Blog | EATG http://www.eatg.org European AIDS Treatment Group Thu, 16 Nov 2017 19:34:07 +0000 en-US hourly 1 https://wordpress.org/?v=4.8 Gus Cairns reports from the Sexual Health Workshop at the ILGA Europe 2017 Conference http://www.eatg.org/blog/gus-cairns-reports-from-the-sexual-health-workshop-at-the-ilga-europe-2017-conference/ Wed, 15 Nov 2017 12:12:53 +0000 http://www.eatg.org/?post_type=blog&p=6773

Workshop on Sexual Health, ILGA Europe Conference, Warsaw, Thursday 2 November 2017

The workshop was well attended and with a high level of engagement and interest in participants.

I and Paata Sabelashvili of ECOM presented, and Sophie Aujean from ILGA Europe moderated.

I presented on how community-based models of sexual health, HIV testing and treatment/PrEP could have a positive impact on HIV incidence and community ownership of sexual health in ideal conditions and ran briefly through the AVAC model of Good Participatory Practice in biomedical prevention trials could also be adapted to fit the creation of community-based prevention and rollout programmes and initiatives.

Paata presented on the challenges involved in developing such models in countries that were transitioning from Global Fund funding and where homophobia and oppression of other key affected populations was part of a more general upsurge in anti-western feeling. He emphasised the key role of community educators, or having accurate data with presenting cases, and of building alliances with key sympathetic professionals.

We then had a panel in which other members of ECOM presented on other aspects of their work regionally. They showed a very interesting short video about the wok of the EJAF-funded “Friendly Doctors” initiative in Ukraine – see https://friendlydoctor.org/en/ .

Informally, Lisa Power spoke briefly about European HIV and Hepatitis Testing Week and handed round leaflets for it and Magda Ankiersztejn-Bartczak spoke briefly about testing initiatives in Poland. We perhaps overloaded is a little with talks so the Q&A session was not as long as Sophie and I would have liked, but there were some very informed and interested questions from the audience about setting up community testing, about the science of PrEP, about extending PrEP initiatives to sex workers, and about the U=U campaign.

One particularly interesting initiative at the conference was the provision of 1-2-1 “consultancies” by community experts and I provided some after the workshop. I spoke to two people working with transgender sex workers in Novosibirsk and Ankara and to a couple of Polish gay club promoters who wanted to promote PrEP in Krakow.

I noticed also that questions about working with sex workers, PrEP, testing and U=U were asked in the following Friday morning plenary, which included Lisa as a panelist.

I would say that it was by far the most constructive ILGA conference I have attended in terms of a fresh understanding about how sexual heath work is part of their human rights remit, and a very positive collaboration.

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Bryan Teixeira – Report from the Key Populations Symposium in Paris http://www.eatg.org/blog/bryan-teixeira-report-from-the-key-populations-symposium-in-paris/ Sun, 23 Jul 2017 13:47:26 +0000 http://www.eatg.org/?post_type=blog&p=5633 Our communities have been fairly successful at martialling our energies to profile the needs of people living with HIV. These energies were based on the early Denver Principles that initiated the term ‘people living with HIV’ and also on the principle of the Greater Involvement of People living with AIDS.

Over three decades later, with significant evolution in the HIV epidemic as well as HIV sciences, can we now martial and expand our energies to more effectively include other affected populations and the obstacles they face to HIV services? This was the challenge of today’s symposium at the Paris City Hall on ‘Bringing key populations back to the centre of HIV’.

The symposium included people living with HIV as well as sex workers, men who have sex with men, people who inject drugs, transgender people, community actors and HIV activists. We were reminded by Dr Bernard Jommier, Deputy Mayor of Paris in charge of Health, that in 2014, mayors around the world came to Paris to sign on to their Paris Declaration to commit to end AIDS as a public health threat in their cities by 2030. Our symposium today was to be a key preparatory step in the publication tomorrow of our civil society ‘Paris Community Declaration’.

We discussed what would be involved in implementing our Community Declaration which is addressed to international organisations, political leaders and governments, the scientific community, the medical community, pharmaceutical companies, donors, and our own communities. We acknowledged that just as we expect governments to track how effectively they actually deliver on their declarations, we need to set up systems of accountability to track progress on our Community Declaration. We need to make sure there is high profile and wide buy-in. And we need leadership to make all this happen, starting with the organisations that initiated this process and including those who have since signed on.

In one year, at the International AIDS Conference in Amsterdam, we will have the first chance to report in on the progress on our Paris Community Declaration.

Bryan Teixeira – Paris, 22/07/2017

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Jackie Morton – A year of activism in 2016 http://www.eatg.org/blog/jackie-morton-a-year-of-activism-in-2016/ Sat, 04 Mar 2017 20:09:28 +0000 http://www.eatg.org/?post_type=blog&p=3957 EATG Chair Jackie Morton has summed up her experience as a leading HIV activist (and a new grandmother) in 2016 with a few images and some text. These are her personal memories.

A year of HIV activism in 2016

 

9 January 2016. Brussels

A Board of Directors (BoD) and governance meeting in Brussels (which was on high alert following the bombing of the airport.)

J1

16/17 January 2016. Prague, Training and Capacity Working Group

A snowy Prague.

J2 J3

5/6 February 2016. Board of Directors meeting in Beautiful Rome.

J5 J4

22 February 2016. Drury Lane, London.

My last event as CEO, Terrence Higgins Trust, London, which ended on the 29 February 2016.

J9

This is Graham Norton and me.

30 May – 1 April 2016. Berlin, Germany, presenting at the innovative Ageing – Over 50s Conference, TCWG & report writer.

J6  J7

16 – 17 April 2016. Board of Directors/Auditors meeting in Barcelona.

J8

Of course, while in Barcelona, I also visted the Sagrada Familia.

J10

29 April 2016 – UK-CAB LONDON.

8-9 May Governance meeting in Brussels followed on 30 May 2016, 15-17 CET, Skype Call M-Care project, 19 September M-Care TC – selection of applicants.

11 May Stigma Index meeting, Houses of Parliament, London.

3 – 5 June 2016. Frankfurt Germany BoD /DMAG meeting

J11J12

8 – 10 July 2016. Malaga, Training & Capacity Working Group

J13 J14

12- 13 August 2016. Athens. Board of Directors meeting

J16J17

22 – 26 September 2016. Sofia, General Assembly + BoD 20-21 Sept.

J18 J19

3 October 2016 – Appointed to the CRG HIV, NHS England, TCs on 3 Oct and 8 Nov 2016.

13 – 14 October 2016. BHIVA Conference, London

J15

Bryan Teixeira presenting at BHIVA on austerity & ending AIDS. I also became a member of the BHIVA Primary Care project presented by Dr Maryam Shahmanesh.

22 October 2016. Glasgow Conference – Report writer + BoD meeting 26-27 October.

J20 J21J22 

29 October, 2 and 22 November – BoD TCs.

4 November – UK-CAB, London.

24th November 2016

I missed the BoD meeting in Brussels for the greatest moment:

becoming a grandparent for the first time.

J23

Baby: Isaac Hamley Allun Morton

9th December 2016 – Presented at the Parliamentary event – Beyond Viral Suppression Conference Brussels.

