The World YWCA has been a member of the Conference Coordinating Committee (CCC) of the International AIDS Conferences since 2008. Last November, representing the YWCA, I took part in an extraordinarily moving and powerful meeting in Vienna, in preparation for this week's International AIDS Conference.
The meeting was hosted by AIDSHilfe Vienna and was organised by several European and international organisations. The purpose of the meeting was to understand more deeply the challenges that women with HIV face in Europe and to advocate that these challenges be included in the conference programme. As women we wanted to strategise a response that would grow beyond Vienna.
Twenty nine women attended from countries across Europe and Central Asia. Women from Austria set the scene, describing how there are around 12,000 – 15,000 people living with HIV in Austria, and half of these live in Vienna. But sadly there are no figures on women living with HIV in Vienna. The woman who delivered this presentation, Wiltrut Stefanek, has been living with HIV for 14 years and is the only positive woman who is open about her HIV status in Vienna. She shared how people experience stigma and discrimination especially in the medical services. A discrimination report published in 2008 showed that all people living with HIV, especially women, need to be careful who they disclose their HIV status to. This makes working with positive women on advocacy challenging. Women will attend support groups but will not disclose their HIV status. It is stigma and discrimination that drives the epidemic in European countries, especially towards women who use drugs. Stigma and discrimination further drive people underground and this affects their freedom to know their status, or take steps to access support, services and programmes.
Women at this meeting highlighted some of the challenges that they face on a daily basis across Europe. Europe is a diverse region and the differences in the AIDS response between European Union countries and non-EU countries differ greatly in terms of modes of transmission, the health care, available medications and resources. European women are affected by the perception that Europe is rich and that it is only people in the global South who need support, especially around HIV. The old stereotypes about HIV “just” affecting gay men in Europe die hard. It is often difficult to keep women on the AIDS agenda as a priority.
A number of countries have expanded access to antiretroviral therapy, although average treatment coverage across the region remains quite low. By December 2008, 23% of adults in need of treatment were receiving it—only just over half of the global average of 42%.
Due to the life-prolonging effects of antiretroviral therapy, “relatively few “people (32,000) died of AIDS in 2007 in W Europe and N America. Yet women at this meeting spoke about the major challenge in Europe of access to medication, especially in non-EU countries. The psychosocial issues that surround HIV are not addressed as it is assumed by health care systems that because people are living longer (due to access to ARVs) that they do not need to address the mental and emotional challenges that people with HIV often face.
Women in Europe mainly acquire HIV by heterosexual contact and through drug use. Injecting drug use was the source of 57% of new HIV diagnoses in Eastern Europe in 2007. An estimated 3.7 million people currently inject drugs in the region, and roughly one in four are living with HIV. People who use drugs are seriously discriminated against and there is often a double stigma for those who have both HIV and Hepatitis C. A further challenge is for pregnant women who use drugs who are sometimes refused treatment and services because they use drugs.
Women from the UK who work with women in prisons also highlighted how women – both with HIV and without - intentionally get arrested so that they can access services as well as take a drug holiday and detoxify for a few weeks. It was clear that women are most vulnerable when they leave the prison as they go straight back to their old way of life with no access to support.
Women at this meeting spoke of how they are often discouraged from having children. Service providers are clearly not talking to each other and keeping abreast of the latest information on vertical transmission. For example, general practitioners in the UK revealed that they believe peri-natal transmission of HIV to stand at around 50% - when in fact the worst case scenario, where no treatment is available, stands at around 33%. With treatment, this transmission rate falls to under 0.1%.
Older women with HIV are facing new problems. Too often, the health system is not geared to deal with this in Austria. To deal with these and other challenges, an organisation was founded by Wiltrut Stefanek last year, primarily for women with HIV in Austria. It unites all the experience of women with HIV and people from the pharmaceutical industry and concerned people who want to get involved.
The International AIDS Conference is a chance to show that women from many countries across Europe and Central Asia are living with HIV and that women with HIV are actively seeking ways to improve the quality of life of others around them with the virus. Women with HIV should always be seen as part of the solution to this pandemic. The voices, experiences and perspectives of the women at this meeting and their many colleagues should be heard and heeded carefully by governments across Europe – and beyond.