveyed are still tested with a method that fails to detect many cases, or that requires a wait of up to several months to confirm the disease. This challenge explains why so many people remain undiagnosed and untreated; globally in 2015, based on the gap between estimated TB incidence and the actual number of cases reported, 4.3 million people with TB were never diagnosed.

“How are people supposed to get treated for TB when they’re not even getting diagnosed?” asked Dr. Isaac Chikwanha, HIV and TB medical advisor at MSF’s Access Campaign. “If countries don’t do more to make sure that people can be tested, it will be impossible to reduce preventable deaths from TB.”

For those who are diagnosed, some progress has been made to make newer, more effective treatment options and care available to ease the burden of living with TB.

For example, newer medicines for the treatment of DR-TB have demonstrated better outcomes than today’s regimens, which offer only a 28-percent cure rate for extremely drug-resistant (XDR) TB and a 52-percent cure rate for multidrug-resistant (MDR) TB. Seventy-nine percent of countries surveyed include the newer drug bedaquiline in their national guidelines, and 62 percent include delamanid in their guidelines. However, globally, only five percent of people who could have benefitted had access to these drugs in 2016.

Additionally, hospitalization for an extended period of time can limit the ability of a person to have a normal life and should be reserved only for the sickest DR-TB patients. The report found that 34 percent of the countries surveyed still require long-term hospitalization for treatment of DR-TB, which can fuel the spread of TB and increase rates of drug-resistance.

DR-TB treatment, which in some cases requires swallowing nearly 15,000 pills over up to a two-year period, can now be shortened to nine months. Shorter treatments help people to get back to a normal and productive life faster. However, only 13 of the countries[3] surveyed (45 percent) have made shorter treatments available.

“With TB, the clock is ticking rapidly, as every 18 seconds a person dies of TB. We have to change that,” said Sharonann Lynch, HIV and TB policy advisor at MSF’s Access Campaign. “The number of people diagnosed over the last four years has stalled, while the number of deaths has increased rather than decreased. Countries need to use new tools and step up the pace of their response.”

MSF and the Stop TB Partnership have launched a campaign called #StepUpforTB to urge governments to bring their TB policies and practices in-line with WHO recommendations (



[1] Armenia, Afghanistan, Bangladesh, Belarus, Brazil, Cambodia, Central African Republic (CAR), China, Democratic Republic of Congo (DRC), Ethiopia, Georgia, India, Indonesia, Kazakhstan, Kenya, Kyrgyzstan, Mozambique, Myanmar, Nigeria, Pakistan, Papua New Guinea (PNG), Philippines, Russian Federation, South Africa, Swaziland, Tajikistan, Viet Nam, Ukraine and Zimbabwe.
[2] Armenia, Belarus, Brazil, Georgia, South Africa, Swaziland, and Zimbabwe.
[3] Afghanistan, Bangladesh, Cambodia, CAR, DRC, Kyrgyzstan, Myanmar, PNG, Philippines, Swaziland, Tajikistan, Viet Nam and Zimbabwe.

MSF is an independent international medical humanitarian organization that delivers medical care to people affected by armed conflicts, epidemics, natural disasters, and exclusion from health care. Founded in 1971, MSF has operations in over 60 countries today. MSF has been treating people with TB for 30 years. In 2016, MSF treated more than 20,000 people with TB, including 2,700 people with multi-drug-resistant TB (MDR-TB). The Stop TB Partnership and its 1,600 partners are a collective force that is transforming the fight against TB in more than 110 countries.

UK: National standards for peer support Thu, 29 Jun 2017 19:10:41 +0000 The Standards were developed by a Steering Group of people living with HIV, representatives of NGOs who provide peer support for people living with HIV and of the British HIV Association (BHIVA), National HIV Nurses Association (NHIVNA) and Children’s HIV Association (CHIVA). Targeted consultation was undertaken with groups of people living with HIV in London and Liverpool, the youth group leaders of the CHIVA Summer Camp, and with individuals from across the sector. From August to September 2016 the standards were then out for open consultation through e-forums including UK-CAB and NGOs across the UK.

To access the document, click here.

Guide on community-based HIV prevention services launched in Cape Town Thu, 29 Jun 2017 19:06:52 +0000

A groundbreaking guide aimed at helping people to set up community-based HIV prevention services has been launched in Cape Town.

The extensive 227-page guide will be translated into five languages and sets out how to take HIV prevention services to the people in a bid to reduce the transmission of HIV in South Africa and other countries.

The guide was produced using knowledge gained from three independent community-based HIV prevention projects implemented by the Desmond Tutu TB Centre (DTTC) at Stellenbosch University between 2008 and 2017.

“The main goal is to produce a practical document in which we share with others the many lessons we have learnt and best practices we have developed in implementing community-based HIV prevention services,” said Sue-Ann Meehan, lead author of the Guide, who led the Community HIV Prevention Programme (COMAPP) for the DTTC.