16 December 2016 BoD TC.

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Tamás Bereczky – BMJ Blogs – Patient advocacy and the HIV community http://www.eatg.org/blog/tamas-bereczky-bmj-blogs-patient-advocacy-and-the-hiv-community/ Tue, 17 Jan 2017 14:52:50 +0000 http://www.eatg.org/?post_type=blog&p=3416

Tamás Bereczky: Patient advocacy and the HIV community

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Jackie Morton – First month as EATG chair http://www.eatg.org/blog/jackie-morton-first-month-as-eatg-chair/ Mon, 31 Oct 2016 10:42:48 +0000 http://www.eatg.org/?post_type=blog&p=2795 fullsizeoutput_19f3

 

A month in the life of the Chair of EATG

It has been a busy few weeks since returning from the GA on the 26 September, Sofia as the Chair of EATG. I have answered 383 emails, written two reports and attended the BHIVA conference in London October 13/14 (the report is on the website); spent a week at the HIV Drug Therapy Congress in Glasgow, October 20/26, followed by a Board of Directors meeting over two half days (26 to 27). (The action points and brief minutes will be out soon).

I have had two teleconference calls one EATG and a lengthy evening call following my appointment as the patient and public representation of the Clinical Reference Group (CRG) HIV for NHS England. This latter TC is excluded from the following calculation that outlines in these four weeks, I have spent 123 hours or 31 hours per week in my role as chair of the EATG.  Not bad for a volunteer!

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Bryan Teixeira – Continuing the dialogue: sex and drugs http://www.eatg.org/blog/bryan-teixeira-continuing-the-dialogue-sex-and-drugs/ Fri, 28 Oct 2016 13:25:10 +0000 http://www.eatg.org/?post_type=blog&p=2764 index

 

In April of this year, a ‘Chemsex Forum’ was held in London. People came from across Europe to discuss issues of health and wellbeing associated with the rising use of easily accessible drugs within sexualised contexts.

The aims of that first Forum included preliminary intelligence gathering and networking, identifying key trends across Europe, and sharing examples of effective clinical and community responses. I had the honour of chairing the two days of meetings. The dialogue now continues and plans are in process for a second Forum in 2017 in Berlin.

The Chemsex phenomenon cannot be disassociated from wider events happening especially in larger cities in Europe and globally. Austerity politics continues to result in the loss of safe community spaces for vulnerable groups like gay men and other men who have sex with men (MSM). Simultaneously, there is an expansion of new drugs that are easily available on the internet.  The internet also enables new apps for accessing potential sex partners. And there is an expansion of commercial opportunities to meet potential sex partners, including via sex tourism and the ‘party circuit’. In other words, we find ourselves in a perfect storm where safe community spaces are disappearing to be replaced by attractive new technological and commercial spaces.

Taking a ‘harm reduction’ approach to this phenomenon, it is most important to focus on drug usage that puts the user in difficulty relative to his physical or mental health, and/or his/her social, professional and personal relationships.  The risks are not insignificant. The more sexual partners, the more the risk of HIV and other STIs. Drugs can have unwelcome interactions not only with other drugs but also with prescription medications. One’s capacity to have sober interpersonal relationships can be weakened. And there is the question of determining when sex is consensual or not if one or both partners are using drugs.

Several clinical and community responses are being explored: closer collaboration between sexual health and drugs services, with access to some sexual health services available within drugs services, and vice versa; more community events and outreach to ensure better education and address stigma and prejudice; and the easiest possible access to healthcare appointments, testing/screening, PEP, PrEP, etc.

Going forward, a key consideration is the strength of the community response in support of the health and wellbeing of people engaged in Chemsex. Communities not only have a role in awareness-raising and education about the relevant issues, as well as addressing stigma and prejudice. They also have a role to play in the delivery of services and care relative to people engaged in Chemsex, including those who want to exercise a controlled drug use as well as those who want to withdraw from the scene.

Bryan Teixeira (October 2016)

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Jackie Morton – Report from the BHIVA Conference in London 13-14 October 2016 http://www.eatg.org/blog/jackie-morton-report-from-the-bhiva-conference-in-london-13-14-october-2016/ Mon, 17 Oct 2016 10:23:54 +0000 http://www.eatg.org/?post_type=blog&p=2577 Jackie

BHIVA supports free registrations for over 50 community representatives to attend their conferences and it is through this process I attended the autumn BHIVA conference that covered a wide range of important topics relevant to HIV, with accommodation and travel supported by EATG. This report is a snapshot of the event, outlines some of the key messages and topics discussed and does not cover all speakers and sessions.

Key presentations:

Wednesday 13 October commenced with:

ViiV healthcare symposium on HIV in Women : Science, stigma and society.

Chaired by Dr Annemiek de Ruiter, Senior Global Medical Director, ViiV healthcare,

Dr Paul Benn, European Medical Team ViiV, highlighted

  • 17.4m women in the world live with HIV, 2014
  • 1 in 3 patients were female attending clinics in 2014;
  • Women have poorer treatment outcomes.
  • Low numbers of women in clinical trials – Only two studies raised:
    • WAVES study (Women AntiretroViral Efficacy and Safety), the first-ever clinical trial of antiretrovirals enrolling only women
    • ARIA study ViiV

 

Dr Annemiek de Ruiter, ViiV discussed cultural aspects for women:

  • Global studies highlight 80% of women with HIV experience violence
  • Outlined studies across the world and impact of violence on women:
    • Nigeria – 50% WLHIV should be ashamed
    • Mumbai – 73% denied to marry
    • Vietnam -70% not safe for children with HIV to play
    • Malawi -5 0% isolated; Fear of disclosure

 

Dr Sara Paparini, Research Fellow, London School of Hygiene & Tropical Medicine

  • Presented impact of stigma and discrimination
  • Outlined stigma as an attribute, a product of relationship and a process – stigmatisation.
  • Two key approaches Individual and Society based.
  • Stigma can impact on a spectrum – depends on where the person is at a specific time.

 

Paula Evenden Co-Director Dragonfly Collective;

  • is a social venture tackling inequality and injustice, supporting socially conscious organisations to enhance their social impact and encourage citizens to engage in change.
  • Links into local domestic abuse & HIV organisations.

Commissioning in England for the future.

 

Professor Simon Barton Chelsea & Westminster Hospital discussed:

  • Five new models of NHS care:
  • Integrated primary and acute care systems
  • Multi-specialty care providers
  • Enhanced health in care homes
  • Urgent and emergency care
  • Acute care collaboration.

 

Sustainability and Transformation Plans (STPs) key local bodies, collective discussion forums which aim to bring together health and care leaders to support the delivery of improved health and care based on the needs of local populations. They are not statutory. Essential for local organisations to engage and influence the STPs.

 

BHIVA/Primary Care Project

Dr Maryam Shahmanesh presented the results of a one year program commissioned by BHIVA to inform the commissioning of high quality HIV care between specialist and primary care.

Recommendation for Commissioning

  • Person-centered and not facility based or disease specific commissioning
  • Commission care coordinators
  • Support development of shared EPR
  • Financial incentives and support for HIV testing
  • Resources and financial support for the primary care of PLHIV

 

Same Day Treatment

Dr Nneka Nwokolo Chelsea & Westminster Hospitals discussed the impact of starting treatment following a diagnosis of HIV, and the findings from 56, Dean Street Clinic, London. Although no data about starting treatment within a day of diagnosis she explained that some of the patients saw it as increased hope, which assisted psychological care for some. Coupling this with peer support many patients benefitted from earlier treatment.

Professor Saye Khoo, University of Liverpool outlined long acting treatment with anti-retrovirals. He talked through the LATTE study and the complexity of intramuscular injection of ARVs. ‘Results of the LATTE-2 study show that long acting injectable drug formulations may offer an important option for HIV maintenance therapy and we remain committed to developing such combinations as we enter phase 3 studies’ stated Wim Parys, M.D., Vice President and Head of Research and Development Global Public Health, Janssen.

