BHIVA releases new Standards of Care for PLHIV

Nursing Women living with HIV in Europe – HIV Nursing

Young People Living with HIV – about time to get their voices heard!

PrEP gives women a choice!

Should HIV research include pregnant and lactating women?

Ageing with HIV – 3rd Conference

EATG signs on the Women and PrEP consensus statement

Women and HIV

European HIV-Hepatitis Testing Week

Salamander Trust publishes a new report on barriers for women to access treatment

Pan European Networks: Health

Women Living with HIV in Sweden Meeting

Webinar: Results of the Metrodora research on the involvement of women in HIV clinical trials

Webinar: Introduction to medicines research and development

Positive Stories: Living and working in HIV in the UK

Positive Stories: Living and Working in HIV in Germany

Positive stories: Living and working in HIV in Romania

Positive stories: Living and Working in HIV in the Russian Federation

Women’s participation in HIV Research – recording now available

Metrodora Stakeholder Meeting – deadline extended until 2 April 2018

Metrodora Call for applications: Multistakeholders’ Meeting

What Women Want

EATG is recruiting a report writer for Metrodora Project

BHIVA releases new Standards of Care for PLHIV

The British HIV Association released earlier this week the new Standards of Care for PLHIV, a revision of the standards released in 2006 and 2013. The standards include and recognise women of all age span covering adolescents, menopause, sexual and reproductive health. Even though they can only be enforced in the UK, the standards can become a great tool for future advocacy work everywhere in Europe. The standards are being released in a time where the public health system (NHS) and the sexual health services are facing grave cuts and very restrictive budgets.

The new update includes the following sections:

1. Testing, Diagnosis, and Prevention
2. Person-centered care
3. HIV outpatient care and treatment
4. Complex HIV care
5. Sexual and Reproductive health
6. Psychological care
7. HIV across the life course
8. Developing and maintaining excellent care

Each one presents a rationale, quality statements, and measurable and auditable outcomes. Three new sections have been introduced looking at HIV prevention, stigma, and well-being, and HIV across the life course – young adults and adolescents, young to middle adulthood, older age, and palliative care.

BHIVA Standards Co-Chair, Ann Sullivan emphasises the contribution made by people living with HIV to the Standards: “Patients have had a key role in every stage of the development and production of these Standards: proposing the new areas to be covered; being actively involved in all writing groups; responding to the public consultation and recommending, volunteering for and organising the real representation seen in the Standards’ imagery. We hope that these Standards will deliver improved outcomes for people living with HIV in the areas that are important to them.”

BHIVA Chair, Chloe Orkin comments: “We hope that these new Standards will provide a framework to inform and support commissioning decisions both within and outside the NHS. In addition to targeting all healthcare professionals, they are also there to inform people living with HIV, and those who advocate for them, about the care they should expect to receive when they access HIV services.”

Nursing Women living with HIV in Europe – HIV Nursing

Nursing Women living with HIV in Europe can be challenging and definitely can vary from place to place. I have been lucky enough to live and work in two countries, Greece and England, and to meet women living with HIV from all over Europe. Read my article describing the experience in HIV Nursing http://www.hivnursing.net/

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Young People Living with HIV – about time to get their voices heard!

The Youth Activist and Advocates Scoping Project (YAASP) wants to understand the experiences and challenges of Young People Living with HIV (YPLHIV) who are involved in activism and leadership roles.

If you are 13 to 30 years old, they want to hear from you! They will use your opinions to put forward suggestions on how to improve opportunities for YPLHIV who want to be and are involved in advocacy and leadership.

The survey will take approximately 15minutes.https://goo.gl/forms/WM0rvixyaFDufEwi1

PrEP gives women a choice!

PrEP like contraception enables women all over the world (or wherever PrEP is available) to take control of their HIV risk. Nneka Nwokolo, an HIV consultant of Chelsea and Westminister NHS Foundation Trust, explains in a very comprehensive and inspirational video how PrEP empowers women and provides them with choices around their sexual behaviours and risks.

You can see the video below:

Should HIV research include pregnant and lactating women?

As we are fast approaching the launch of EATG’s Metrodora project that aims to look into the participation of women in clinical research our friends in TAG (Treatment Action Group) are conducting two webinars on the inclusion of pregnant and lactating women in clinical research. You can find the recording of the first webinar and the form to register for the second here: http://www.treatmentactiongroup.org/content/webinar-including-pregnant-and-lactating-women-clinical-research

Ageing with HIV – 3rd Conference

Ageing with HIV, the 3rd phase of the project looking into the age group 18-50, is now accepting applications for people who want to attend the 3rd conference!!!!

Visit the site (see link below) to apply!!! Deadline for applications: 12 February 2018, 23:55 CET

https://www.ageingwithhiv.com/

EATG signs on the Women and PrEP consensus statement

Women and HIV

The European AIDS Treatment Group’s Christina Antoniadi explains why it’s important to promote the meaningful and sustainable involvement of women in HIV research and development.