Through the projects, integrated HIV testing services were provided by going door-to-door in communities in and around Cape Town, as well as from mobile caravans and tents and standalone centres close to busy public areas. The projects reached more than 60,000 homes and another 168,000 people in mobile and standalone testing sites.

Each chapter focuses on a different aspect of implementation, from engaging with stakeholders and communities to how to set up teams and conduct HIV testing services that integrate important other services including screening for TB, sexually transmitted infections and non-communicable diseases.

The guide, which includes case studies, tips, photographs, training materials and an accompanying video, was funded by the U.S. Centers for Disease Control and Prevention (CDC).

“CDC hopes that the guide will be widely disseminated as a trusted resource among community-based organisations, both within and beyond South Africa’s borders. Beyond that, that it also be distributed and shared with all those who are interested in using the guide as an empowering tool to educate, and therefore ultimately work towards eradicating HIV/AIDS. It is in rolling out projects like these – in collaboration with a full spectrum approach from all partners involved – that we are able to reach out and hopefully touch the prospect of an AIDS-free generation,” said Hilda Maringa, CDC Senior Public Health Specialist.

Through the release, CDC said it hoped to capacitate new partners and specifically community-based organisations, to deliver focused and evidence-based interventions, which had been well proven to have a measured and positive impact if implemented according to requirements.

The guide explains how Stellenbosch University has worked hand-in-hand with the health services, not-for-profit organisations and directly with communities in providing HIV testing services.

“We’ve made great strides in the fight against HIV/AIDS, but we cannot rest on our laurels and we have to challenge ourselves all the time to do even better. This guide and the manner in which it came about is an example of how we can achieve that,” said JP Smith, the City of Cape Town Mayco member for Social Services.

“I laud the different organisations involved in this process and the collaborative spirit displayed by all. There was a respect for stakeholders, such as the City Health Department; there was a willingness to listen and learn from stakeholders and there were shared learnings between the DTTC, which implemented the projects, the Health Services and other stakeholders,” added Smith.

It was evident in the projects that many people prefer to be tested for HIV in mobile sites and at their homes, as it is convenient, private and saves travel time to clinics, as well as waiting in queues. Through the projects, thousands of people learnt their HIV status, with HIV-positive clients linked to care at clinics.

“In this era of trying to achieve ambitious UNAIDS 90-90-90 targets and HIV epidemic control, it is important to move beyond HIV testing in health care facilities, which is vital but not sufficient. This practical guide provides the detail of “how to do it”,” said Karen Jennings, Head HIV/STI/TB for Cape Town City Health.

The guide was developed in English and is being translated into isiXhosa, isiZulu, Afrikaans, Portuguese and French. It dovetails with one of the main goals of Stellenbosch University, to make a tangible difference in people’s lives and be relevant within South African society. The guide is also consistent with the values of the Department of Paediatrics and Child Health, where the DTTC is based, in that family-and community-centered strategies are needed for improved HIV control in South Africa.

“Prevention is better than cure! As we now move into the era of successful mother-to-child HIV prevention programmes, we need to ensure that everybody is protected and therefore this guide is a wonderful step in the right direction,” said Professor Mariana Kruger, head of the Department of Paediatrics and Child Health.

It is key to learn from the South African experience. According to UNAIDS, South Africa is home to nearly 20% of the 36.7 million people living with HIV around the world. It has also the largest national antiretroviral programme globally, with 3.3 million people on treatment.


The guide can be accessed here.

New discussion paper on HIV prevention Thu, 29 Jun 2017 18:55:00 +0000 The Global Fund to Fight AIDS, Tuberculosis and Malaria is a major financier of national HIV responses and a vital source of prevention investments. By 2015, the Global Fund supported 3.6 million pregnant women to receive ARV prophylaxis to prevent transmission to their unborn children and distributed 5.3 billion condoms.

In its new strategy (2017-2022), the Global Fund has set ambitious new targets for HIV prevention. For example, the Fund aims to achieve a 38% reduction in new infections over the 2015-2022 period, including a 58% reduction in HIV incidence in adolescent girls and young women aged 15-24.

Investments in HIV prevention are particularly vital for key and vulnerable populations, who face a disproportionate burden of disease as well as disproportionate barriers to accessing services.

But is the Global Fund investing enough in HIV prevention to meet its targets?

The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that ending AIDS by 2030 will cost about $25 billion a year. About a quarter (26%) of this amount is required for HIV prevention.

ICASO and EANNASO examined funding requests and signed grant agreements from a sample of 25 African countries over the 2014-2016 funding cycle to determine how much the Global Fund is investing in HIV prevention interventions.

The aim of this discussion paper is to contribute to civil society and community groups’ advocacy efforts to increase Global Fund investments in HIV prevention interventions during the 2017-2019 funding cycle.

