6th Regional Conference in Sarajevo, May 17-18 2012.

1. HIV treatment activism
–
bridge that connects
Tomislav Vurušić
Lux Vitae
Pula, Croatia

2. History of AIDS
 1981: First AIDS cases reported
 1980ies: Community-based treatment research
 1984: HIV described
 1987: first AIDS-treatment approved (azidothymidine,
AZT)
 1991: didanosine (ddI) & zalcitabine (ddC) approved
 2012: 26 antiretroviral drugs (ARVs)

3. The Denver Principles (1983)
 People with AIDS (PWAs) meet in Denver for the
conference “Health Pioneering in the Eighties”
 “We condemn attempts to label us as "victims," a
term which implies defeat, and we are only
occasionally "patients," a term which implies
passivity, helplessness, and dependence upon the
care of others. We are "People With AIDS."
 "Nothing about Us, Without Us“

4. HIV treatment history
 All known antibacterial or antiviral treatments were
ineffective
 No governmental agency or pharmaceutical company
made any efforts in therapeutical research
 Only some basic biological research was funded
 Government-sponsored research into treatment
options started in the U.S.A. only after gay men had
demonstrated for the administration‘s support for
treatment research

5.  Community organized small clinical trials on some
experimental compounds
 E.g. a trial including ribavirin and isoprinosine
 With the support from volunteering physicians and
scientists, community-based organizations had
undertaken some of the first treatment trials in the
AIDS field
 1987 approval of AZT as first AIDS treatment
 Anti-cancer compound in 1960 never developped
 Today known as zidovudine – ZDV (Retrovir)

6. Project Inform – San Francisco
 1985: Project Inform created by Martin Delaney & others
 1989: a parallel track program for ddI annouced by Project Inform
and U.S. National Institute of Allergy and Infectious Diseases
 included much more patients and had less restrictive entry
criteria
 Early 1990s: Project Inform instrumental in introducing accelerated
approval & expanded access programmes
 “Who should decide which risks are acceptable, the bureaucracy in
Washington or the patient whose life is on the line?”
 Delaney, “Acceptable Risks” (Poseidon Press, 1992)

7. Act Up – New York
 1987: Act Up created by Larry Kramer, playwright
& author (GMHC founder)
 use of placebos in clinical trials has been one of the
most controversial issues in clinical AIDS research
and other disease areas
 1989: ACT UP New York demanded an end to
placebo-controlled trials that required "body counts"
or a „death toll“ to prove efficacy

8. AIDS activism in Europe
 In 1989, 1990, the European situation differed from the US
 Drug companies would initiate clinical trials in Europe only
after they had obtained positive results from trials in the US
 delay in access to treatments in Europe
 early 1992: AIDS activists from 10 European countries met in
Berlin to found an organization which aimed to overcome
these difficulties and accelerate access to experimental
treatments in Europe
 European AIDS Treatment Group (EATG) was founded
 One of first initiative was EU-wide EAP (expanded access program)

9. EATG in 1992
Scope:
 To achieve effective treatment & access to experimental therapies for as
many PLWHA as possible & as soon as possible.
 To enable people with HIV to have maximum control over the treatment and
research agenda.
Focus on:
 Research priorities and ethics
 Access to information
 Access to medical services
 Access to experimental drugs
 Pan-European communication

10. EATG today
 >90 members, majority PLWHA, cca. 35 countries,
WHO Europe
 Working Groups: ECAB, PWG, DMAG
 European Community Advisory Board: Scientific
research, drug development, research networks, EMA -
under confidentiality
 Policy Working Group: Policy & advocacy work –
Commission, Parliament, multilateral organisations
 Development and Membership Advisory
Group: Development, governance

11. Challenges of HIV treatment activism
 Continuous funding for HIV/AIDS treatment and care
 Access to treatments in underserved communities and/or regions
 Establishing a standard of care
 End to discrimination to PLWHA
 Involvement and active participation in research and trials
 Access to information
 Tratment interruptions

12. Case of South Eastern Europe
 Registration of drugs very late (e.g. Croatia)
 Abacavir: FDA (1998), EMA (1999), Croatia (2005)
 Efavirenz: FDA (1998), EMA (1999), Croatia (2004)
 TDF/FTC: FDA (2004), EMA (2005), Croatia (2009)
 Registration of a drug doesn’t mean immediately availability for
people in need
 Health insurance drug list and price of a drug
 Donation by pharmaceutical company of needed drug
 Emergency guidance on ART forced treatment interruptions due to
drug unavailability (forced stock-outs) for people living with HIV
and their care providers in Europe and Central Asia
 Issued by the European AIDS Treatment Group, October 2011

13. Treatment activism organisations in region
 EATG (European AIDS Treatment Group)
 NeLP (Network of low-prevalence countries in
Central and South-East Europe)

14. Central and South East Europe

15. Budapest Declaration (NeLP)
 Key areas:
 Treatment and care
 Prevention
 Key populations
 Policies and legislations

16. The Website www.nelp-hiv.org
• Country profiles
• Epidemiological fact sheets
• Prevention
• Treatment and care (ARV – prices)
• Institutional background: health services, financing of services
• Legislation
• Budapest declaration
• News

17. Who are activists?
 http://www.youtube.com/watch?v=d1-j0hLgPEQ
 Song from a movie “And The Band Played On (1993)

18. Thank you!!!
18
 "Care for us and accept us -
we are all human beings. We
are normal. We have hands.
We have feet. We can walk,
we can talk, we have needs
just like everyone else - don't
be afraid of us - we are all the
same!“
Nkosi Johnson (February 4,
1989 – June 1, 2001)