Women made up 51% of all adults living with HIV in 2015. Gender-based violence, exposure to sex work, economic inequality, and a lack of access to information and treatment make women and girls particularly vulnerable to the virus, with trans women, young women, and adolescent girls, especially at risk. Despite this, women have historically been under-represented in clinical trials, and gender-specific data to help guide the care and treatment of women and girls living with or exposed to HIV is largely missing.

EATG 4 Women is a dedicated branch of the European AIDS Treatment Group committed to promoting the meaningful and sustainable involvement of women in HIV research and development. To this end, the group works to raise awareness of the unmet clinical and psychosocial needs of women and girls living with HIV and to influence policymaking to ensure that all aspects of the HIV/AIDS agenda include a gender perspective.

Here, EATG 4 Women’s co-ordinator, Christina Antoniadi, outlines the unique challenges facing women and girls living with or affected by HIV in Europe, and shares how the group’s recently launched Metrodora project will work to empower them.

How far does the HIV/AIDS agenda in Europe incorporate women’s and girls’ unique vulnerabilities to HIV/AIDS?

This is a huge subject and we could discuss it for hours. In short, Europe seems to be divided in its response. There are great differences between Eastern, Central, and Western Europe but also amongst the member states of the European Union: differences in funding streams for services, differences in the characteristics of the epidemic, differences in prevalence that inevitably make the response a national issue, and differences in involvement. Furthermore, even though the statistics show that MSM (men who have sex with men) are still leading the epidemic, they unfortunately also show that at young ages, women in Eastern Europe are at similar risk to their male counterparts. Recent data in the UK highlight that almost half of women who are living with HIV have experienced intimate partner violence. Also, sexual health education and services are very problematic in many European regions, and sometimes this interferes with prevention strategies and options.

Finally, hard-to-reach populations such as trans people, prisoners, and injecting drug users are often left out of the HIV response (planning, design, and implementation of services). Women that are part of those hard-to-reach populations are even more difficult to consider as their numbers are relatively small, as well.

What can be done to meaningfully involve more women living with and affected by HIV/AIDS in all aspects of the HIV/AIDS response?

In our opinion, it all has to start with education. We need to scale up sexual health and rights education in schools, sexual health clinics, or, ideally, community-run spaces where women are supported to feel more comfortable in discussing contraception and STI prevention, pregnancy, and getting older with HIV. We need to create spaces where they can be trained to identify their own risk and take relevant measures to protect themselves, whether that is frequent screening and testing (including self-testing), access to PrEP (pre-exposure prophylaxis), or access to treatment and specialists as well as peer support services. Moreover, we need to educate women specifically on HIV science and to empower them to engage in the design of the services addressing them in order to fit their needs. We also need to engage them in research and development – either on the science level or as patient representatives. This would allow them to influence the design of a clinical trial in ways that not only increase recruitment in the study but can also influence retention and adherence throughout the clinical trial.

Women need to be engaged in political decision areas of the HIV/AIDS response. Women from key and affected populations are less involved in the design, planning, implementation and monitoring processes of HIV prevention and treatment programmes. Accordingly, the importance of women’s role in the HIV epidemic is somewhat neglected and their needs remain unmet.

Women and girls have historically been underrepresented in HIV/AIDS research and development – why is this? What effect does it have on their experience of HIV/AIDS, and how can their participation be better encouraged?

It all has to do with the numbers, the stigma, and access to clinical research and trials. Traditionally, in Western Europe and the US, many studies were carried out within MSM populations. Moreover, it has always been easier for men to enter clinical trials than women, especially those of reproductive age, who have often been excluded, especially when new agents are being tested. That has led to very limited data on the effect of certain medications in women. Taking into consideration that this includes possible biological differences, hormonal differences, hormonal therapies (for both cis and trans women), it is a wonder that scientists and pharmaceutical companies have not pushed for greater inclusion of women in clinical trials in the first place.

To encourage the participation of women, first of all, the trial design should allow and enable their participation. We have seen a great difference when protocols are developed by women principal investigators (PIs) and when patient/community representatives have the opportunity to review those protocols. More women need to be trained to review protocols. Trials need to enable women in their several roles (as professionals, mothers, wives, or carers) to participate and attend. Simple things, practical solutions and provisions could enable women to participate. For example, the availability of childcare makes it easier for women to attend clinic appointments, which might be more often during a clinical trial. But patient leaflets on trials and informed consent do not always ensure that women who participate in clinical trials have the support they need to adhere and stay in the clinical trials. I feel peer support could help a lot in that respect.

The World Health Organization hails the reduction in mother-to-child transmission of HIV as ‘one of Europe’s successes in its fight against HIV/AIDS’. Would you agree? Can any lessons learned here be applied to other aspects of the HIV/AIDS response?