A Quarter for Prevention? Global Fund Investments in HIV Prevention Interventions in Generalized African Epidemics

Key Findings:

  • Among the sample, an average of 15% of HIV and TB/HIV Global Fund grants are dedicated to HIV prevention interventions. This is below the UNAIDS benchmark of 26% for prevention.
  • The Global Fund’s investments in HIV prevention are largely in line with disease burden. Countries with higher numbers of new infections request and receive more HIV prevention funding.
  • Advocacy from civil society and communities is absolutely vital, particularly on urging countries to request greater HIV prevention funding for key populations and adolescent girls and young women


Download the discussion paper:

Moscow TB meeting declaration gets a civil society makeover and is up for signers Wed, 28 Jun 2017 21:59:00 +0000 Individuals and organizations interested in signing on to a civil society version of the Moscow Declaration that could serve as a blueprint for commitments and action toward ending the global impacts of tuberculosis over the next decade and a half have one more day to do so.

The Global Fund Advocates Network worked with members, partners, and representatives of affected populations to edit the “zero declaration” that the World Health Organization posted for feedback June 13. The document is intended to spell out agreed commitments on the part of officials from governments around the world to increase investments, adopt policies, and accelerate responses across sectors to meet international and WHO goals to reduce deaths, incidence, and harms from tuberculosis over the next fifteen years, and ending the global epidemic by 2035. It will be the centerpiece of the Nov. 16 – 17 Moscow WHO Global Ministerial Conference on ending TB, that, in turn will inform next year’s planned United Nations High Level Meeting on TB.

The civil society edit brings changes in style, tone and substance to the original, including asserting the impacts of politics, inequities and insufficient funding on the spread of the disease among the most vulnerable populations, and committing to adapting policies to ensure that tuberculosis care and prevention standards recommended by WHO are followed everywhere. The draft document can be accessed for signature here. The deadline for signatures is 5 pm. EST Thursday June 29.

By Antigone Barton

Ireland: Call for PrEP in response to HIV crisis Tue, 27 Jun 2017 21:50:32 +0000 HIV Ireland wants drug available on HSE general scheme instead of prescription only

The director of HIV Ireland has called for PrEP (Pre-Exposure Prophylaxis) to be made available immediately to tackle Ireland’s HIV epidemic.

HIV Ireland and the Gay Health Network (GHN) are calling for PrEP to be introduced under the HSE general medical services scheme. Drugs supplied under the scheme are available through prescription from a doctor, for people with medical cards, and can be received from any pharmacy that has an agreement with the HSE, which covers the costs.

Currently, PrEP is available to buy only on prescription for about €400 a month.

HIV diagnoses nationally have increased by 35 per cent since 2011. A total of 512 people were newly diagnosed as living with HIV in 2016, compared with 485 in 2015.

PrEP is a once-daily medication that, in combination with safer sex practices, has been proven to reduce significantly the risk of sexually acquired HIV-1 infection among un-infected adults at high risk.

Executive director of HIV Ireland Niall Mulligan said the drug needed to be made available “as soon as possible” as Ireland was experiencing a “HIV epidemic”.

Mr Mulligan said the rise could be attributed to an increase in the number of foreign nationals who have already been diagnosed with HIV and have moved here.

He also said the rise in popularity of dating apps for men who have sex with men such as Grindr had “contributed somewhat” to the rise but was not the main reason.

“There is still a major stigma in relation to HIV and a worry or a fear around getting tested. People are worried they will be diagnosed with HIV so they don’t get tested.

“When someone is diagnosed and treated for HIV they are less likely to infect other people; it’s people who don’t know they are living with HIV who are the risk factor,” he said.

Mr Mulligan said PrEP alone was not enough and people who were on it should continue to get tested and use protection when having sex.

Mr Mulligan said there were potentially some side affects to the drug but they were minuscule and that people taking PrEP should continue to have check-ups.

“Taking PrEP does not remove personal responsibility as some have argued. It empowers people who want to look after the sexual health of themselves and others. PrEP alone is not the panacea; it is important to still use condoms, get tested and take responsibility for your sexual health,” he said.

Mr Mulligan said another issue with PrEP was that people in abusive relationships taking the drug were being forced to have unprotected sex, as well as sex workers.

HIV Ireland and the GHN launched a paper on Thursday (June 15) to provide evidence-based guidance on PrEP use in Ireland, using views of key populations affected by HIV, such as men who have sex with men (MSM).

The paper looked into guidelines by the World Health Organisation, the European Centre for Disease Prevention and Control, along with the NHS in the UK.

Author of the paper Dr Ann Nolan said of particular concern was the continued high level of new diagnoses among MSM.

“To reverse this alarming upward trend, PrEP must be introduced as a key HIV-prevention intervention. The message to the HSE arising from this study is clear: PrEP promises to be one of the most important innovations in the global response to HIV, and Ireland’s escalating epidemic suggests that we cannot afford to be left behind,” said Dr Nolan.

“It is evident from this Irish-centred study that a range of healthcare providers identify a need for Ireland to join the increasing number of countries making PrEP available to people at risk of HIV as part of a comprehensive package of prevention measures,” she said.

