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Reaching the Reaching the "Invisible" Lital Hollander EATG CREATh. E [email protected] it

Centres for REproductive Assistance Techniques in hiv in Europe Centres for REproductive Assistance Techniques in hiv in Europe

Vito Russo, AIDS activist, 1988 “Living with AIDS is like living through a war 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!

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

“Invisible” HIV groups • • • IV drug users Sexual partners of PLWHA Immigrants “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)

IV drug users Prison inmates Former USSR citizens Sexual partners of PLWHA Scarce empowerment. IV drug users Prison inmates Former USSR citizens Sexual partners of PLWHA Scarce empowerment. No political “lever” Illegal substances Illicit activities Limited liberty and autonomy “Guilty” 80% illicit drug users Vertical prof. relationships Bound by secrecy Vulnerability Prostitution Sexual activity Needle sharing Drug smuggling Sexual activity Sexual violence Drug injecting practices Desire for children Domestic violence Inconvenient truths Failure policing /abstinence strategies No control over traffic and abuse No control over violence Failure to avoid drug trafficking Harm reduction is necessary Right for parenthood Failure of safe sex / abstinence policy Ethical / moral tension Harm reduction while using substances Personal health vs. “walking dead” Law enforcement Autonomy of parents vs. risk of infection or being orphaned Stigma and prejudice Do not respond to prevention messages Are not compliant with treatment Cost to tax payers. Useless, perverted “Doomed” lives and promiscuous Children infected or orphaned Abstinence is practicable

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

Our Interventions… • • Information targeted to “invisible” groups Patient education tools (website, printed) 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

Centres for REproductive Assistance Techniques in hiv in Europe Centres for REproductive Assistance Techniques in hiv in Europe

Sex/life partners of individuals with HIV • Approx 80% of PLWHA worldwide are heterosexuals 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

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

… but outside Europe? • US: 1990 - one case of transmission after an … 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?

Non European patients receiving treatment in Italy 1. USA 2. Brazil 3. Israel 4. Non European patients receiving treatment in Italy 1. USA 2. Brazil 3. Israel 4. Tahiti 5. South Africa 6. Russia 7. Kuwait 8. Japan 9. India 10. Honduras 11. Australia 12. Venezuela

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

SHARE – Studying HIV And Reproduction in Europe • European register of reproductive practices 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

EATG activities with EE citizens information • COPE – Continuing Patient Education – translation 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 Coinfected Peopleù”

EATG – Education / training • Ttreatment literacy training for Central European Activists • 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

EATG – advocacy / lobbying • Close follow up of EU presidency agenda • 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

EATG - political pressure • Russian Minister of Healthcare and Social Development: shortcomings in 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 50 th Narcotic Drugs Commission annual session • Open letter on discriminatory statements of Ukrainian officials against gay, bisexual and transgender people

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

Prison Inmates • Characteristics – High prevalence of HIV infection (Portugal 11%, Estonia 12%, 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

Prison inmates - solutions • Recognize that many drug users cannot totally abstain from 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

Trafficked women / girls • Frequent and forced sex + untreated STDs • High 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”

Trafficked women/girls • Teaching negotiation and refusal skills to victims • Reporting and direct 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 returning home