The elimination of perinatal transmission is of course of high importance, but only Cuba, Thailand, Belarus and Armenia have succeeded at it. We still have a long way to go to reach the Start Free, Stay Free, AIDS-Free UNAIDS Super-Fast-Track targets. Indeed, these countries provide good practices and examples that should be adopted and, indeed, in recent years a lot of countries have introduced better testing and increased access to treatment for pregnant women in Europe, but that is not true for all of Europe or for women in hard-to-reach populations. Civil society has been asking for a long time for the normalisation of HIV testing and the inclusion of non-medical personnel as we believe it will increase diagnoses in almost all settings and populations.

We cannot talk about eliminating mother-to-child transmission if antiretroviral (ARV) drugs are not available to all, as is the case in some Eastern European countries. We also cannot talk about eliminating mother-to-child transmission if there is no access to services that will educate, provide HIV screening tests, and support a woman throughout her pregnancy and the first year of her baby’s life. We cannot talk about eliminating mother-to-child transmission when PrEP is not available in all countries and settings. For some women, for example, especially if they have seroconverted after they have already had children, breastfeeding prohibition is devastating, especially in resource-limited settings. In my opinion, there is a need for support services and peer groups or one-to-one support for all women living with HIV when they get pregnant and for at least one year after that.

HIV prevalence is generally low across Western and Central Europe, but in Eastern Europe the HIV epidemic continues to rise rapidly – what more must be done to specifically protect women and girls in this region?

As mentioned before, Eastern Europe is very much behind in the HIV response. In 2015, there were an estimated 1.5 million people living with HIV in Eastern Europe and Central Asia. It is the only region in the world where the HIV epidemic continues to rise rapidly, with a 57% increase annually in new HIV infections between 2010 and 2015. The vast majority (85%) of people living with HIV in the region live in Russia and Ukraine. Russia also accounts for eight out of ten new HIV infections and reported in excess of 85,200 new diagnoses in 2014 alone.

The epidemic is concentrated predominantly among key affected populations – in particular, people who inject drugs – yet there is low coverage of harm reduction and other HIV prevention programmes in key countries within the region (Russia, Turkmenistan). Finally, ARV treatment coverage remains inadequate at 21%, which is significantly lower than the global average. Many people are tested late and do not receive the treatment they need.

Women in Eastern Europe and Central Asia are especially at risk of HIV due to multiple factors such as economic vulnerabilities, fearing or experiencing violence, and difficulties in negotiating for safe sex. In extreme cases, women combine all vulnerabilities associated with drug use, sex work, social marginalisation, and stigma and discrimination, which prevents them from accessing HIV services.

Civil society has been advocating for many years for access to medication and services, access to testing and prevention, access to harm reduction services, and the removal of systemic and other barriers such as criminalisation laws, healthcare stigma, and forced testing. This is truly making an impact in many countries. Nevertheless, with the Global Fund to Fight AIDS, Tuberculosis and Malaria moving out of a lot of those areas and the funding of services being moved to national budgets, we are seeing a lot of services struggling and closing down. Central European countries have already had similar experiences after the Global Fund withdrawal when governments had to take financial responsibility for the HIV programmes. That led to a focus on securing treatment for people living with HIV, with devastating results for prevention programmes. It is very sad and dangerous at the same time to see paradigms that work being shut down due to a lack of funding.

On top of that, the UNAIDS 90-90-90 goals are leaving 10% behind. A large proportion of that 10% includes women in Eastern Europe. The aim should be to address all factors of vulnerability and the barriers to free testing, prevention and treatment services that exist in this region. In particular, educational and prevention programmes should be developed and broadened, and ideally, these should be planned and executed by women affected

by HIV. It is a shame in the era of U=U (Undetectable=Untransmittable) to keep negotiating the evidence science has provided us with.

How will the Metrodora project work empower women and girls living with or affected by HIV/AIDS in Europe, and how does this tie into the wider work EATG is doing in this area?

Metrodora intends to investigate specifically the involvement of all women in the research and development field. We expect this project to foster women’s involvement in HIV R&D and their active participation in decision-making processes. Our objective is to empower women living or affected by HIV and to enhance collaborative efforts between key stakeholders (researchers, pharmaceutical industry, regulators, and policymakers, amongst others to jointly and actively contribute to increasing the representation of women in HIV R&D processes.

EATG has been advocating for the rights of people living with HIV, including women, for the last 25 years and as part of its work provides training to its members in more than 40 European countries. EATG members have been, through the European Community Advisory Board, a very important stakeholder in influencing pharmaceutical companies and industry to improve inclusion in clinical trials by reviewing protocols. We have also been advocating and pushing for access to medication, services and prevention through our position in the HIV/AIDS Civil Society Forum and representation in other international organisations.

