AIDS Vaccine Activist Luis Santiago Speaks with HIV InSite

AIDS Vaccine Activist Luis Santiago Speaks with HIV InSite

by Joe Wright, HIV InSite Guest Editor. This is the second in a series of interviews with AIDS vaccine experts.

Luis Santiago is also on the board of the AIDS Vaccine Advocacy Coalition, on the Community Advisory Board for New York’s Project Acheive (an HIV prevention and vaccine research site), a member of ACT-UP New York and a founder of ACT-UP New York’s committee ACT-UP Americas. And writes articles about vaccines for a Gay Men’s Health Crisis newsletter and web site. And–I’m sure I’m forgetting something.

There aren’t many people like Luis in the HIV vaccine world. Struggles over AIDS treatment produced a gaggle of activists who worked two jobs–day jobs and unpaid jobs, taking at least as much time, as AIDS activists. But AIDS has become increasingly professionalized; lots of those activists ended up getting day jobs in AIDS, while others died or fell away from AIDS politics for other reasons. And of the few activists in this mold who remain, fewer than a handful work on vaccine issues. Perhaps this is because the traditional base of this driven, focused and highly skilled kind of activism comes from the ACT-UP tradition, which has been mainly focused on AIDS treatments.

Luis Santiago also emerges from ACT-UP, but in this interview discusses his long involvement as an activist working on vaccine issues.

We begin with a discussion of a fateful meeting in 1994, when a National Institutes of Health panel decided not to go forward with a government-funded large-scale efficacy trial of that year’s versions of the gp120 vaccine. The meeting has particular resonance, because Don Francis and two other Genentech employees ended up spinning off Genentech’s gp120 effort into a company called VaxGen, and they are now beginning a privately funded efficacy trial of an updated version of their gp120 vaccine. At the time, Francis made no secret of his disdain for the 1994 decision, and some media accounts of the story made it seem as if the meeting had been “The activists versus the vaccine.” But as Santiago makes clear, the issues were rather more subtle than that. (Interestingly, he is also skeptical about the extent to which his comments and those of other activists who were concerned about that trial really influenced the final decision.)

Looking forward, Santiago discusses the advocacy issues for community activists looking at VaxGen‘s new trial. Incidentally, he ends the interview by giving praise to VaxGen for going forward with their trial; he is not an “either/or” kind of activist, as this interview makes clear. He notes the necessity for both effective risk reduction within the VaxGen trial; and effective recruitment of high-risk participants. Both, he suggests, are important issues for community advocates at local VaxGen sites. He also feels it’s important for VaxGen trial participants to know about the history of controversies over gp120–his own article on the topic (link) might be a good text for participants to use as a starting point.

Santiago also explains the history of ACT-UP Americas, a unique collaboration between New York-based Latino AIDS activists and Latin American groups. The group is one precedent for a set of relationships which will doubtlessly be essential to effective AIDS activism in the coming years. I find it interesting that ACT-UP Paris has also been increasingly focused on building relationships with advocates from countries in the South. Though much of this network-building has focused on issues of access to treatment, it could become valuable to community vaccine advocates as large vaccine trials become increasingly international.

At one point, Santiago suggests that there may need to be “an ACT-UP for vaccines.” At the same time, AVAC, the only current group exclusively focused on AIDS vaccine advocacy, has used a different model–a Board of Directors, no membership, and professional staff. The closest analogy is San Francisco’s former VACT-UP, Vaccine Advocates Committed to Universal Prevention, which has since folded its pioneering web site into AVAC’s site, while most of its members have moved on to other AIDS advocacy work. It seems to me that AIDS vaccine activism probably needs its own styles, its own ways of working–informed by the history of ACT-UP, but also taking its own path. But if that’s true, Luis Santiago–an activist and writer who is active locally, nationally and internationally–may just be one model of that new style.


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