 

PrEP: the politics and practicalities of implementation

Dr Laura Walters, University College London and (earlier in the day) Dr Michael Brady, King’s College London outlined what is happening with PrEP in the UK following the High Court hearing held on Wednesday 13 July 2016. The judge has now handed down his judgement, and has concluded that both local authorities and NHS England have the power to commission PrEP. NHS England is appealing the judgement. Key challenges : lack of evidence & gaps on dosing and risk, heterosexual issues, no prep studies on transmen and transwomen; ethics of buying PrEP outside of the NHS.

 

Key presentations :

Thursday 14th October commenced with:

Gilead Sciences Satellite Symposium Achieving a balance : planning ahead for the real world challenges we face in HIV.

Dr Iain Reeves Homerton University Hospital, London, Introduced the concept of frailty and the FRAX tool. Women over 50 should be assessed using FRAX every 3 years.

Dr Christoph Spinner, Technical University of Munich

Dr Paddy Mallon, Mater Misericordiae University Hospital Dublin, Ireland.

Explored the GENOYA ART therapy, ODEFSEY and DESCOVY therapies with the latter appearing as the preferred option in many global guidelines ; BHIVA, IAS.

 

HIV remission : viral suppression in the absence of ART.

Dr Sarah Fidler Imperial College Healthcare NHS Trust, London introduced the SPARTAC study which examined whether treating people recently infected with HIV with anti-HIV drugs for a short period of time could slow down the damage caused by HIV to the immune system and consequently delay the need to start long-term treatment.

 

BHIVA Community Symposium

Paul Clift Chaired the community symposium “What are the effects of ‘austerity’ on the HIV population.

Ms Marie Pousseau, Kings College Hospital, London, presented two cases of PLWHIV who have been affected by the ‘austerity’ cuts within the social housing services and loss of community support leaving the individuals in homeless situations.

Andrew Dalton, University of Sunderland presented a National Perspective: the current health of the UK-based HIV/AIDS organisations and the effects of ‘austerity’. He outlined the impact of cuts in health and social care funding on national charities following a research study he undertook. Many smaller organisations have already closed or merged with larger organisations due to the cuts in funding. He outlined the need for all charities in the field of HIV to work more in partnership to ensure the person living with HIV continues to benefit long term.

Mr Bryan Teixeira, EATG, presented Internal Commitments: ‘austerity’ and ending AIDS by 2030.

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Bryan Teixeira – Ending the AIDS Epidemic – Empty Slogan or Not? http://www.eatg.org/blog/bryan-teixeira-ending-the-aids-epidemic-empty-slogan-or-not/ Fri, 30 Sep 2016 15:33:55 +0000 http://www.eatg.org/?post_type=blog&p=2417 20160608_opening_960

 

Ending the HIV epidemic: Empty Slogan or not?

I am increasingly convinced that a key role of civil society organisations is to hold governments to their commitments. Saul Alinsky, the grand-daddy of community organising had his Rules for Radicals. Rule 4 states: “Make the enemy live up to its own book of rules.” While the term ‘enemy’ can seem harsh, the message of holding someone to his/her own rules and commitments is still a fundamental tactic in the struggle for greater social justice.

In the field of HIV, as in many others, governments have a history of meeting in grand cities around the world to make various public commitments. UN buildings in New York and Geneva were featured in the international adoption of various HIV commitments over 2015 and 2016, e.g., the Sustainable Development Goals (Goal 3 on Health), the Fast-Track Strategy, the World Health Assembly strategies, and the Political Declaration. There were photo ops and fanfare. However, what is too often missing are sturdy mechanisms for holding these same governments to their commitments. As a result, many civil society representatives can become cynical about these events and their promises.

In July, 2016, The Kaiser Foundation and UNAIDS reported that HIV donations fell in 2015 for the first time in 5 years by an average 13%. Kaiser Family Foundation Vice President Jen Kates, Director of Global Health and HIV Policy, noted:

“Donors faced many competing funding demands, including humanitarian emergencies and the refugee crisis, all against a backdrop of fiscal austerity in a number of countries. Looking ahead, donor funding for HIV remains uncertain as leading donors face changes in political leadership and the world is still digesting the effects of Brexit.”

The stage is set for governments to hide their lack of political will behind the argument that there is no money to deliver on their commitments. This is besides the fact that countries spent US $18 trillion in one year to bail out financial institutions during the harsh times right after the 2008 financial crisis, i.e., equivalent to 930 times more than spent on the total global HIV response in 2015.

In holding governments to their HIV-related commitments, civil society needs to focus more on at least two accountability strategies:

  1. Monitor and publicise how well governments implement their international commitments.
  2. Monitor and publicise how well governments align their own local/national strategies with their international commitments.

We need to become more familiar with the international HIV commitments made by our governments. And we also need to get savvier about tracking how our governments deliver on what they promised, both internationally and nationally.

The stakes are high: ending the HIV epidemic by 2030, saving over 10 million lives and avoiding over 17 million new HIV infections.

Bryan Teixeira

30/09/2016

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Matthias Wienold – Going shopping for PrEP http://www.eatg.org/blog/matthias-wienold-going-shopping-for-prep/ Mon, 12 Sep 2016 21:17:43 +0000 http://www.eatg.org/?post_type=blog&p=2211 Matthias 2

 

Going shopping for PrEP in Germany and elsewhere – no market for Truvada®?

Berlin, 15 September 2016 – I am a fairly rich guy from one of the richest countries in the world, so this logic should not concern me. I am a physician by training, so if I go to a pharmacy, I show my physician ID and go shopping without prescription. If I do that for my own wellness or health, I have to pay the official market price, which is legally defined in a major part (value added tax, compulsory rebate, fixed fees for wholesalers and pharmacists). I usually show my license card, ask for the price, cheaper alternatives, agree and pay.

My expenses on treatment of my diseases are usually covered by my health insurance (everyone living in Germany must be health insured, 90% are insured by statutory – not private – health insurers). In order to get the medication covered by my insurer, I have to see a statutory physician, get a formal prescription and then go to the pharmacy. This added loop enables my insurer to claim any further rebates from the medicine’s producer. These rebates are individually negotiated by more than 100 statutory insurers in Germany; more than 15,000 confidential agreements exist between insurers and industry in this closed market. The overall annual growth rate of insurance spending on pharmaceuticals is budgeted on a federal and state level. It is well above the inflation rate.

I don’t feel much of all that when I collect my insurance prescription at the pharmacy. My co-payments are fixed to a certain price per package received. This has the unwanted effect that some medications come in daily packaging, which can raise co-payments considerably. However, my overall co-payments are limited to 2% of my net income (1% if you don’t have a chronic disease). So, I should not complain.

I may even prefer to choose a particular brand of a drug. However, that may be costly. The statutory insurers mostly have contracts with providers of generics. They will only cover that part of the price that is “theirs”. Meaning that whatever is the best price they can get for an active substance in a certain formulation – that is the amount they will cover. The pharmacist will charge the extra. Certain drugs are exempted from this broad “genericalization”.

Even if I want to reclaim my own private shopping from my health insurer, I have a right to ask for reimbursement. It would help if I had a private prescription. It is a different format to mark it as different from the prescriptions “automatically” covered by the statutory health insurers. If I succeed with this individual request, I do not get reimbursed fully. The insurer will calculate how much he/she would have paid, and give me just that.

So much for the complex normality. That’s all a different ball park for pre-exposure prophylaxis for HIV (PrEP), as I am writing this two weeks after approval of Truvada® for PrEP by the European authorities.

Germany, surely one of the largest markets for PrEP, is without any access to the drug through legal markets. For four years institutions have mostly been in sleep mode over PrEP. So, we are in a number of ways unPrEPared:

– the product information in German (leaflets have to be in verey package) is not available, yet. The Deutsche AIDS Gesellschaft (the national association of medical scientific bodies and clinical researchers) points out that this has to be the case. Without such a translation the drug combination must not be sold for the purpose.