When it comes to women, EATG has a dedicated portfolio called EATG 4 Women, which I am coordinating with the help and support of the advisory committee, including Rebekah Webb, Sanja Belak Skugov, Julia Dragunova, Lucia Trasca, Marine Gogia, Mariana Vicente, Ian Hodgson, Deniz Vyanik, Damian Kelly and Giulio Maria Corbelli and Mark Josef Rappa – Metrodora project researcher. Our mission is: to give voice to, empower and support cis and trans women living with or affected by HIV, of all ages (adolescents, young, menopausal, post-menopausal) and within all their capacities (academics, activists, sex workers, injecting drug users, mothers, single, married, carers, etc.), prioritising EATG members, to become actively involved in the HIV response (prevention, treatment, research, access, retention to care, cure, co-infections) in Europe (West, East, Central). We aim to provide a holistic approach for women by combining the main elements in all EATG work: science, policy and training.

There is definitely a lot to achieve in the following months and years; on the other hand, we are just beginning.

Christina Antoniadi

Co-ordinator, EATG 4 Women

European AIDS Treatment Group

www.eatg.org

This interview will appear in issue three of Pan European Networks: Health, which will be published in November.

European HIV-Hepatitis Testing Week

European HIV-Hepatitis Testing Week 2017

Now in its fifth year and the third time hepatitis testing has been included, European HIV-Hepatitis Testing Week will take place from 17-24 November 2017.

Testing week 2016 spanned the length and breadth of the continent with partners participating from over 50 European countries. Check out the live feed to see the organisations that have already signed-up to implement testing week activities in their country.

Click here to view the full list of people who signed-up for testing week 2017.

Salamander Trust publishes a new report on barriers for women to access treatment

Click here to read the report

Pan European Networks: Health

Pan European Networks: Health brings together a variety of voices in the healthcare arena to highlight the latest trends and most cutting-edge developments in European health and healthcare research and policy.

Read Health Issue 03 now.

Women Living with HIV in Sweden Meeting

Women Living with HIV in Sweden Meeting

On September 12, 2018, EATG member Jackie Morton represented the European AIDS Treatment Group in the Knowledge Network for women living with HIV in Sweden meeting, hosted by Posithiva Gruppen. Jackie presented the Metrodora project, providing insight into clinical trials for women. The group was particularly keen to hear where they, as activists, can get involved with clinical trials but also how they can influence the financiers and health systems, to provide medications that meet their needs rather than just having to take what is on offer.

#PosithivaGruppen, #EATG, #Metrodora

Webinar: Results of the Metrodora research on the involvement of women in HIV clinical trials

The third webinar presenting the findings of the Metrodora research took place on 2nd May 2018.

In this webinar, Mark Josef Rapa presented the results of his research on the participation of women in HIV clinical trials that he has conducted within the context of the METRODORA project of EATG.

Mark Josef Rapa is a lawyer from Malta with an LLM in Health Care

Ethics and Law from the University of Manchester. His main interests

revolve around the intricate relationship between law and ethics in

healthcare; selection of embryos, infectious diseases, and clinical

trials, in particular. In his own right, he has written two dissertations,

the first, ‘The criminal law on HIV transmission (2015)’, covering the

laws of Malta, the UK, Italy, and Canada, and the second, more

recently, ‘Is there a moral obligation to create the best possible child?’ (2017) focusing on

the law in England and Wales which prohibits the implantation of ‘disabled’ embryos when

others are available. As a STEP-UP graduate and member of the Policy group within EATG,

Mark has kept himself updated about the legal developments and barriers which citizens

living with HIV have to face on a daily basis in their respective countries. Within the context of

the EATG project METRODORA, Mark has conducted research on the participation of

women in HIV clinical trials.

A.14 Webinar: Introduction to medicines research and development

EATG will host a webinar, Introduction to medical research and development, on Thursday, 26 April 2018, 18:00 – 19:00 CEST (Brussels, Berlin, Paris time).

The webinar is organized within the context of the Metrodora Project https://www.eath4women.com/metrodora

The webinar will be led by Tamás Bereczky and Giulio Maria Corbelli. You can find more information about the speakers here: speaker bios.

The webinar will cover the following topics:

Process and stages of medicine development from molecule to registered drug and different phases and types of clinical trials  – Tamás Bereczky

Role of community in the various stages of the medicine development process – Giulio Maria Corbelli

How to register:

Please register as soon as possible by filling in an online form here: https://www.surveymonkey.de/r/M5HQ9ZV

The deadline for registration is Wednesday, 25 April 2018, 23:59 CEST.

You will receive a confirmation email with instructions for registration with the webinar online system and access details shortly after the closing date to register.

