HIV treatment activism began in the 1980s as community-based organizations started small clinical trials of experimental compounds and demanded more research into treatment options. Key events included the Denver Principles in 1983 which emphasized that people with AIDS should be involved in decisions about them. Groups like Project Inform and ACT UP advocated for expanded access to experimental treatments and an end to placebo-controlled trials. The European AIDS Treatment Group was founded in 1992 to help accelerate access to treatments in Europe. HIV treatment activism continues to focus on issues like ensuring access to care, establishing standards, reducing discrimination, and involving people living with HIV in research.

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)