Download Invisible - WHCA - Workshops, Networks and Projects

Reaching the "Invisible"
Lital Hollander
EATG
CREAThE
[email protected]
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”
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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
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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 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. Law
enforcement
“walking dead”
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”
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HIV information
Prevention interventions / budgets
Access to sexual / reproductive health services
Social support
Access to antiretroviral treatment
Access to clinical trials
Our Interventions…
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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
Sperm washing
Semprini et al. The Lancet, 27 November 1992
Migraion
Washing
Swim-Up
45%
l
1/8
HIV RNA
testing
90%
Final dilution: 4 x 106 . Volume: 0.3-0.5 ml
Sperm washing works
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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. USA
2. Brazil
3. Israel
4. Tahiti
5. South Africa
6. Russia
7. Kuwait
8. Japan
9. India
10. Honduras
11. Australia
12. 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 Coinfected 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:
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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