– the institutions and commentators are not sure yet, how Truvada® (the only product registered in Germany) is to be handled by the national regulatory bodies. Or if such a “private” issue should receive any public consideration at all. The health ministry points to an ongoing process. The producer remains silent and “hands-off”.

– the current market price of 840,00 Euros for a package of 30 tablets is far to high for private consumption (at least for me). At any rate that would be as much as the rent that I pay for the place I live in (which is also home to my husband and zoological menagerie). Considerations on how to lower that price rapidly are unheard of. The question, if the new indication “PrEP” for Truvada® will mean a longer duration of the patent for that purpose remains unanswered.

– the strict German laws on direct imports of e-commerce for pharma compounds do not allow me to order drugs online freely. I can only order drugs registered for the German market. Branded drugs are protected in e-commerce – meaning that I may not legally order a generic alternative to a patented brand drug (it must be explained that there is no “true generic alternative” to Truvada® as the trials leading to the recent approval on the European level were all done with branded drug).

So three weeks ago, when I visited India, I went shopping with my physicians licence. India is home to one of the most excellent and high quality private markets. The pharmacist confirmed sold me two packages of a combination drug with the same ingredients as Truvada® (the generic offered is registered for treatment of HIV-infection in India and other countries). For buying two instead of one package of 30 pills, I even got a rebate. Total cash order: 3,832.00 Indian Rupies (or roughly 55 Euros for 60 pills).

I checked through customs on my way home with my private medication. Up to three months of supply are considered to be allowed.

As a physician, I can only buy the branded drug in Germany, if I keep silent to the (e-)pharmacist about the intended purpose of using it for PrEP (how bizarre!). The price difference is explained to some degree in reference to other drugs for treating an already established HIV-infection.

On October 8th 2016 the European AIDS Treatment Group co-sponsors a debate on PrEP in Berlin. HIV im Fokus will bring together activists, officials, physicians and AIDS service organizations to discuss and to come to conclusions. The interest is immense and expectations are high that the participants will be able to find a way out of the current dilemmata.

Trying to stay legal in a clouded market. Give PrEP a Chance!

Yours truly,

Matthias

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Bryan Teixeira – Show me the money! http://www.eatg.org/blog/bryan-teixeira-show-me-the-money/ Fri, 26 Aug 2016 13:01:31 +0000 http://www.eatg.org/?post_type=blog&p=2067 10658925_10153903025840656_665137965785985581_o

 

Europe: Show me the Money!

Both through adopting the UNAIDS Fast Track Strategy in 2015 and the UN Political Declaration on HIV and AIDS in 2016, governments across Europe and around the world have publicly pledged to significantly increase their funding to fight HIV.

So where is the money?

As these two key documents were being developed, I was indeed surprised to see how little detailed internal financial planning was being done as governments got ready to approve them. You would think politicians would realise that their decisions have cost implications: two key questions to ask any politician is how much will his/her promises cost and how these costs will be met.

For example, in adopting the Political Declaration (http://www.hlm2016aids.unaids.org/wp-content/uploads/2016/06/2016-political-declaration-HIV-AIDS_en.pdf), the relevant governments in Eastern Europe and Central Asia have joined with others in committing to work towards reducing the number of new HIV infections among young people and adults (aged 15 and older) in their region by 75% to 44,000. Similarly, governments in Western and Central Europe and North America have committed to the same percentage reduction in new infections to 53,000.

The Political Declaration also commits governments to expanding community-led service delivery by 2030 to at least 30% of all service delivery. The governments also promised to ensure that resources allocated for social enablers like advocacy, community and political mobilization, outreach as well as human rights programmes would reach 8% of total AIDS expenditure by 2020. That’s less than 5 years from now!

However, as noted in a recent study published by the Kaiser Foundation and UNAIDS, donor government funding for HIV fell in 2015 for first time in 5 years (http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2016/july/20150815_kaiser). For most donor governments assessed, funding to support HIV efforts in low- and middle-income countries decreased from US$8.6 billion in 2014 to US$7.5 billion. A significant amount of donor funding comes from certain EU countries that are facing their own financial challenges resulting, for example, from the refugee crisis, years of fiscal austerity, upcoming possible changes in political leadership, and of course the still unclear impacts of Brexit.

So where does this leave us in Europe, with a rebounding HIV epidemic in key major cities among men who have sex with men, an ongoing ignored epidemic among migrants, and the fastest growing epidemic globally in Eastern Europe and Central Asia? The prospects are not looking good. I understand UNAIDS is finally considering a Plan B to their Fast-Track Strategy after choosing not to develop one previously.

At the release of the Kaiser Foundation document, Luiz Loures, UNAIDS Deputy Executive Director, was quoted as saying: “The decline in international funding for the HIV response is worrying.” Franky, I think it is well beyond just ‘worrying’ now: we only have slightly over 4 years to the 2020 deadline to make a significant dent in the epidemic if we are to reach our 2030 targets. That governments could have made commitments without having the resources or the will to deliver on them would be profoundly irresponsible.

No doubt, some countries will achieve their 2020 and/or 2030 commitments. However, we need to closely monitor governments against their HIV commitments, including the Political Declaration. And we urgently need a feasible Plan B.

Bryan Teixeira

 

 

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Mario Cascio – Prisons, drug use and peer education http://www.eatg.org/blog/mario-cascio-prisons-drug-use-and-peer-education/ Sun, 21 Aug 2016 09:56:59 +0000 http://www.eatg.org/?post_type=blog&p=2005

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When I entered the prison gate for the first time after 30 years, I was wondering what would be my feelings and what would be the thoughts crossing my mind.

I had been a drug user and I had been in prison 5 times for offences related to drug use, but this time it was different, I was entering the prison as an HIV activist as part of a project aimed at encouraging HIV and hepatitis testing and treatment adherence. It wasn’t part of the project, but I knew that part of my work would be aimed at fighting the high level of stigma and discrimination present in prisons.

Yes, I had been in prison and I knew what stigma and discrimination was all about. My last time in prison was in 1982; HIV was still an unknown disease. During that last stay, we had a lot of drugs coming in the prison, but not many syringes. I remember how common it was to share syringes, just to give you an idea, just referring to the prison unit where I was, where most of the drug users were placed, one single syringe could be shared among 30-40 people – an epidemiological bomb!

But let’s go back to my thoughts and feelings. You know, when you’ve given up drugs and have totally changed your lifestyle, you don’t really think about certain moments of your life that much any longer. But entering that prison gate, everything came back to me. Crossing those gloomy corridors, listening to the noisy voices coming from the prison cells, walking with the prison guards holding a bunch of keys opening one door after another, and finally reaching the place where we would be having our meeting, I plunged into my past, suspended halfway between who I used to be and who I had become. I was feeling uneasy and uncomfortable.

Prisons are parallel worlds where all the values are turned upside down, and all the things we treasure in our daily life become mere impossible objects of desire. This is what the loss of freedom is all about. A parallel world with new and often not understandable rules that you must comply to in order to survive. As I said, HIV was still an unknown disease so I didn’t personally know what living with HIV in prison meant, but I did know what it meant for a drug user. You would be considered a second-class human being, just one step behind would be the so-called migrants, and one step further down transsexuals and gay men, and at the end of the line would be the sex offenders, rapists and child abusers.

But when I entered the meeting place and people started to come in I suddenly came back to my present, to the reason I was there. I knew my words would have a deep impact on them only if they accepted me right from the start as one of them, someone who had been in prison just like them who spoke their language.