By Aine McMahon


HIV Ireland report: Pre-exposure Prophylaxis (PrEP) Scoping and Policy Options Review

Scotland: Charity calls for new focus to combat hepatitis C Tue, 27 Jun 2017 21:45:43 +0000 A charity has called for greater efforts to eliminate hepatitis C (HCV) from Scotland.

There are about 37,000 people living with the virus – but campaigners say as many again are undiagnosed.

A meeting in Edinburgh on Tuesday (June 27) will call on the NHS to alter its focus so Scotland can be free of the disease by 2030.

The Scottish government published a new policy on sexual health and blood borne virus treatment in 2016.

Scotland has a good record on tackling Hepatitis C, a disease affecting the liver, and often associated with drug injecting.

A greater proportion of those affected have been treated here than any other UK nation.

New cases

But the charity Waverley Care said Scotland also has the highest prevalence of the virus in the UK and 1,800 new cases are diagnosed each year, which meant a different approach should now be adopted.

It said an “informal inquiry” has been established into the eventual elimination of the disease, which chief executive Grant Sugden said was achievable as new treatment options mean Hepatitis C is now curable.

He said: “The NHS in Scotland is only treating the most severe cases at the moment.

“But we must work with those who have presented with the virus, but whose symptoms are not severe at the moment and crucially we must do more to diagnose those living with HCV, but who have not been diagnosed.”

The Scottish government said it had long been at the forefront of addressing Hepatitis C and was committed to playing its part in helping achieve the World Health Organization’s goal of eliminating the virus as a public health threat by 2030.

Ivan McKee, SNP MSP for Provan, who will chair the meeting in Edinburgh said: “To succeed, we need to support and encourage a flexible approach to help NHS Scotland and health boards to drive forward elimination by developing new models of care and improving access to screening, diagnosis and treatment.

“This will help to ensure Scotland’s ongoing commitment to addressing HCV in a robust and sustainable way and support those with HCV to clear the virus and move on positively with their lives.”

‘Right support’

Waverley Care has launched a scheme focusing on prisoners – it is estimated that one in five of those in Scottish jails are living with HCV.

Operating at Scotland’s largest prison, Barlinnie, it aims to support those released at the end of their sentence with services for housing, education and healthcare and help them access treatment for HCV.

Billy Davidson, Waverley Care’s prison link worker at Barlinnie, said prisoners who were HCV positive could easily obtain treatment while serving their sentence.

But he added: “One of the biggest challenges is them falling out of the healthcare system once released.

“Often it’s because they don’t have support with practical issues, like finding somewhere to live or getting a job.

“By working with prisoners to plan for their release, we can make sure the right support is in place and help them to access the treatment that will allow them to clear their Hepatitis C.”

AASLD expresses concern for Cochrane Review of DAAs Mon, 26 Jun 2017 21:40:43 +0000 AASLD and IDSA would like to express our serious concerns regarding the recent Cochrane Group Review concluding that there is a lack of valid evidence supporting the benefit of direct acting antiviral (DAA) therapy for chronic infection with hepatitis C virus (HCV), and its supposition: “the possibility of potentially harming people with chronic hepatitis ought to be considered before treating people with hepatitis C with DAAs.” Our review of this Cochrane publication suggests significant flaws in this analysis, yielding a misleading and a harmful conclusion.

The objective as stated is to assess the benefits and the harms of DAAs in people with chronic HCV. The selection criteria used only randomized clinical trials comparing DAA versus no intervention or placebo in patients with chronic HCV. Randomized trials in chronic HCV have only focused on the FDA recommended virologic endpoint of sustained virologic response (SVR), which is limited to a short follow-up period meant only to confirm permanent eradication of the virus from the blood stream. The Review’s conclusion stating a lack of evidence that SVR impacts long term clinical outcomes (morbidity) and mortality ignores both fundamental mechanisms and mounting published literature supporting the clear clinical benefit of SVR obtained with DAAs.

First, experience from earlier HCV therapies (based on interferon), for which long term follow-up data are now available, clearly demonstrate numerous health benefits including a decrease in liver inflammation as reflected by improved aminotransferase levels and a reduction in the rate of progression of liver fibrosis as reflected in paired liver biopsy studies (Poynard, 2002). Of 3010 treatment-naive HCV-infected patients with pretreatment and posttreatment biopsies from four randomized trials of 10 different interferon-based regimens, 39 percent to 73 percent of patients who achieved an SVR had improvement in liver fibrosis and necrosis in liver biopsies separated by a mean of 20 months (Poynard, 2002). Cirrhosis resolved in half of the cases. Portal hypertension, splenomegaly and other clinical manifestations of advanced liver disease also improved. Among HCV-infected persons with advanced fibrosis, SVR is associated with a more than 70 percent reduction in the risk of hepatocellular carcinoma (HCC) and a 90 percent reduction in the risk of liver-related mortality and liver transplantation (Morgan, 2013); (van der Meer, 2012); (Veldt, 2007). It is precisely for these reasons that the FDA recommended SVR as the primary endpoint for all contemporary HCV trials. SVR is a validated surrogate for long-term benefits. Based on these data, there is every reason to expect that analogous clinical benefits will be observed with cure of HCV infection obtained via DAAs after a sufficient follow-up period.