For further information regarding the webinar or registration please contact Kristjan Jachnowitsch at Kristjan.jachnowitsch@eatg.org

Positive Stories: Living and working in HIV in the UK

Sue lives in England. Her diagnosis has motivated her to become involved in the field of HIV. She is fighting stigma every day through her activities mobilizing her professional knowledge and passion.

Name: Sue

Country of residence: England

Country of origin: England

Profession: Senior Manager NHS, Registered Nurse

What is your involvement in the HIV field?

Advocate at a political level, targeting politicians, designing national standards in the UK and in Europe on human rights issues and HIV.

How has HIV influenced and/or shaped your everyday life and habits?

I have two lives, the HIV world, and my home life, and both are totally separate.

Like most people, when diagnosed I was numb from head to toe. I didn’t believe the consultant that medication would give me a full lifespan. I had seen the 1980s tombstones that stated this deadly disease could kill you and there was no cure. When diagnosed, I struggled with being told that I would have to take medication for the rest of my life. I had a phobia about taking any tablets having suffered anaphylactic shock twice, once at the age of 18 after a dose of penicillin and in my 30s after taking an Asprin. Taking ART for the first time was so scary. Ten months later, I felt so depressed that one day in 2010, I thought about committing suicide, to throw myself off a nearby bridge. It was a reaction from Efavirenz. I changed to monotherapy and since that day have never looked back.

HIV changed my life completely. I took early retirement from a 40-year career in the NHS and launched into finding out more about the virus. Like many people of my age, I am 64 years old, HIV did not exist when I was a teenager so I knew very little about it. As a passionate woman, it has driven me to fight for those less able having presented in parliament in England, Scotland and Europe on the needs of people living with HIV and other co-morbidities. My challenge is to make our policymakers understand how people are stigmatised and discriminated against in this modern age where ignorance still exists. I have written articles, had papers published, and sat on national committees to ensure the voice of people living with HIV is told.

Yet, I cannot tell the world about my own condition as my children still do not know I live with this virus every day. Why you may ask? It is quite simply because HIV does not just affect you as an individual. In my case, my husband’s infidelity resulted in both of us being infected with HIV and he lives in fear of losing our children if his bi-sexuality is out in the open. Since diagnosis 9 years ago, I have hidden this dark secret when at home, yet am so open in the HIV world, where I feel safe and welcomed. My life is rich and full since being diagnosed with HIV.

What are the key priorities in your opinion presently in the HIV field?

1. HIV needs to be normalised and that means to see as an equal among other long-term conditions and this means the continuation of funding to inform society of its changing face. I desire a world where people do not have to hide their diagnosis for fear of what will happen to them or their loved ones if it is known.
2. Promotion of modern treatment & prevention methods to be available to all; PrEP, PEP alongside longstanding existing prevention and treatment methods.
3. Stamp out punitive laws and practices based on ignorance. Punishing people because of same-sex relationships fail to adequately address their needs and will continue to hide those who live with HIV, either knowingly or not.
4. Raise the needs of women, who are often forgotten as priorities, as most targets are for key affected populations.
5. Reduce medication costs to make it available to all.

Are you involved in women’s projects at the moment?

Yes, I have been involved right from its inception as an idea and will continue to be involved throughout its lifespan.

How does U=U translate for a woman living with HIV?

The Undetectable = Untransmittable campaign offers the opportunity to eliminate the stigma that surrounds HIV. Women telling their stories still highlight the ignorance that still surrounds HIV; in health settings, workplaces, society at large and across country leaders. HIV stigma is a huge barrier to ending the HIV epidemic and the U=U campaign offers the opportunity to normalise HIV and end both internalised or perceived and actual stigma.

What is your view about disclosing ones status in the era of U=U?

As mentioned, disclosure is more than being open about your status with HIV, it can include long-hidden issues on your personal sexuality. Discovering my husband’s bisexuality saw him spiral into what he describes as a ‘dark place’, resulting in taking an overdose and he almost died. This came before we found out about his diagnosis of HIV and was harder to accept than receiving a positive result. It is what prevents my own disclosure and he lives in fear of his bisexuality being known.

What is in your opinion the biggest misconception about a woman living with HIV?

That you cannot get pregnant and have a baby living with HIV when clearly you can.

That women are the same as men and therefore clinical trials do not need to recruit women, which we know there are obvious biological differences and many clinical differences.

In your experience what works best when it comes to supporting women living with HIV?

Peer support from other infected women really helps newly diagnosed women and can guide them through the maze of information that the person needs to know in the management of their own condition.

Positive stories and speaking out also is invaluable for those able to disclose their status. The more women that can speak out, the more it helps to spread information on HIV today, which is very different to the early days of the disease.

What do you think is the most important message presently for women living with HIV in Europe?

Contact a local support group who can help you with your diagnosis and support you to reach your own potential of living with HIV, even if you live in an isolated or rural community.

Do you have any message, advise or wish for the women living with HIV in Europe?