I was there as a peer educator, I had to filter my past personal experiences through my present in order to get the right message out to them, what HIV was all about, how it could and how it couldn’t be transmitted, which treatments were currently available, how it was possible to successfully survive these diseases, how people living with HIV and/or hepatitis were just as ‘normal’ as anybody else, how someone with HIV and who regularly took his medications was indeed less ‘dangerous’ than someone you knew nothing about.

This was my first of many meetings in Italian prisons.

In the course of our ongoing project ‘Health without Boundaries’ I have been able to visit over forty Italian prisons, meeting over three thousand prisoners. Considering the high prevalence rates of HIV, HCV and HBV infections in prison environments, with a high percentage of prisoners unaware of their status, our aim was that of encouraging as many people as possible to test for HIV, hepatitis B and C. The format consisted of double intervention, the first one more technical, carried out by an infectious disease specialist, and the second part would be about me and my personal experiences. The synergy between the two has been able to produce good results in the uptake of testing. In several large Italian prisons very high rates of testing have been achieved, as well as very high rates of people with HIV starting therapy and reaching undetectability. The same is happening for the treatment of Hep C with DAAs, however, there are still some difficulties. Moreover treatment with DAAs is still limited and not available to all in Italy, but many have been able to access treatment and successfully conclude their cycle of cure. Of course, the situation changes from prison to prison and from one geographical area to another. Comprehensive data are extremely difficult to collect; it often depends on the willingness and open-mindedness of the single prison administration.

Traditional interventions in health in prison settings have many weak points: communication barriers between prisoners and prison staff, difficulty in making prisoners interiorise messages on health, and therefore difficulty in making people on treatment reach a good level of adherence to therapy (many prisoners with HIV still tend to hide their pills or don’t take them at all for fear of being finger-pointed).

In the course of our meetings I’ve tried to tackle some of these problems, offering a space for debate and the exchange of experiences. I’ve listened to their doubts, to their complaints, answering their needs for more detailed and accurate information. Through my personal experience of a person who has been living with HIV, Hep B and C for over 30 years, who has gone through drug abuse and incarceration, who has been stigmatized and discriminated for all these reasons, who has never given up and is living a fulfilling life, I’ve tried to break the hard-to-change image that many of them might have of ‘drug addicts and people living with HIV/AIDS’. Through a humanistic approach, in which change is conveyed through the sharing of similar experiences, I try to promote the respect for others, healthy relationships, positive behaviours, and therefore a change in prison culture.

I do my best in transmitting a positive message to those who might discover testing positive to HIV and/or hepatitis and at the same time I try to encourage prisoners to take care of their health with a proactive attitude.

Certainly, you can’t do a good job on prevention in prisons if you don’t talk about sexuality and substance use. The Italian Guidelines say: “it is well-known how some ‘risk’ practices such as tattooing, unprotected sexual practices and the sharing of syringes are still quite common inside prison settings”, yet it is sometimes extremely difficult to openly talk about sex and drug use in prisons because of the dominant culture, strongly homophobic and prejudiced. And it is still extremely difficult to introduce the use of condoms and needles in Italian prisons, even if our guidelines do recommend them. Violence and sex abuse are quite common, and the educational work we do can effectively act as a deterrent that discourages prisoners from certain practices for fear of disease transmission.

At the end of each meeting, after all this exchange of information and debate, when I ask them who they think would represent a greater threat, a person living with HIV and on therapy or someone they knew nothing about, they would all look at me and at each other puzzled, amazed at the fact that something had changed in their way of seeing things. The period of detention does represent a unique opportunity for many prisoners, a moment in their lives in which they have time to reflect, a moment in which they are more receptive and open to suggestions.

Of course you never know to which extent your words have been interiorized, but it gives me great satisfaction to know that for some of them it has been an important experience that they will probably treasure for the future.

It also represents a unique opportunity for the health care system, making it possible to offer services to people who would otherwise be difficult to reach, both for lack of formal requirements, for example undocumented migrants, and for problems connected to behaviours legally and/or socially disapproved (IDUs, sex workers etc.). Prison health is actually never very high on the agenda, nobody actually really cares much about the health of prisoners, the unsaid thought is that they probably deserve whatever they get. Health officials and policymakers should be aware of the fact that prisoners may lose their freedom but they don’t lose their human rights including the right to health just like anybody else in the community, and that health in prisons is indeed a public health problem.

Providing testing, treatment and linkage to care services to people while they are incarcerated can improve the public health by saving lives, reducing disease transmission and reducing costs to the health system.

Peer education has proven to be an effective tool in educating prisoners, but it is certainly insufficient and unsatisfactory to propose behaviour changes without the support of harm reduction programmes (condoms, needle exchange, tattoo kits etc.).

One last thing, today one of the major challenges is guaranteeing the continuity of care for prisoners when moving from one correctional institute to another for various judicial reasons. This is particularly relevant if you think about someone on treatment for HIV or undergoing a cycle of treatment for Hep C with DAAs. Much has been done in this direction, thanks to the contribution of community-based patient organizations. But guaranteeing continuity of care upon release from prison is an even more challenging issue. It is essential for the effectiveness of treatment, so when prisoners are released they should be provided with needed medicines for a certain period of time, appointments for follow-up in their local clinic, and copies of their medical records, which is something that is currently just not happening.

Mario Cascio, EATG member and peer educator

 

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Tamás Bereczky – Accessing HCV treatment in Hungary on the thin path between legal and illegal http://www.eatg.org/blog/tamas-bereczky-accessing-hcv-treatment-in-hungary-on-the-thin-path-between-legal-and-illegal/ Wed, 10 Aug 2016 11:46:50 +0000 http://www.eatg.org/?post_type=blog&p=1915 IMG_1353

 

My journey through the disorienting maze of accessing HCV treatment in Hungary started little more than two years ago when I was diagnosed with HCV. Although first shocked and terrified, I was not exactly surprised as I was leading a rough life at the time: Going through depression, family and health issues, work pressure – substance use and compulsive sex were no strangers to my life.

However, the real shock came a little later when a FibroScan test and a practical examination by the doctor revealed liver damage at F3 and S2. The official reading was that I had had advanced liver damage only after about a year of HCV, and we were all wondering how this was possible at all. Being HIV and HCV co-infected meant that I had a very slim chance of clearing HCV spontaneously, and it didn’t happen. I could vaguely remember a period a couple of months before when I suddenly had lost quite some weight and felt slightly odd, but I put it down to my then regular use of amphetamines, vigorous exercise and plenty of partying. A later thorough discussion with the doctor about my anamnesis revealed that my liver had most probably been damaged in my teens when I had gone through several years of antibiotic treatment to manage a skin condition.

The search for treatment options started immediately. I was not only warned by several peers and colleagues that I should be treated immediately, as an EATG member and treatment activist I was also a regular enough participant of HCV and liver conferences and events to know that the sooner I have access to medication, the longer I could live and postpone irreversible liver damage. As I am also diagnosed with depression and had heard plenty of upsetting stories from friends and colleagues who had gone through interferon-based treatments, DAAs were clearly the only option for me.

The situation is quite complicated in Hungary. Once diagnosed with HCV, you are officially registered in the central registry for liver patients (called “HepReg”). HepReg is managed by hepatologists and the health insurance fund (there is a single, unified, state health insurance and social security conglomerate in Hungary). HepReg includes detailed data on the patients’ health with all and any relevant diagnoses and test results that affect your liver health. Your data in HepReg are available to you on the internet, and you can check your ranking on the treatment waiting list if you know the number of your application to the health insurance fund.