Second, even early data from the DAA experience support clear improvements in clinical outcomes that can be measured in the short term. Cure of HCV infection immediately reduces symptoms and organ dysfunction from severe extrahepatic manifestations including cryoglobulinemic vasculitis, a complication affecting up to 10 percent of HCV-infected patients (Saadoun, 2017); (Sise, 2016). Historically, HCV-infected persons with non-Hodgkin lymphoma (NHL) and other B-cell lymphoproliferative disorders achieved complete or partial remission in up to 75 percent of cases following successful IFN-based therapy for HCV infection (Gisbert, 2005); (Takahashi, 2012); (Svoboda, 2005); (Mazzaro, 2002); (Hermine, 2002). Recent data show that DAA regimens produce similar remission rates in NHL and even higher rates of SVR (Arcaini, 2016). Perhaps the most striking evidence of direct clinical improvement comes from data demonstrating the success of DAAs in patients with decompensated liver disease for whom SVR was associated with improved MELD scores and albumin levels in the majority of patients with Child B and C cirrhosis (Charlton, 2015). Indeed, success in this group in many cases obviates the need for liver transplantation, meaning that more donor organs could become available to other patients on the waitlist (Belli, 2016). Thus, even without long term follow-up to prove a survival benefit, there are already clear indications of the clinical benefit of SVR offered by use of DAAs to reduce disease complications.

AASLD and IDSA are troubled by the implications of this review for the ongoing international efforts to halt the HCV epidemic, and to give patients back their futures. In the face of the National Academies of Science, Engineering, and Medicine statement that elimination of HCV is possible by 2030 with optimal implementation of high efficacy therapy, we believe that the Cochrane Review does a grave disservice to these efforts and to patients living with chronic HCV infection, a disease responsible for tens of thousands of deaths around the world each year. We stand behind our Associations’ recommendations that all patients with HCV should be treated to prevent complications of this curable disease ( and we will continue to fight for the global elimination of this viral infection. In light of the evidence that we have cited, we urge the Cochrane Review authors to retract or to revise their conclusions.


Anna Lok, President, AASLD

William Powderly, President, IDSA


  1. AASLD-IDSA. Recommendations for testing, managing, and treating hepatitis C.
  2. Arcaini L, Besson C, Frigeni M, et al. Interferon-free antiviral treatment in B-cell lymphoproliferative disorders associated with hepatitis C virus infection. Blood. 2016 Nov 24;128(21):2527-2532. Epub 2016 Sep 7
  3. Belli, L.S., Berenguer, M., Cortesi, P.A., Strazzabosco, M., Rockenschaub, S.R., Martini, S. et al, Delisting of liver transplant candidates with chronic hepatitis C after viral eradication: A European study. J Hepatol. 2016; 65:524–531.
  4. Charlton M, Everson GT, Flamm SL, et al. Ledipasvir and Sofosbuvir Plus Ribavirin for Treatment of HCV Infection in Patients With Advanced Liver Disease. Gastroenterology. 2015 Sep;149(3):649-59. doi: 10.1053/j.gastro.2015.05.010. Epub 2015 May 15.
  5. Gisbert JP, Garcia-Buey L, Pajares JM, Moreno-Otero R. Systematic review: regression of lymphoproliferative disorders after treatment for hepatitis C infection. Aliment Pharmacol Ther. 2005;21(6):653-662
  6. Hermine O, Lefrere F, Bronowicki JP, et al. Regression of splenic lymphoma with villous lymphocytes after treatment of hepatitis C virus infection. N Engl J Med. 2002;347(2):89-94.
  7. Mazzaro C, Little D, Pozzato G. Regression of splenic lymphoma after treatment of hepatitis C virus infection. N Engl J Med. 2002;347(26):2168-2170.
  8. Morgan RL, Baack B, Smith BD, Yartel A, Pitasi M, Falck-Ytter Y. Eradication of hepatitis C virus infection and the development of hepatocellular carcinoma: a meta-analysis of observational studies. Ann Intern Med. 2013;158(5 Pt 1):329-337.
  9. Poynard T, McHutchison J, Manns M, et al. Impact of pegylated interferon alfa-2b and ribavirin on liver fibrosis in patients with chronic hepatitis C. Gastroenterology. 2002;122(5):1303-1313.
  10. Saadoun D, Pol S, Ferfar Y, et al. Efficacy and Safety of Sofosbuvir Plus Daclatasvir for Treatment of HCV-Associated Cryoglobulinemia Vasculitis. Gastroenterology. 2017 Mar 10. pii: S0016-5085(17)30269-X. doi: 10.1053/j.gastro.2017.03.006. [Epub ahead of print]
  11. Sise ME, Bloom AK, Wisocky J, et al. Treatment of hepatitis C virus-associated mixed cryoglobulinemia with direct-acting antiviral agents. Hepatology. 2016 Feb;63(2):408-17. Epub 2015 Dec 11.
  12. Svoboda J, Andreadis C, Downs LH, Miller Jr WT, Tsai DE, Schuster SJ. Regression of advanced non-splenic marginal zone lymphoma after treatment of hepatitis C virus infection. Leuk Lymphoma. 2005;46(9):1365-1368.
  13. Takahashi K, Nishida N, Kawabata H, Haga H, Chiba T. Regression of Hodgkin lymphoma in response to antiviral therapy for hepatitis C virus infection. Intern Med. 2012;51(19):2745-2747.
  14. van der Meer AJ, Veldt BJ, Feld JJ, et al. Association between sustained virological response and all-cause mortality among patients with chronic hepatitis C and advanced hepatic fibrosis. JAMA. 2012;308(24):2584-2593.
  15. Veldt BJ, Heathcote EJ, Wedemeyer H, et al. Sustained virologic response and clinical outcomes in patients with chronic hepatitis C and advanced fibrosis. Ann Intern Med. 2007;147(10):677-684.
Australian Health Organisations refute Cochrane Review of DAAs Mon, 26 Jun 2017 21:31:31 +0000 A joint Position Statement strongly refutes and rejects the findings of the Cochrane Review Report titled Direct-acting antivirals for chronic hepatitis C, published by the Cochrane Hepato‐Biliary Group on 6 June 2017.