Sharing stories and first-hand experiences of living with HIV is a vital tool to tackle stigma. Please share yours.

Positive Stories: Living and Working in HIV in Germany

Harriet has been involved in the HIV field since 1992. Her interest in Sexual Health has allowed her to work in projects for women and gain a very good insight on what living with HIV means for a woman.

Name: Harriet

Country of residence: Germany

Country of origin: Germany

Profession: Journalist (free lance with a special interest in sexual health)

What is your involvement in the HIV field?

I’m in advocacy for women and HIV/AIDS since 1992: co-founder of Germany’ national Network for Women and AIDS; Chief editor of DHIVA – Germany’s special interest magazine for women on sexuality, health and HIV; hosting women centred projects (as e.g. the Network, the DHIVA; the SHE Programme, The Sexworkers’ Project Voice4Sexworkers (V4S), Lifeboat Germany) at the foundation GSSG – Charitable Foundation Sexuality and Health

How has HIV influenced and / or shaped your everyday life and habits?

In too many ways as I can explain here: professionally, I started as managing director/CEO of Germany’s National AIDS Foundation in the 1990ies; as a researcher in sexology and as a volunteer and advocate in HIV prevention for women I am actually filling my days; there is little in my life that is NOT related to my professional, researcher’s or volunteer’s life…

What are the key priorities in your opinion presently in the HIV field?

– empowering women to live with HIV and without stigma; to get the best therapy available and to be seen and heard by research and science – better even to become involved

– empowering women to protect themselves from acquiring HIV: having the choice to decide about their best prevention (from condoms to PrEP and much more)

– avoiding creating new categories among PLWH: good PLWH who are Undetectable – bad PWLH who are not. Discrimination and stigma should not be linked to my viral load

– avoiding (too) late presenting: many women do not get their diagnosis in time as doctor still thinks in “risk groups” instead of risk behaviour or indicator symptoms

Are you involved in women’s projects at the moment?

Yes, many, see above

How does U=U translate for a woman living with HIV?

See above. It can be an enormous relief for the individual, but it should not be a part of public prevention campaigns as it again puts the burdens of being responsible to PLWH – and allows stigmatizing those who “are detectable”

What is your view about disclosing one’s status in the era of U=U?

As with any other health status: it is a very personal question and decision – and for women who raise children even more as long as there is stigma and fear related to a disclosure; however, on a broader scale, we need role models who are “out” – regardless their U

What is in your opinion the biggest misconception about a woman living with HIV? –

“they can’t have sex”; “they can’t have babies”, “they must have behaved morally dubious”

In your experience what works best when it comes to supporting women living with HIV?

Listening to them! Women are a diverse group with diverse profiles. Offering peer to peer /self-help programs; low threshold and tailor-made programs (e.g. fitting to their schedules, allowing/offering child care, etc.) supporting women with their daily needs

What do you think is the most important message presently for women living with HIV in Europe?

You are not alone; HIV is not the end – you can make it a life changer if you want to

Do you have any message, advise or wish for the women living with HIV in Europe?

Join! Meet other women and get involved – and if there is no specific/local group for you yet: start one!

Positive stories: Living and working in HIV in Romania

Ana is a young woman living with HIV in Romania. She became involved in the HIV field after her diagnosis, which happened in very young age. Today she describes her journey into knowledge and empowerment.

Name: Ana

Country of residence: Romania

Country of origin: Romania

Profession: community health worker

What is your involvement in the HIV field? Counseling, prevention, testing, adherence support for PLWH, referral and screening

How has HIV influenced and / or shaped your everyday life and habits?

An HIV diagnosis can turn your life upside down and it also happened with my life…in 2007 I felt that my life ended but in 2018 I really feel that I am more powerful that I have ever been.

I am looking towards the future with optimism and I appreciate every day and every breath I take.

Even though it may sound strange, HIV made me a better person, a person that loves others no matter their race, sexual orientation, age, disabilities or cultural background; a person that finally found her purpose in life – to help others in need – like she needed when she was younger.

It made me more educated and more organized.

What are the key priorities in your opinion presently in the HIV field?

When it comes to priorities in the HIV field, I will always talk about prevention, adherence to treatment and reducing discrimination and stigma.

Are you involved in women’s projects at the moment?

Yes, I am participating in international projects such as Metrodora as much as I can and I am also counseling other women living with HIV on a national level.

How does U=U translate for a woman living with HIV?

U=U is a very important message not only for women living with HIV but for all the people living with HIV. We, as activists, should promote the U=U campaign and its important message, especially when we struggle to overcome the prejudice and discrimination against people living with HIV.

What is your view about disclosing one’s status in the era of U=U?

My HIV status is an “open secret”, restricted in knowledge but widely known in the HIV field.

In Romania, U=U remains something that most people don’t want to accept or believe because for all these years HIV was presented a death sentence, a plague.

