Reaching the "Invisible"

Lital HollanderEATG

CREAThElital@esman.it

Centres for REproductive Assistance Techniques in hiv in Europe

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

• Ethical “dilemmas” and moral taboos

• Stigma and prejudice

• Do not make headlines

“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. No political “lever”

Illegal substancesIllicit activities

Limited liberty and autonomy“Guilty”

80% illicit drug usersVertical prof. relationships

Bound by secrecy

Vulnerability Prostitution Sexual activityNeedle sharing

Drug smuggling Sexual activity Sexual violence

Drug injecting practices

Desire for childrenDomestic violence

Inconvenient truths

Failure policing /abstinence strategiesNo control over traffic and abuse

No control over violence Failure to avoid drug trafficking

Harm reduction is necessary

Right for parenthoodFailure of safe sex / abstinence policy

Ethical / moral tension

Harm reduction while using substances

Personal health vs. Law enforcement

“walking dead” Autonomy of parents vs. risk of infection or being orphaned

Stigma and prejudice

Do not respond to prevention messagesAre not compliant with treatment

Cost to tax payers.“Doomed” lives

Useless, perverted and promiscuous

Children infected or orphaned Abstinence is practicable

“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)

• 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

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

l

45%

90%

Migraion Swim-UpWashing

1/8 HIV RNAtesting

SpermSperm washingwashingSemprini et al. Semprini et al. TheThe LancetLancet, 27 November 1992, 27 November 1992

Final dilution: 4 x 106 . Volume: 0.3-0.5 ml

Sperm washing works

• Retrospective CREAThE 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 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. USA2. Brazil3. Israel4. Tahiti5. South Africa6. Russia7. Kuwait8. Japan9. India10. Honduras11. Australia12. Venezuela

CREAThE 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 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 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”

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

• 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 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

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%, 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 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 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 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