Download the full statement here:

Australian Health Organisations refute Cochrane Review Report and affirm efficacy of Direct Acting Antiviral (DAA) therapy for hepatitis C

How six NYC activists changed history with “Silence = Death” Thu, 22 Jun 2017 21:45:29 +0000 The collective that created the Silence = Death poster is back after thirty years to recall its origins and launch new art.

Read the full story published in Village Voice here.

EATG is concerned by the Cochrane review of DAA treatment against HCV infection Wed, 21 Jun 2017 21:59:57 +0000 Direct acting agents used against hepatitis C infection are clinically effective and reliable.

EATG, the pan-European network of communities of people living with and affected by hepatitis C (HCV) and HIV point out that current direct acting agent (DAA) treatment options against hepatitis C infection, which provide a cure to 95-97% of patients carrying HCV, are effective and useful from an epidemiological and public health perspective. The patient community is alarmed by the reception and interpretation of the recent Cochrane review of these treatment options, and sees these interpretations as harmful, single-sided and misleading.

Brussels, 15 June 2017 – EATG as the issuer of this statement, representing communities of people living with and affected by HCV and HIV, doctors and scientists addressing HIV and co-infections in Europe, are extremely concerned about the reception and interpretation of the recent Cochrane review[1] of direct acting agent (DAA) treatment options against HCV infection. A recent article published in the Guardian[2] suggests that these treatment options are not clinically effective and do not provide an economically viable option against HCV.

A follow-up open letter from leading clinicians in the field, also published in the Guardian[3], points out some of the arguments that the patient community supports. We would like to express the patient community’s gratitude to the authors of this letter for standing up for their patients and the fight against the HCV epidemic.

We agree that the methodology of the Cochrane review is not suitable for determining the effectiveness of DAA treatment, and it moreover ignores some key factors such as the survival and improved quality of life of patients cured from chronic HCV infection. It also ignores epidemiological aspects, notably that DAA treatments provide a cure for HCV infection; this offers the possibility of stopping the HCV epidemic and even of eliminating it by reducing the number of patients living with the virus, a desirable possibility raised by several international organisations including the WHO[4].

We recognise that the Cochrane review observes the methodological traditions that contribute to the consistency and reliability of their findings across longer time periods. What we find especially concerning is the simplistic interpretation of the findings as it happened in the Guardian. Monitoring the reception of the review in the public and the patient communities, we find that these interpretations not only may deter patients from seeking life-saving and effective treatment, but also provide arguments for health policy decision-makers against funding and reimbursing these effective and proven treatment options on the basis of misinterpreted and flawed results.

Our main objections to the recent development are based on several arguments:

  • There is scientific evidence that sustained virological response (SVR) reduces mortality almost four-fold[5];
  • In a prospective clinical trial of patients with HCV-CV, DAA-based therapy restored disturbances in peripheral B- and T-cell homeostasis.[6]
  • Antiviral treatment for F0F1 patients at baseline should be considered due to (i) an evolution to severe fibrosis in at least 15%, (ii) a better response to treatment (SVR achieved in 48%), (iii) an improved survival in patients with SVR compared to those without SVR demonstrated in both F0F1 and F≥2 groups[7].
  • The Cochrane review refers to the lack of evidence for clinical effectiveness. However, the lack of evidence does not mean that there is a lack of effect[8].
  • Most of the studies included in the review were not originally designed to measure improved mortality and quality of life after achieving SVR, so a review of these studies could never show such clinical efficacy.
  • A large proportion of the studies included in the review were studies of DAAs that never entered the market.