However, it’s easier to disclose to those that want to accept all the latest studies and facts about HIV and what undetectable means.

What is in your opinion the biggest misconception about a woman living with HIV?

If you are a woman with HIV most commonly you will be associated with women in sex work.

In your experience what works best when it comes to supporting women living with HIV?

Share resources and information with them and personal stories.

What do you think is the most important message presently for women living with HIV in Europe?

While maintaining ART you can live a long and healthy life and you can have healthy babies. (Only if you wish to have children, of course)

Do you have any messages, advice, or wish for the women living with HIV in Europe?

Plan your future. Like Abe Lincoln said “it’s not the years in your life that count. It’s the life in your years.”

Positive stories: Living and Working in HIV in the Russian Federation

JD is a young woman, living and working as a social advocate in the Russian Federation. She became involved in the field of HIV after her own diagnosis. In her interview she highlights what living with HIV means for her and the strength it has filled her with.

Name: JD

Country of residence: Russian Federation

Country of origin: Russian Federation

Profession: social advocacy

What is your involvement in the HIV field? Advocacy, counselling, coordinating educational projects of PLWH.

How has HIV influenced and / or shaped your everyday life and habits?

– It made me calm & wiser

– It helped me to become tolerant and more open-minded towards people

– it gave me close friends

– it gave me the job of my dream where I can help people & really do some difference in others life

– it gave me a profession where I grow, learn, and respect myself for what I am doing

– it made me more attentive and responsible towards myself and my own health & life

Living almost half of my life (18 years) with HIV gave me a very natural feeling about it, I got used to be HIV positive. Most positive events & changes in my life are related to this period.

What are the key priorities in your opinion presently in the HIV field?

– Access to treatment for all who needs it

– Reducing stigma

– Prevention

Are you involved in women’s projects at the moment?

– volunteering to help women IDU in recovery and social adaptation, most of them live with HIV/HCV. Peer-to-peer counseling

How does U=U translate for a woman living with HIV?

– Undetectable = Untransmittable – an important message that can in theory help to improve stigma issues

What is your view about disclosing one’s status in the era of U=U?

– For our region is it still an issue, that is hard to achieve

What is in your opinion the biggest misconception about a woman living with HIV?

– Public stigmatisation that affects the majority of women living with HIV

In your experience what works best when it comes to supporting women living with HIV?

– Medical proved facts about HIV

– Personal successful experience about living with HIV

– Ability to comprehend and to feel unity with her without pity

What do you think is the most important message presently for women living with HIV in Europe?

– If you are taking treatment you can live the same life as people without HIV

Do you have any message, advise or wish for the women living with HIV in Europe?

– A wish – to give a chance for the new opportunities for yourself, HIV can be a start, not the end

If you would like to contact us with regards to this interview please use the following email address: eatg4women@eatg.org

Women’s participation in HIV Research – recording now available

On Wednesday, 04 April 2018, 17:00 – 18:00 CET (Brussels, Berlin, Paris time) EATG organized the first of a series of webinars about the Women’s participation in HIV research . The webinar was organized within the context of the Metrodora Project which falls under the EATG4Women portfolio.

The webinar was led by Shema Tariq who is a Postdoctoral Clinical Research Fellow at UCL’s Centre for Sexual Health & HIV Research and Honorary Consultant at Mortimer Market Centre.  Her main area of interest is the reproductive and post-reproductive health of women living with HIV.   Shema is currently Chief Investigator of the PRIME Study, an NIHR-funded study investigating the impact of menopause on HIV-positive women’s health and wellbeing.  She has a particular interest in improving the representation of women in HIV research.  She is currently involved in a study examining women’s participation in HIV trials, and regularly works with and mentors peer researchers.

This webinar covered the following aspects:

Overview of women and HIV

Why should we care about including women in HIV research?

Overview of women’s representation in HIV research

Barriers to women’s participation in HIV research

Ways to address women’s representation in HIV research

Watch the webinar below:

Metrodora Stakeholder Meeting – deadline extended until 2 April 2018

Metrodora is a project run by EATG under the EATG4Women portfolio that aims to enhance the Meaningful Engagement of Women in HIV Treatment Research. The meeting will be conducted in 2 parts: on Tuesday 15 May 2018 half a day training will take place and on

Wednesday 16 May 2018 a stakeholders meeting will follow. The meeting will take place in Park Inn Hotel, Brussels, Belgium.

This call for applications is addressed to women and men living with or affected by HIV from all over Europe who wish to promote increased involvement of women in HIV R&D. There will be three components of participation for the successful applicants: participation in webinars, a face to face training and attendance in a Multi-stakeholders’ meeting where the meaningful involvement of women in R&D will be discussed.

Please note: previous experience in clinical research is not a prerequisite to apply! The call is open to women and men living with or affected by HIV, nevertheless women living with HIV and an interest in clinical research are highly encouraged to apply!

