Reaching the "Invisible"

1. Reaching the "Invisible" Lital Hollander EATG CREAThE lital@esman.it

2. Centres for REproductive Assistance Techniques in hiv in Europe

3. Vito Russo, AIDS activist, 1988 “Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you've lost more of your friends, but nobody else notices. It isn't happening to them.” True to this day!

4. “Invisibility” • Scarce empowerment. No political “lever” • Vulnerable • Political /management inconvenient truths • Ethical “dilemmas” and moral taboos • Stigma and prejudice • Do not make headlines

5. “Invisible” HIV groups • IV drug users • Sexual partners of PLWHA • Immigrants / ethnic minorities / migrating groups • Sex worker • Trafficked persons • Young children • Gay & Lesbian • Prison inmates • Geographical groups (Russian federation, Iran, China)

7. “Invisibility points” HIV information Prevention interventions / budgets Access to sexual / reproductive health services Social support Access to antiretroviral treatment Access to clinical trials

8. Our Interventions… • Information targeted to “invisible” groups • Patient education tools (website, printed) • Information HC workers, public • Civil society / NGO training • Advocacy / lobbying vs. authorities • Political pressure • Debate with pharma companies

9. Centres for REproductive Assistance Techniques in hiv in Europe

10. Sex/life partners of individuals with HIV • Approx 80% of PLWHA worldwide are heterosexuals in reproductive age • Prevention policies are based on abstinence and condom use with no solution for reproduction • High risk of intramarital HIV transmission • 38%-75% of spouses are infected by their partner (Portugal, India) • Limited ability to refuse unprotected sex to conceive

12. Sperm washing works • Retrospective CREAThE study • 3390 treatment cycles • 1036 HIV discordant couples • Not a single case of infection

14. … but outside Europe? • US: 1990 - one case of transmission after an IUI with simple semen centrifugation (no separation of leukocytes). CDC recommendation against. Not available • South America, South East Asia, Africa – largely not available Do we think we can actually TELL 20 milion people not to have children?

15. Non European patients receiving treatment in Italy • USA • Brazil • Israel • Tahiti • South Africa • Russia • Kuwait • Japan • India • Honduras • Australia • Venezuela

16. CREAThE activities for 2008 • Website – 1 December 2007 • SHARE – studying HIV and reproduction in Europe • Training of non European health care professionals

18. SHARE – Studying HIV And Reproduction in Europe • European register of reproductive practices in couples with HIV (assisted reproduction, spontaneous conception) • Prospective cohort study • Over 12 centres involved • Covers Europe, US, Israel, South Africa

21. EATG activities with EE citizens - information • COPE – Continuing Patient Education – translation of information • Organized informative events • Patient oriented symposium Glasgow conference • Sitges symposium “Research Agenda and Access to Experimental HCV Drugs for HIV/HCV Co-infected Peopleù”

22. EATG – Education / training • Ttreatment literacy training for Central European Activists • Training on clinical trials for Russian activists: basics of clinical trials design - scientific and ethical aspects • Regional efforts for universal access to treatment. • Joint EATG/EE activists meeting with pharmaceutical companies to discuss access, pricing policies, registration

23. EATG – advocacy / lobbying • Close follow up of EU presidency agenda • In anticipation of the Portuguese EU presidency, who will focus on migrants – organization of a onference on Migrants Health Rights in Lisbon • Civil Society Forum – inclusion of EE NGOs

24. EATG - political pressure • Russian Minister of Healthcare and Social Development: shortcomings in the standard of HIV care • Chair of the Commission on Narcotic Drugs and UNODC: NGOs ban from 50th Narcotic Drugs Commission annual session • Open letter on discriminatory statements of Ukrainian officials against gay, bisexual and transgender people

25. Conclusion • Even in Europe, invisible groups suffer neglect • NGO and comunication means focus.

27. Prison Inmates • Characteristics • High prevalence of HIV infection (Portugal 11%, Estonia 12%, Russian federation 4%) • High rates of drug use (between 22% and 86% in 15 European countries). • Common sexual activity (30% of inmates in a Federal Bureau of Prisons study) • High frequency of homosexual rape (9-20% of US federal inmates were victims of rape) • Problems: • cohersive testing • Inexistent o lacking prevention/harm reduction programs • Stigma / discrimination HIV positive inmates • Insufficient access to treatment and care • Forced inclusion in research • DOT

29. Prison inmates - solutions Recognize that many drug users cannot totally abstain from psychoactive substances in the short term Information, education and communication on HIV/AIDS Voluntary testing and counselin Distribution of condoms Bleach or other disinfectants Exchange of needles and syringes Substitution therapy

30. Trafficked women / girls Frequent and forced sex + untreated STDs High HIV prevalence (25-70% among rescued women/girls), proportional to time in brothel captivity (each month increases risk by 3-4%) No power to negotiate safe sex Detainment / deportation of trafficking victims Profiling as perpetrators of the epidemic rather than the victims Imposed medical care to “protect the community”

32. Trafficked women/girls Teaching negotiation and refusal skills to victims Reporting and direct intervention efforts to facilitate removal Victim oriented health services including medical assistance, protection from violence, social support, counseling, substance abuse treatment Education, and job training Housing/job solutions for victims shunned from returninghome