Patients are scored on the basis of their status: you get points for each condition or illness and on the basis of the state that your liver is in. Being HIV positive adds a lot of points, so does depression. More advanced fibrosis or steatosis add points to your score, too. Your score can go from 0 to any number. My experience from talks with doctors shows that about 50 points mean advanced liver disease, while 60 equal cirrhosis, over 60 decompensated cirrhosis. My current score is 48.5, which ranks me 357th on the waiting list. Mild liver enzyme elevations, and a viral load of 500,000, genotype 1 – This was my situation at the beginning of June 2016.

The final decision about ranking for treatment is taken by the Hepatitis Therapy Commission. This entity is composed of hepatologists, infectologists, liver researchers, and two patient representatives. The Hungarian Association of Liver Patients does not have a special chapter for HIV co-infected patients, and I have not established any official links with them so far. As usual in this region, patient organisations are chaired by prominent doctors rather than patients themselves. The Commission meets once monthly to review data in HepReg and to decide about treatment eligibility. Some people complain about a certain degree of corruption in this Commission as well, but I have not been able to confirm this in any way.

Theoretically, 60 patients can be treated per month with currently available DAA regimens. Most of the patients tend to be genotypes 1 or 2, so these regimens are Gilead’s Harvoni® and AbbVie’s Viekira Pak®, with MSD’s Zepatier® added recently to the list of available treatments. Although the final, actual price of these treatments is not public, we know that companies are paid something very close to the list price; payment is due per completed treatment rather than the duration (12 or 24 weeks all the same); companies also must cover related diagnostic costs; and that IFN based treatments are still the standard of care even though many try to avoid them. One company representative reported the same numbers, but also that orders were stopped regularly.

Not unknown other parts of the world, the constant lobbying activities of pharmaceutical companies compounded by persistent corruption on all levels in health care in Hungary make the entire system completely opaque, frustrating and even Kafkaesque.

So once again, theoretically I could have become eligible for treatment (most probably with Harvoni® or Viekira Pak®) within one year. But treatment eligibility now starts at 60 points in HepReg (used to be 50), and I am at 48.5. I should be a lot sicker to be treated – I was not really keen on that. Also, as there is a constant influx of new patients into the system, the ranking is really just a vague indication, as many of the patients are diagnosed late, thus land in the system with a higher score.

Another problem is that treatment availability is stopped regularly. “I don’t know what’s going on, but nobody has been put on treatment for months again”, said one senior HIV physician in June 2016. Another liver doctor said that IFN free treatment was available in severe cases only, and she also bemoaned the contradiction that these patients see an elevated risk of decompensation, side effects and worse outcomes than patients whose liver is in a better shape.

My search for treatment was not an easy one. First of all I wanted to make sure that I got to the bottom of what the system in Hungary offers. After all, I am good tax paying citizen, never missed to pay my health insurance and have been working diligently as a treatment activist for many years. But I hit a wall very soon. The physician responsible for treating HIV and HCV co-infected patients did not examine me at all, only sent a message through one of the nurses that I should not worry, I had time to wait for treatment, many people were much sicker than me, and that it would take years for me to get treated. My regular HIV doctor is retired and no longer has the license to prescribe such an expensive regimen as DAAs are in Hungary. Fellow patients and peers, even physicians from the USA and Europe kept telling me that I should get treated immediately. The entire situation made me anxious to the point when I simply stopped going to or reporting from liver related meetings as I could not bear the pressure.

I stopped drinking alcohol entirely, stopped taking drugs, lost some weight and upped my exercise regimen to keep my metabolism in check. Sugar and fat were reduced, and I consulted my physician about other ways to ease the burden on my liver. I have been drinking plenty of thin coffee and water, and have tried to reduce the amount of anti-anxietic drugs I take. In the meantime, I was also looking for alternative solutions such as buyers’ clubs or perhaps a trip to India to obtain generic medicines. I was so desperate that I sought permission from the EATG executive director to talk to leading representatives of pharmaceutical companies to help me. Alas, I did not receive any help from them beyond sympathetic words and warm hugs. I suppose they also work on the basis of rigorous legal rules on conflicts of interest, and internal company interests are certainly a priority over one patient’s health. My plea to several peers and EATG members to help me get access in another country were unsuccessful as well – but then access at the current prices is extremely difficult, or even impossible, in practically all European countries.

Finally I changed from the official HIV+HCV doctor (who would not talk to me anyway) to a liver doctor in a major addiction clinic in Budapest. She has been completely open-minded and curious to understand how alternative ways would work in getting access. Finally, my blood-work and numbers were done, an ultrasound examination confirmed that I had no liver cancer or severe damage. So I could write to a renown German doctor for a therapy recommendation and help to access generic medicines from India or elsewhere. He connected me with Giten Khwairakpam. Giten was extremely helpful and offered Safino L®, the generic version of Harvoni® at a price of 1050 USD including delivery by international courier.

I obtained a prescription from my new liver doctor for the generic names of the compounds sofosbuvir and ledipasvir. I transferred the money, scanned and sent to Giten my personal data and the prescription. The pack was here in four days. One final surprise was that although no customs duty is payable after medicines for personal use in Hungary, the 27% VAT is charged on every item imported. So the final bill also includes another 307 USD paid to the state.

The hole in legal regulations is slightly tricky. Travelling to India and buying the medicines there, and then importing them into Hungary for personal use is not an issue at all – anyone can do it. This is the reason why one liver doctor in Hungary is already teaming up with a travel agency to bring patients to India so that they can buy their pills there. However, sending the same amount of the same pills by courier seems to be more problematic.

I took my first pill today. I will describe my final experience with the treatment later, and I am happy to answer all your questions. Giten also agreed to help others who are in need. He and his organisation have already helped many patients in East-Europe, especially Ukraine. But this experience seems to be relevant in Central Europe, too, and I hope that some can learn and benefit from my experience so far.

 

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Tamás Bereczky – Guerilla testing http://www.eatg.org/blog/tamas-bereczky-guerilla-testing/ Sat, 06 Aug 2016 09:58:55 +0000 http://www.eatg.org/?post_type=blog&p=1895 13925103_10155199870438079_108391383788361977_n

 

I am doing free and anonymous HIV and syphilis testing with my colleagues of Alternatíva Alapítvány at a downtown cafe in Budapest this weekend.

Hungary has one of the lowest testing rates in Europe, so scaling up testing and counselling is truly essential in this setting. While we use the usual triple rate for the estimated number of PLHIV in Hungary, many say that a quadruple rate would be more realistic: We can assume that there are four times as many people living with HIV as tested and registered. The MSM population is hardest hit with app. 80% of PLHIV coming from the gay and other MSM communities.

Curiously, while HCV prevalence is very high in the PWID population, the rate of HIV is very low in this group – clearly a disaster in the waiting.

However, the legal environment is far from clear. Low threshold, demedicalised testing is possible only if one can prove that testing and counselling are done in a context where substance use and harm reduction are an issue. Alternatíva Alapítvány is a harm reduction organisation, and the testing procedure is complete with a questionnaire to assess sexual and other (substance use) risk behaviours. 

But if we wanted to do testing in an MSM setting that is concerned with safer sex and gay populations, then a doctor is needed to be present at the testing. However, even in this case activists or peer helpers with a proper testing and counselling certificate can perform the tests themselves. This is the argument we use to justify why we can and should move testing into less conventional environments and leave the predictable relative comfort of harm reduction services and gay saunas.

Another issue is the volatility and precariousness of the campaigns. There are no secure funding streams for community based organisations to make sure that there is a safe supply of tests. Also, we have to make do with whatever is available for the money we have. This time combination HIV+syphilis rapid tests are used, but one never knows what donations will be available next, or what the next grant allows one to buy.

HIV is very low priority in low prevalence settings. Testing is also not important for the government or health policy in general, and the civil sector often needs to be creative to the level of guerilla to make sure that testing reaches everyone.