To apply:

Please note that previous experience in clinical research is NOT a prerequisite for participation. Please send:

1) your motivation letter in English, including answers to the following questions: How many clinical research protocols have you reviewed in the last three years?; Have you ever participated in a clinical trial yourself?; Have you ever participated in drafting a patient information sheet for a clinical trial? and

2) a brief CV in English (including evidence of experience in HIV advocacy) to Kristjan Jachnowitsch, EATG Training Coordinator, (Kristjan.Jachnowitsch@eatg.org) by Monday 2 April 2018.

For more information about the project, you can also contact Maria Dutarte, Project Manager (maria.dutarte@eatg.org).

You can also read more here:

The METRODORA Project:

The aim of the Metrodora project (https://www.eatg4women.com/metrodora) is to foster women’s involvement in Research and Development in the HIV field and their active participation in decision-making processes. The project foresees three levels of activities: assessing the involvement of women in Eastern and Western European regions; empowering advocates, and enhancing collaborative efforts between key stakeholders to improve the involvement of women in HIV R&D. The project is led by the European AIDS Treatment Group (EATG) and is part of their EATG4WOMEN initiative. For more information, see https://www.eatg4women.com/metrodora.

Metrodora Call for applications: Multistakeholders’ Meeting

Today, on International Women’s Day, we are very pleased to launch the call for the second phase of the project Metrodora.

Please find attached the call for Metrodora participants for the Multistakeholders’ Meeting.

Please note: previous experience in clinical research is not a prerequisite to apply! the call is open to women and men living with or affected by HIV, nevertheless women living with HIV and an interest in clinical research are highly encouraged to apply!

We would appreciate it greatly if you could share it with your networks.

Happy International Women’s day!

What Women Want

Somewhere between Freud and Mel Gibson, one would think that 100 years after the suffragette movement we would have an answer.

Well, Athena Network is delighted to launch ‘#WhatWomenWant: A toolkit for putting accountability into action’.

The toolkit provides a framework for accountability in action, to put women and girls in all of their diversity at the center and to bring a feminist, gender transformative lens across policy development, program implementation, research, strategies, and initiatives.

Find it here: http://athenanetwork.org/assets/files/WhatWomenWant/Athena-WWW%20toolkit%20for%20putting%20accountability%20into%20action.pdf

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EATG is recruiting a report writer for Metrodora Project

Please see attached a call for a consultant for the writing of Multi-Stakeholders’ Meeting Report and Joint Action Plan for the Metrodora Project.

Background:

The aim of the Metrodora project is to foster women’s involvement in HIV Research and Development (R&D) and their active participation in decision-making processes. The project foresees three levels of activities: assessing the involvement of women in HIV R&D in Eastern and Western European regions; empowering advocates and enhancing collaborative efforts between key stakeholders to improve the involvement of women in HIV R&D. By the end of the project, it is expected that key stakeholders involved in women HIV treatment and prevention research are jointly and actively contributing to increasing women representation in HIV R&D processes.

Multi-Stakeholders’ Meeting:

Key stakeholders involved in women’s HIV treatment and prevention research (community, researchers, policymakers, international organisations, and pharmaceutical companies) will be invited to this meeting to discuss the key barriers and gaps in the field as well as a Joint Action Plan contributing to increase women’s representation in HIV R&D processes.

Tasks:

The Consultant will be in charge of writing a report of the Multi-Stakeholder Meeting (16 May 2018, Brussels, Belgium) and the Joint Action Plan for the Metrodora Project. Please see the detailed description of the tasks and remuneration in the attached document.

Applications:

Please send your motivational email/letter and CV in English to Maria Dutarte (projects@eatg.org) by Monday 26 March 2018.

For questions, please contact projects@eatg.org.

As part of the Ageing with HIV Project, the European AIDS Treatment Group (EATG) is organizing a conference on the topic “New Challenges and Unmet Needs of people Living and Ageing with HIV/AIDS Aged 18-50 – Quality of Life and Preventive Healthcare”. The conference will take place from 3 to 6 May 2018 in Kyiv – Ukraine. The working language of the conference is English.

By bringing together the patients’ community, researchers, healthcare providers, and other key actors working in the domain of ageing and HIV it is expected that the conference will provide an overview of the latest research on the medical, psychological, and social aspects of living and ageing with HIV/AIDS and the identification of key advocacy needs and priorities in this domain. This 3rd and final conference of the Ageing Project will focus on the quality of life, health outcomes, and preventive healthcare targeting People Living with HIV aged 18 to 55 years old from different key affected groups.

More information about the conference including the provisional agenda can be found on the (EATG) Ageing with HIV Website at http://www.ageingwithhiv.org/

The deadline for submitting your application is 12 February 2018, 23:59 Central European Time.