The International Community of Women Living with HIV/AIDS

1. The International Community of Women Living with HIV/AIDS “by and for” HIV positive women www.icw.org Carmen Tarrades

2. Introduction • About ICW • Why specific human rights issues for women Living with HIV and AIDS? • What are some of our issues and concerns ? • Examples of our work – Silent Voices

3. Background to ICW • Started in 1992 • Run for and by HIV positive women • 4500 members in 138 countries – membership is open to HIV positive women and is free and confidential

4. ICW’s vision is: A world where all HIV positive women: • Have a respected and meaningful involvement; • Have full access to care and treatment (ACTS); • Enjoy full rights.

5. What is different about ICW? • ICW members speak for themselves and other positive women • They speak from their experience • They speak from their personal understanding of how policies will affect them as HIV positive women • We have democratic structures

6. As an organization, ICW: • Conducts advocacy skills building and training with HIV positive women • Facilitates e-forums for HIV positive women • Conducts research on issues of importance to HIV positive women • Produces and disseminates publications • Coordinates and works collaboratively with other organizations • Lobbies on HIV positive women’s rights

7. Our Human Rights • Women’s right to life and dignity • Women’s sexual and reproductive rights • Women’s right to non-discrimination • Governments’ and international community’s responsibility to treat and keep it’s citizens/women alive

8. Tools that support the Rights of Positive Women • CAIRO Declaration [ICDP] 1994 • CEDAW 1979 • UNGASS Declaration 2001 • Abuja Declaration 2001 • GIPA 1994 • The UN Guidelines [HR, Treatment, SRR]

9. Reproductive choices Women were threatened that they will not receive ARVs if they don’t take the contraception.’ “I want very much to have a baby, but I want to be confident he or she will be okay in every sense.” “I’d been to a hospital, and was told to have an IUD fitted. Then, when they checked my medical file and learned that I’ve got HIV they said ‘Oh! This one’s infected! The HIV-infected should not use it’”.

10. Sexual health choices • “What do you do about fulfilling your sexual needs and desires when you keep getting gynecological infections as I do? With treatment you can have healthy, pleasurable, non-violent sexual activity.”

11. Why meaningful involvement ‘We have organisations but men lead the organisations and our issues don’t get discussed’. (ICW member from South Africa) We’re weary of being asked to attend meetings as an after-thought, to stand up and provide a personal testimony but little else. The issue of ‘how I got infected’ matters far less than ‘what I did next’. We want to be included from the outset in deciding agendas, taking decisions and ensuring their implementation (ICW member from the UK) 'I was always the target of interviews but now I was part of the planning and interviewing. I gained self-confidence and made new friends.’ (ICW member from Thailand)

12. Silent Voices Participatory research into the problems faced by drug and alcohol using HIV+ women, living in London, who are or have been drug users… • Find out their experiences, including personal relationships and service access and barriers to use; • Create links between positive women drug users, with the help of local partner organizations; • Collate information on current policies and practice; • Develop advocacy tools around gender, sexual reproductive health rights, access to care, treatment and support, harm reduction and possibly prevention.

13. Background of HIV epidemic in the UK

16. Prevalence (UK only) - • During 2005, a reported 112 people were diagnosed with HIV probably acquired through injecting drug use. By the end of December 2005 4,392 people had acquired HIV by this route in total. Statistics show that 1348 women as opposed to 3075 men probably acquired HIV through injecting drug use (UK - all years until the end of March 2006). • The number of HIV positive women and men who do or have injected drugs is likely to be higher. These statistics reflect transmission route only.

17. Silent Voices: How we went about it Funding Researchers - training Steering group Focus groups (2)– formed the basis for interviews Individual interviews Report and Vision Paper for dissemination Plans to use the info. To influence policy and programmes

18. Disclosure and Sexuality • Disclosure to partners (drug use and HIV status) “It’s very hard – disclosure is the key – and some people they won’t understand like to use a condom and, sexual relationship is hard…. And then disclosure is a massive problem. It’s more easy to say, oh well I am a recovering addict because its like to say, ‘I been naughty once but I am ok now than to say I have HIV. Because when you say HIV, Wow!! People they judge you, straight away, its like, or my God! • Sexual lives, i.e. safe sex, abstinence “I was very frightened of rejection, to pass the virus to somebody else. Now I don’t worry so much because I know if I use a condom or preservative I don’t have to disclose it. But I’m always thinking that I am going to be rejected and….very difficult.”

19. Disclosure and Sexuality • Existing v new partners • Long term v short term “If you meet somebody new…the first day it’s OK, because you don’t give much information about yourself. But I panicky when I meet someone that I might have a relationship with, because you think: “they are going to start asking questions about your life, how do you get your money, what do you do?”…and I am just very scared. • Criminalisation

20. Disclosure and Sexuality Pressures from the community, including other activists … • “I suppose it [positive diagnosis] made me very aware of discrimination around drug users and HIV+ women as well. I really wasn’t expecting to come across that in the HIV community – I was expecting open arms and all that sort of stuff, so that was a real eye opener and it did change the way my life turned after that – I got a lot more active and focused my activism a bit more around drug using issues.”

21. Reproductive choices • Fears around health of mother and child “If I decided that it was something I wanted to do I think I would probably still go ahead with it seeing as it is really quite safe now but it makes it into a huge issue and the thought of taking all those drugs whilst pregnant – there a lot of issues and it has coloured how I feel about that.” • Concerns of sero-discordant couples • Co-infection • Accurate information and up-to-date technologies

22. Reproductive choices • Judgemental attitudes of health care staff “I had an awful experience when the baby was born, because I was in hospital for 5 days and the midwives were absolutely horrible to me. I wanted to make a complaint but I never had the time…I was tired. And I thought: “when I feel better” and I didn’t fill the papers or the letters. But I had a terrible experience.” • Lack of training for health staff

23. Recommendations • Pre and post-diagnosis support • Disclosure advice and trainings • Reproductive and sexual health services • Drug services and HIV services • Prison and other institutions - training • Employment rights And • Support groups and drug user involvement

24. The way forward… Drug user involvement… • ICW has funding to encourage HIV positive women who are drug users to actively participate within drug and alcohol action teams as service user representatives.

25. Advocacy cycle Programmes: Lobbying workshops, health rights ,policy literature, advocacy skills, research and M&E for advocacy Membership: Mobilization, needs assessments on-going mentoring Participation: Representation, Int, reg, & national meetings. Partnerships, dialogues with policy makers, health providers Dissemination: Project/programmes reports, Position paper, statements, newsletter, e-forums

26. “nothing for us without us” www.icw.org