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From Passion to Politics: What Moves People to Take Action?

The 2007 Princeton Colloquium on Public and International Affairs

Access to Antiretrovirals for HIV: How Activism Has Translated into Political Action

By Donna Liu
Apr20, 2007
Moderator: Christina H. Paxson, Professor of Economics and Public Affairs; Director, Center for Health and Wellbeing; Faculty Associate, Office of Population Research, Woodrow Wilson School of Public and International Affairs, Princeton University Panelists: David Barr, Executive Director of The HIV Collaborative Fund, Tides Foundation João G. Biehl, Associate Professor of Anthropology, Harold Willis Dodds Presidential University Preceptor, Department of Anthropology, Princeton University Jennifer Kates, Vice President and Director of HIV Policy, Kaiser Family Foundation Evan S. Lieberman, Assistant Professor Politics, Richard Stockton Bicentennial Preceptor, Department of Politics, Princeton University
Jennifer Kates:  How became involved.  Friends sick and dying.  Community level work, came to WWS knowing wanted to do policy work.

Set the stage.  AIDS identified in 1981.  Go back to 1984 when had identified the virus.  Test for HIV not available until 1985.  First antiretroviral not approved until 1987.  So almost entire first decade of AIDS there was nothing.  Void in available treatments.  Void filled by activism in research and treatment.  Changed way in which government was organized in doing research, approve drugs, in way business is done.

Timeline of key events on Kaiser Foundation website.

Joao Biehl:  Brazil made history in field of AIDS.  in 1996 first to universalize access to AIDS therapies, because of unexpected alliance of activists, industry, and govt.  AIDS mortality subsequently fell by 70%.  Challenge for other countries with AIDS.

To understand Brazil, investigated how therapies mixed with politics.  Began when called by activist organization in 1992 to see what was happening at grassroots level.  Was there when poor patients squatted in abandoned hospital and set up own care.  Returned to see how they established selves.  1996, went back to see what difference antiretrovirals did in this community.

In the beginning of the book, show how in 90's, AIDS activists actively participated in policy making.  Design and prevention work, claiming access to medicines as a human right.  passed legislation.  

Government put in place infrastructure to manufacture drugs by reverse engineering of antiretrovirals.  Strong national and interanational support.  Brazil had cheap first-line AR, but patients need new drugs.  Budget has doubled.  Public health center on pharma distribution needed to keep rollout in place.  

On the ground administrative problems abound.  Variations in AIDS care have emerged.  Ex-patients rarely become activists now.  Politics of survival.

Evan Lieberman:
Experience in South Africa, which is tragic example of spread of AIDS.  In 1991 was member of policy task force, sent as junior to South Africa to do field research.  Weren't focussed on AIDS but on post-apartheid transition.  But remember walking through township and knew that AIDS had become a problem.  Stopped at traditional healer.  He said AIDS no problem, had a cure on his shelf.  

Returned to SA again in 1997-98.  Was doing work on taxation and other issues.  Started reading about AIDS and realized then that was what wanted to do research on.  Why would a country in the face of this epidemic... when we know how to prevent the spread... why would countries respond in such different ways?  I was working on prevention, not treatment.  Midway through project, realized treatment was part of the game.  Brazil made treatment a viable reality.  At Princeton have been able to host a colloquium series on impact of treatment.  AIDS may sound like medical issue but is profound social issue.

David Barr:  
Been doing AIDS work since 1985.  Communities affected by AIDS were the first to respond.  First, develop basic support mechanisms for people on death beds.  How to care for people, get info out.  Second level of mobilization was education, safe sex, prevention approaches to HIV.  Next level of advocacy came with demand for treatment and look at research and drug development process.

Other than scientific advances, all of the major advances in HIV response since 1981 came from people with AIDS.

Has led to most ambitious public health undertaking in history.  Getting drugs out to developing world tremendous challenge.  Empowerment theory is particularly valuable for HIV.  Need long-term engagement from people who are affected.  Individual empowerment essential to overcome stigma of AIDS.  

Christina Paxson:
Question for panelists:  is HIV/AIDS activism exceptional?  How is this different than access to treatment of malaria and other health problems.  

Kates:  Yes and no.  In some ways, when look at history of AIDS activism it does follow from social movements that have responded to other issues.  Some of the tactics are similar to civil rights movement, etc.  But some exceptional aspects as well, and some of these are helping activism in other areas as well.

One exception is the nature of disease itself.  Communities in our country experiencing epidemic in different ways.  Globally, have altered age structures and life expectancies.  What's unique about HIV is primarily affecting young people who contribute to society.  That had not occurred in this way before.  Reverse life expectancy gains in some countries.

Secondly, behaviors that put people at risk are culturally stigmatized.   Not the same as SARS or malaria.

Third unique aspect is that way the social movement has been about identity.  

Another aspect, in US in particular, one of the first communities most affected was gay community meant that part of that response involved very creative use of media, art, now a big part of what happens in other activist movements now.

Lieberman:  book by Margaret King about transnational activists.  talk about boomerang model. Local activists have concern, try to get policy changed, state blocks it, it comes back around through transnational networks, comes back around through international orgs like UN, force swirl around and clunks government back in the head.  That model applies to AIDS, environment, other types of issues.  In that way AIDS not unique.  But some features like sex, blood, and drugs have heightened intensity of movement.  