In many countries, the current prices of DAA treatment regimens are unreasonably and unjustifiably high. Patient communities have invested years of work and advocacy into making sure that treatment regimens are accessible and become available to as many patients as possible. In countries like Portugal and Australia, concentrated efforts have led to price agreements that are sustainable in the long run. It is painfully detrimental and ill-advised if scientific evidence is misunderstood, skewed and misinterpreted to support policy and economic arguments that ultimately harm the patient community and public health.

As so far, the signatories of this statement and patient communities around the world will do all we can to stop and reverse the HCV epidemic. Most of us either lived or are living with hepatitis C, and our lived experience of survival, better quality of life, lower mortality and better general health is ignored by the methodology used in the Cochrane review and the public interpretations thereof.

We also hope that better access to DAA treatment options can be ascertained through methods other than dissuading patients, clinicians and health policy makers from a treatment that has been proven effective, easy and reliable, albeit incomprehensibly expensive. People living with or affected by hepatitis C deserve better.










Read or download the full statement here: Patient statement on DAA Cochrane report

‘Summer’s here… Where is PrEP?’ asks United4PrEP Wed, 14 Jun 2017 07:41:15 +0000 NAM, alongside a large number of HIV organisations and campaigners, working together under the banner of ‘United4PrEP’, has expressed serious concern about delays to the long-awaited pre-exposure prophylaxis (PrEP) trial in England.

Six months ago, in early December, NHS England announced it would be funding a PrEP trial for people at risk of HIV, giving 10,000 people access to the game-changing prevention treatment.

However, over half a year has passed since then and the trial has not materialised. After much pressure to release a timeframe, the government announced this would happen “in the summer”.

In the meantime, Scotland has announced it will make PrEP routinely available on the NHS for those at risk by July and Wales has announced plans to introduce a PrEP pilot by 17 July. England is falling behind.

United4PrEP, a coalition of charities and individuals campaigning for PrEP to be made available, expressed doubt that the ‘summer’ deadline will be reached, and calling for more speed and transparency from NHS England and Public Health England.

The United4PrEP coalition, which includes NAM said: “We are seriously concerned that NHS England and Public Health England are not fully committed to the PrEP trial that was promised over 6 months ago. They have repeatedly missed their own deadlines, and kept their plans vague so they cannot be held to account.

“At first we were told the trial would be ‘early in the financial year’. Then, when that didn’t happen, we were told ‘the summer’. Now we’re well into June, and the long-awaited PrEP trial is now looking as elusive as the British summer itself.

“We urgently need to speed up access to PrEP for all those at risk of HIV.”

Now that summer has begun, the countdown is on. Members of United4PrEP, including NAM, are increasing the pressure on NHS England and Public Health England to get PrEP to those in need as a matter of urgency. Campaigners have taken to social media, using the hashtag #WhereisPrEP to make their point.

NAM’s Executive Director, Matthew Hodson, commented, “We have seen the impact that PrEP, allied with other intensive forms of HIV prevention, can have on reducing new HIV diagnoses. NHS England has promised that an implementation trial will begin this Summer. We are gravely concerned that progress has been too slow and that people who are eager to access PrEP, and who would benefit from it, have been denied the opportunity.”

The Hepatitis C Trust responds to study on hepatitis C treatment Wed, 14 Jun 2017 07:40:45 +0000

In recent days there has been media coverage of a new study that casts doubt upon the effectiveness of new hepatitis C treatments. Given the potential that the coverage of this study has to mislead patients, The Hepatitis C Trust wishes to make clear that we have fundamental doubts as to the credibility of the research. Along with leading clinicians and scientists, we have written to The Guardian to express our concern. The letter states:

We are clinicians and scientists who have studied and treated patients with chronic hepatitis C virus infection over many years and patient groups who represent those affected by hepatitis C.

We write in response to your damaging article on the effectiveness of antiviral therapy. The Cochrane review that you highlight analysed clinical trials, which are by nature short term, where the sole purpose was to evaluate the virological efficacy of new antiviral drugs.  The trials were neither designed, nor powered, to assess mortality, so it is not at all surprising that the Cochrane review was unable to identify any impact on mortality.

Regulatory authorities and clinicians all recognise that clearing hepatitis C virus reduces mortality. Indeed, UK-based research demonstrates that oral antiviral treatment for patients with hepatitis C who also have cirrhosis substantially decreases mortality and morbidity (Cheung et al Journal of Hepatology 2016).

Current data from Public Health England reveal that there has already been an 11% reduction in mortality following the introduction of antiviral therapy as well as a 50% reduction in a need for liver transplantation for chronic hepatitis C infection, with the added benefit that more donor organs will now be available for patients without viral hepatitis.

These data are supported by similar analyses worldwide. The Cochrane analysis is fundamentally flawed, does not reflect international experience of the benefits of antiviral therapy and has the potential to deter patients with hepatitis C from seeking life-saving antiviral therapy.