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Bryan Teixeira on the unfolding HIV/AIDS disaster in Eastern Europe and Central Asia http://www.eatg.org/blog/bryan-teixeira-on-the-unfolding-hivaids-disaster-in-eastern-europe-and-central-asia/ Fri, 22 Jul 2016 11:09:30 +0000 http://www.eatg.org/?post_type=blog&p=1610 Unfolding HIV disaster in Eastern Europe and Central Asia

The report, Let’s Not Lose Track!, was published in June 2016 (SEE attached). It describes the dire HIV situation in Eastern Europe and Central Asia (EECA), the only region globally that failed to achieve Millennium Development Goal 6 on HIV.

Highlights of this report include:

  • 96% of new HIV infections were among key populations and their sexual partners in 2014: 51% were among people who use drugs (PWUD), 31% among sexual partners of key populations, 6% among sex workers (SW) and 6% among men who have sex with men (MSM). 
  • In some cities, PWUD face up to 60% HIV prevalence and MSM, now accounting for an increasing portion of new infections, face a prevalence up to 25%.
  • Approximately 47% of PLHIV regionally do not know their HIV status.
  • Globally, 41% of all adults living with HIV access antiretroviral therapy (ART), while in EECA, ART is accessed by only 18% of adults living with HIV.

The report was developed by the initiative of East Europe & Central Asia Union of People Living with HIV with contributions by several regional networks: East Europe & Central Asia Union of People Living with HIV (ECUO); Eurasian Coalition on Male Health (ECOM); Eurasian Harm Reduction Network (EHRN); Eurasian Network of People Using Drugs (ENPUD); Eurasian Women’s Network of AIDS (EWNA); European AIDS Treatment Group (EATG); International Treatment Preparedness Coalition in East Europe & Central Asia (ITPCru); and Sex Workers’ Rights Advocacy Network (SWAN).

Regional governments seem increasingly unwilling to support services for these very populations. Low threshold and easy access HIV services are relatively rare in the region except where funded by foreign sources. The report notes that International sources still account for 93% of funding for programs for sex workers, 96% for programs for MSM and 78% for programs for PWID. All this at the same time as several countries in the region are moving to limit the activities of foreign-funded NGOs, resulting in closure of NGO-led HIV services, e.g., in Russia and Azerbaijan.

The report makes several recommendations. For example, it calls on Governments to acknowledge the HIV burden borne by key populations and ensure that 90% are reached with targeted low threshold programming. Governments also need to institute sustainable systems of ARV medicines procurement that ensure the lowest possible prices for effective medicines. Similarly, Donors, including The Global Fund to Fight AIDS, Tuberculosis and Malaria, need to adapt their eligibility criteria to ensure equitable access to services across the region where this is not provided from domestic sources.

The report is a challenge to EATG and its members to work collaboratively to address this catastrophe that is unfolding among us. Without urgent action, the Fast-Track window to 2020 will be missed and the EECA region will not achieve the Sustainable Development Goal 3 target to end AIDS as a public health threat by 2030.

View or download the supporting documentation from the High Level Meeting here: EECA-Position-Document-HLM

 

Bryan Teixeira

July 2016

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Dr. Matthias Wienold on the participation of HIV patients in clinical research http://www.eatg.org/blog/dr-matthias-wienold-on-the-participation-of-hiv-patients-in-clinical-research/ Sat, 25 Jun 2016 08:51:15 +0000 http://www.eatg.org/?post_type=blog&p=1171 Matthias 2

Participation in clinical research (HIV) 1991 to 2016

Clinical research is a horrible business (quotes taken from various interviews and communication with people living with HIV). It is a constant fight over resources, promotion, moral and ethical issues, who is right or wrong, and it is very personal. Not only – but maybe a bit more – if you represent patients. Community participation is self-revealing (“I suddenly realized that this is happening in my own body”), self-empowering (“I was introduced as a doctor”) and a difficult way to chose (“It takes two to three years of learning before you can speak their language.”). I know that from doing my own research and participating in clinical research from a first person perspective. As patients we have much to gain from clinical research. And we place big stakes in the advent of improved medicine. In the end we are also the ones taking the risks. Personally.

Do people with HIV have their own agenda in clinical research? We have historical evidence to prove that unwanted effects of treatment (depression, nightmares, lipodystrophy) and treatment approaches (triple combination therapy, pre-exposure prophylaxis, cure) were logged into the research programming only through the insistence and ingenuity of patient community representatives. Beyond that, clinical research has proven to be not the closed book that everybody believed it was. There remain a lot of concepts to be further promoted and developed (compassionate use, parallel access, the provision of a “research compound” between the official end of a trial and the availability of the “drug treatment” in health care) that originate from patients’ communities.

Patients’ traces are also to be found in the frameworks of clinical research. A pharmaceutical company that is completely “lab-oriented” is considered a high-risk venture capital investment; a no-go to bring a compound through clinical research and into markets. If you start a successful company that way – chances are that somebody else will come and swallow whatever you had in mind. So, the general wisdom, today, is that you cannot rake the full benefit of your property investors unless you work with the patient community. Some parts of the literature and some speakers I heard call it “Making use of the patients” quite frankly. In a mechanistic world that is like patients are to become a part of the well-oiled machinery. From a “lab-oriented” perspective the patient-world offers eureka moments.

Let me propose that clinical research is a horrible business that becomes less horrible and more centred on “helping people to survive”, when a patient is in the room in all discussions and considerations. This may have nothing to do with the patient in person but rather with the fact that (a) there is a perception of external monitoring, and (b) there is hope for an unknown fact coming out of the mouth of the “animal”. Community representation (participation from beginning to end) has developed considerably based on demands coming from patients.

The communication around clinical research has also changed much as a result of patient community activities. Transparency of clinical research has greatly improved from being completely closeted to including public registries and patients participating in scientific conferences as discussants. Patients’ representatives serving on data and safety monitoring boards and in regulatory authorities can no longer be called a “myth”. They are in the hundreds, today.

Today, I am looking at where we stand and what I feel about clinical research because 25 years ago, I contributed to writing the European AIDS Treatment Agenda (EATA). We asked for new trial designs, respect to patients’ concerns, direct participation and generous amounts of information to lay people. The “weird characters” we had been until then – suddenly had a common ground to start from. In the European Union, our marks are on the European Medicines Agency, on the European Centre for Disease Control and on major clinical research programs and initiatives. In its early days, the European AIDS Treatment Group (founded seven months after the publication of EATA) used it as its “business card” and point of reference for common activities across the EU and neighbouring countries. It was “our” policy statement and mark-up. If you could understand the text – you either had to be a committed treatment activist or a researcher, yourself.

Read the European AIDS Treatment Agenda here: EATA_1991_Florence_IAC

Working along the agenda has resulted in numerous means to improve the lot of patients in clinical research. For some it provided the basis for sustainable income, for some it was their “moment of fame”, some were provided “with preferential treatments” and some relate to the organization to promote the EATA as “my activist home”. EATG has be praised for saving thousands of lives. For me that effort was based on having a common agenda. EATA served to provide the words to come out of our mouths.

I was told, in November 1990, six months before the authors first met, to organize and invite a workshop on “AIDS and Medication”. I spoke to ACT UP Berlin, and we set out to adapt the “AIDS Treatment Agenda (ATA)” for the US to our own purposes. The money was coming from the European Commission’s social arm – and the task was to promote the building of platforms. In all, maybe ten out of the 25 people attending the workshop understood, what it was formulating. A commonly heard remark was “can you spell this out for the protocol, please”. We had AIDS Service Organizations (NGOs), a hospice and a clinic, substitution treatments, women’s and gay men’s issues, children, nursing care, directories and a list of “alternative” treatments on our minds, too. We started with a brainstorming of issues unsolved. To me the account of research done in the UK and no access to the same compound to my best friends was the cracking point. “We are being told lies, when they say that there isn’t enough compound available to let people into trials earlier.”