AIDS different from other diseases because other diseases don't have the compelling narratives.  Now see other diseases getting some attention because of attention given to AIDS.

Biehl:  Encroachment of activism within the state.  Activists end up doing efficient work for a government that was at a loss.  Couch work in terms of right to life.  Nov 96, Brazil signed property rights agreement.  Following year increase in drugs significant.  There are many threshholds to cross.  new landscapes emerge.  AIDS activism in Brazil set the tone.  Became a model of activism today.  Pattients are claiming right to citizenship in terms of access to medicines.  Pharmas lobby activists to lobby government for access to medicines.

Barr:  in the US, convergence of agendas in 80s and 90s.  Bush and Quayle behind more rapid drug approval industry.  Pharma and government's initial response to treatment activists asking to be a part of the process was "no way".  A few key people opened the door.  Once got to the table, there was a transformation in thinking.  Getting patients involved in drug development.  

AIDS exceptional in that there is no cure.  So public health practices for things such as TB won't work for AIDS.  Sometimes think AIDS is exceptional in that serve as catalyst for change... will transform how look at health delivery around the world and the right to health.

Paxson:  Why activism successful in some countries and not in others?  How social movements concerning AIDS have changed over time?

Biehl:  Interviewed several key players over time.  Very aware that activism became professionalized.  Also end up enhancing administrative capacity of the state.  In the process had this group of activists ensuring access to ARV.  

At national level, Brazilian NGOs trying to establish partnerships with other countries.  Now also network of technology transfer.  Trying to find cheaper technologies, therapies.  But on local level, NGOs not keeping pace wtih demands of the illness.

Barr:  More activism in the world than people may know about.  Last couple of years spending time with people in China, India, Russia - in Russia, all got infected when shot heroin as kids and now are activists.  Lot of factors differ from country to country.  poverty, communications, history of civil society.  e.g. took a lot longer to get things going in Russia than South Africa.  But this notion of people with HIV become empowered and responding to their situation is universal.

How has activism changed over time?  We have done a bad job of training people in the US.  Professionalism is essential, but AIDS is a big issue now and there are NGOs that exist just to keep funding streams moving.

Lieberman:  Compares Botswana, S. Africa, India.  Wide variety of success rates.  AIDS have driven some movements forward, but also generated a lot of opposition.  No strict preconditions to success.  AIDS not understood as risk everywhere.  Even in parts of SA where high incidence.  Social boundaries play huge role.  e.g. countries where divisive ethnic boundaries, that is a barrier to success.  In countries with more fluid boundaries, awareness of shared risk, easier to ask govt to do something about it.

Kates:  Treatment activism.  Russia has poor access, but people are becoming empowered.  But because of lack of civil society, government lack of response, not relatively successful.  When individual has concept of survival, and why it is important, that is a driving force, and a common part of the movements that have formed.  I deserve to survive and am going to demand of governments the right to survive.  

In terms of movement changing over time, in the US, has been coopted in some ways, not necessarily bad.  part of research process.  Some of loss of activism knowledge because of death.  Movement successful in the beginning, became part of institutions today.  No precedent for what is the next phase of activism?  Why haven't been able to mobilize?

General questions:
Q:  I understand that in Brazil, AIDS not demonized.  Catholic church didn't stand in the way.  On the board of an AIDS ministry in Houston.  African-american megachurch.  Because don't feel acknowledged by greater AIDS community... question is, why is there no african-american on the panel?  

Barr:  Treatment changed activism in the US.  Allowed middle-class white gay men to become complacent.  Threat has been addressed so will go on with life.  AIDS increasingly becoming disease of color and poverty.  

Kates:  Impact on black community so striking.  Empowered black activists are leading the movement, working with church, trying to work with organizations that reach the black community.  We're always too late.  50% of new AIDS cases are among african-americans.  That started 10 years ago.  What happens with HIV is that once we get to that aha moment, and realize community has been affected, it's almost too late to get ahead of it.  That's why intervention is so hard.  Have to reach that point before getting a response.

Biehl:  why black leadership so slow in addressing it?
Barr:  black leaders fought against needle exchange.  did not acknowledge high rate.  has been incredibly slow to respond.  would say same about leadership of women's movement.

Kates:  Like South Africa, when faced with so many problems, it is daunting to take on yet another.  

Lieberman:  need to think about this as politics of empathy.  need to think about all in this together.  Another thing to remember is that AIDS takes 7-10 years to be symptomatic.  

Biehl: have worked with social epidemiologists.  Have found about 3/4 of population unaccounted for.  Survival rate of African-Brazilians much lower, access to treatment much lower.  Race and class are huge factors.  One of huge challenges is for organization to cut across these lines.  Complicated to sustain rollout of campaign

Q:  about tactics.  Really cool street tactics.  Wondering what you see as connection between those things and the policy world, and whether played a role.  how does compare to civil rights or peace movement.

Barr:  I planned FDA demo.  We wrote, asked for discussion, they didn't respond.  Eventually said had to go and take over the building.  A lot of debate about that demo and where to hold it.  1,000 people took it over and got a lot of publicity.  After that demo, they returned our phone calls and everything changed.  Same with pharma.  A lot of demos but pharma wouldn't respond except to press.  The other piece that was important is that we were really angry.  

End session


Apr20, 2007
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