The real story is one of remarkable, if surprising, success over just a decade, transforming an unpleasant and sometimes fatal disease into one that is readily cured. 

Graham R Foster, Professor of Hepatology, Queen Mary University of London

William  Irving, Professor of Virology, University of Nottingham

John McLauchlan, Professor of Viral Hepatitis, University of Glasgow,

Charles Gore, CEO, The Hepatitis C Trust and President, World Hepatitis Alliance

Graeme JA Alexander, President, British Association for the Study of The Liver


* Published by the The Guardian on June 13 2017

World Hepatitis Alliance: Findings from hepatitis C study should not deter patients from seeking treatment or governments from funding it Wed, 14 Jun 2017 07:39:15 +0000 The World Hepatitis Alliance is concerned that the findings of the Cochrane Review on the new direct acting antiviral (DAA) hepatitis C drugs could have a damaging effect on patient health without a proper understanding of the findings.

The Cochrane Collaboration, an independent global network of researchers, assessed 138 trials of breakthrough hepatitis C treatments found there is insufficient evidence to show if DAAs have or have not any long-term clinical health impacts. The findings based on a meta-analysis of 25,000 people in trials concluded “the lack of valid evidence and the possibility of potentially harming people with chronic hepatitis ought to be considered before treating people with hepatitis C with DAAs”. These findings are being used by several media outlets to call into question if countries should fund the treatment of hepatitis C using DAAs.

Following the launch of the report, the World Hepatitis Alliance spoke on behalf of hepatitis C patients across the world to Janus Christian Jakobsen, chief physician at a clinical trial unit in Copenhagen and deputy co-ordinating editor of the Cochrane Hepato-Biliary Group, to discuss the report in detail.

Following the call, it’s the World Hepatitis Alliance’s opinion that there is no evidence of long term health impacts. There is not enough evidence yet to judge their impact on health outcomes like mortality and morbidity, partly because of the way the trials were designed and partly because these outcomes take a long time to become apparent. Although there is good evidence that clearing the virus with interferon-based regimes does reduce mortality and morbidity, we do not yet have the evidence for DAAs. Equally, we do not yet have the evidence to be sure that the DAAs are safe over the long term and therefore, as with any new drug there is always the potential for harm that has not so far shown up. The main message, therefore, is that as yet there is insufficient evidence of what happens in the long term and that properly constructed trials are needed to investigate this matter further.

In light of this, the World Hepatitis Alliance is keen to continue to advocate strongly for immediate access to DAAs. Results from around the world have shown significant falls in deaths. For example in England the use of DAAs in people with decompensated cirrhosis in 2016 showed a fall of 11% in deaths among this very sick group of patients and a fall in nearly 50% in the need for transplants.

“As a patient-led and patient-driven organisation, we have seen, heard and experienced the real evidence of being treated with DAAs. The true story is one of remarkable, if surprising, success over just a decade, transforming an unpleasant and sometimes fatal disease into one that is readily cured.” said Charles Gore, President of the World Hepatitis Alliance. “What is absolutely imperative is that this Review should not be used as another excuse not to treat, when currently only 1.5% of people living with hepatitis C are accessing treatment worldwide.”

EATG joins new coalition calling on EU to take action to eliminate viral hepatitis by 2030 Fri, 09 Jun 2017 20:38:05 +0000 Launched at an event in the European Parliament on 7 June 2017, the ACHIEVE (short for Associations Collaborating on Hepatitis to Immunize and Eliminate the Viruses in Europe) coalition calls on the EU to take action to eliminate viral hepatitis B and C by 2030 in the WHO European Region, in line with the WHO Global Health Sector Strategy on viral hepatitis, the WHO Europe Action Plan, which build on and the UN Sustainable Development Goals (SDGs). The ACHIEVE coalititon comes together to speak with one voice representing patients and community, clinicians and researchers.

The coalition includes the following organisations: the European Liver Patients’ Association (ELPA), the Viral Hepatitis Prevention Board, Hepatitis B and C Public Policy Association, EASL International Liver Foundation, European AIDS Treatment Group (EATG), Correlation Network, the World Hepatitis Alliance and the Barcelona Institute for Global Health (ISGlobal).

Download the full press release here:

New coalition calls on the EU to take action to eliminate viral hepatitis by 2030

Call for Proposals: Youth Champions for HIV prevention among key populations in Eastern Europe Fri, 09 Jun 2017 20:34:44 +0000 The International AIDS Society (IAS) is currently inviting civil society organizations and HIV prevention service providers to nominate Youth Champions for HIV prevention among key populations in Eastern Europe to propose an advocacy project on practices that effectively address the prevention needs of young key populations: young men who have sex with men, people who inject drugs, transgender people and sex workers.

Eligible countries: Ukraine, Belarus, Georgia and Serbia

Deadline for proposal submissions: 26 June 2017

For detailed information, see the IAS Call for Proposals here.