We split up into three groups to draft positions based on the ATA around (1) trials, (2) drug regulation and (3) information. The trials group changed ATA in that in Europe we needed the basics for what had already been achieved in the US; few trials were multi-centred, entry criteria and approaches were irrationally diverse across Europe. There was much room for better designs, more compassion and collaboration in the entire field. A directory of clinical trials has meanwhile become available through concerted efforts started from this subgroup.

The second subgroup focused on the EU as the administration to reflect on what centralization and harmonization could serve to improve (beyond calling for more money). We dug into patients rights, duplication of efforts in regulatory processes, and identified examples of community representation in France and in the UK. This we added to the AGA from a European perspective.

The third group reported great progress in identifying the needs in information of patients’ communities. Collaboration agreements (sharing of articles and texts) and commitments to work together in bringing up new evidence were immediately sprouting out from the room and filling the communication during the breaks. They also provided room to catch up to explain to each other, what we were “in lay terms” talking about.

On the third day, we heard reports from the working groups and discussed the way forward. We called it “building a platform” – today you may call it the implementation phase of the EATA. We agreed on writing a finalized version. On publishing it at the 1991 International AIDS Conference in Florence. On publishing a newsletter to provide the information of our activities as well as news and basic medical education around clinical research in lay terms. On looking for funding to meet again. On setting up an organization independent of our current organizations framework restrictions.

The horrible business has become much less horrible since. Their have been catalytic and cataclysmic moments. Frameworks appear to shift and the “heureka” is more commonly heard. The ideas of EATA persist, even though the marks set have been passed in some places. It was surely a progressive approach at the time and it served to get us from “lab to bedside” for more people more rapidly. EATA became valuable in working with clinicians, industry, and authorities towards reaching the goal of participation.

In a less horrible business the patient is no longer an animal and there is (at last) awareness that the “animal” can do more than bark and wince.

I wish to dedicate this text to commemorate the following participants in the first “AIDS & Medication” workshop in Berlin, 1991, who have passed away: Andreas Salmen, Michael Fischer, Jürgen Poppinger. I wish to praise Robin Gorna, Hennig Mikkelsen, Jonathan Grimshaw, Peter Scott, Nick Partridge, Ulrich Marcus, Hans Hengelein and Stephan Dressler for their critical tole in writing EATA. The audio tapes of the workshop (thanks to Deutsche AIDS-Hilfe) are now archived in the “EATG Suitcase” at the Schwules Museum in Berlin. They have yet to be transcribed.

EATA was signed by the leading 20 community-based AIDS organizations in Europe in 1991. The first European newsletter was published to coincide with the second workshop arranged to also found EATG in February 1992.

 

25 June 2016

Matthias Wienold is a physician and master in public health. He is a member of EATG (Policy Working Group) and Treasurer of the International Alliance of Patients’ Organizations (IAPO).

Other Blogs by Matthias Wienold

Drug regulation

https://blogs.bmj.com/bmj/2016/05/05/matthias-wienold-drug-regulation-a-patients-view/

How an online patient group proved its value to me

http://blogs.bmj.com/bmj/2016/06/15/how-an-online-patient-group-proved-its-value-to-me/

 

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Aisuluu Bolotbaeva also attended the High Level Meeting on Ending AIDS http://www.eatg.org/blog/aisuluu-bolotbaeva-also-attended-the-high-level-meeting-on-ending-aids/ Sat, 18 Jun 2016 08:13:52 +0000 http://www.eatg.org/?post_type=blog&p=1063 13406768_10209559454444085_8165721248756406047_n

Well, the High Level Meeting on Ending AIDS was such a disappointment for many of us who expected that it would nail down the ‪#‎HumanRights‬ part of all Global Guidelines on HIV prevention among different groups by UNAIDS, UNODC, WHO, PEPFAR and UNAIDS.

Yet, there is a rainbow after or during each heavy rain, so this is exactly what it was the ‪#‎WhatWomenWant‬ campaign during the recent ‪#‎HLM2016AIDS‬ for me. Not only it gathered together so many strong, great women, but also highlighted that there can be no other way to end AIDS without stopping gender based violence, especially towards adolescent girls and young women. ‪#‎ProudToBePartOfIt‬!

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Bryan Teixeira reports from the High Level Meeting on Ending AIDS http://www.eatg.org/blog/bryan-teixeira-reports-from-the-high-level-meeting-on-ending-aids/ Sat, 18 Jun 2016 07:42:31 +0000 http://www.eatg.org/?post_type=blog&p=1061

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My takeaway from the HLM

 So, what did I learn at the UN High Level Meeting on AIDS?

Above all, I re-learned that human rights are fundamental or inalienable: they cannot be repealed or restrained by national laws or customs.

I re-learned that health is a human right.

Health for all – universal health coverage – has precedence over profits and intellectual property. In one of the final side meetings of the HLM, the issue of ‘balancing’ health and intellectual property rights was raised. Celso Amorim, a Brazilian diplomat, pointed out that it is not a matter of balancing: health has precedence. He referred to the DOHA Agreement as clarifying that. He emphasised that resolving the problems of access to health and medicines would not be reached via trade negotiations but ultimately via recourse to the UN Human Rights Council. Judit Ruis, MSF Access Manager, also echoed the idea that since the current systems of innovation were created by governments, it is governments that need to fix the broken elements of that system. And, yes, in prioritising access we must find a way to ensure that innovation continues to thrive for the good of future generations, as Andrew Witty, CEO of GSK, pointed out. The bottom line is, however, that unless we prioritise human rights over intellectual property we will not achieve our urgent 2020 targets and then definitely not our 2030 targets.

Health for all has precedence over cultural beliefs. This truth is clearly under attack at the UN: there are Member States that seem to believe that cultural beliefs can justify denial of access to health for all citizens. These States insist on using their cultural beliefs to justify not listening to and learning about the health needs of certain citizens, not developing targeted programs to meet those citizens who may be most vulnerable, not applying evidence-based interventions, not going beyond business as usual. The bottom line is, however, that unless these States revolutionise their ways in the next 5 years, taking seriously the health needs of all of their citizens and applying evidence-based science, there is no way that 2030 will mark the end of AIDS as a public health threat.

And, the last thing I re-learned was that funding the end of AIDS is still the elephant in the room! That is not to say that the broad financial targets have not been stated. We know what is needed, what international donors need to contribute, what needs to come from domestic sources, how much is needed to replenish the Global Fund, how much needs to be spent on civil society and community-based responses. What is not clear is how we will track these commitments, how we will ensure they are met, and especially how we will create an early enough warning system so that we don’t get behind any funding gaps in the narrow fast-track window to 2020.

Bryan Teixeira

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Welcome to the EATG blog space http://www.eatg.org/blog/blog-1-copy-6/ Fri, 30 Oct 2015 13:09:03 +0000 http://www.eatg.org/?post_type=blog&p=290 We shall use this space to report on whatever is happening at the EATG from the members’ perspective. There will be several members contributing each week – older and younger members, all of whom have been engaged in HIV related advocacy for several years.

The EATG has been involved in many different areas of treatment literacy and advocacy. We have also been engaged in a lot of work in other disease areas that are perhaps more remote from HIV and related illnesses. We will try to provide an informal but consistent picture of that immense landscape that is our members’ expertise and skills in this blog.

If you also would like to become an EATG member blogger, feel free to send a short note to me, Tamás Bereczky on communication@eatg.org.

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