Women and HIV
Updated: Nov 30, 2017
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 groups 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 in young ages, women in Eastern Europe are at a 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 specialist 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 under-represented 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 a 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 the 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 to 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 through 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 policy makers, amongst others to jointly and actively contribute to increase 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 co-ordinating 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 an 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.
Co-ordinator, EATG 4 Women
European AIDS Treatment Group
This interview will appear in issue three of Pan European Networks: Health, which will be published in November.