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Philly ACT UPer and Health Gap Founder Tackles the Challenges of an Aging Activist Movement

“Recreating the Funnel”

Among the numerous hackneyed saws of activism, a front-runner for the most obviously true and often most objectively impossible is, “We need to stop just being reactive and be proactive.” But it’s rare that we have the leisure to sit around and craft exquisite theories and strategies while programs get cut, people get evicted, needles don’t get exchanged, and biomedical research focuses on arcane résumé-building theses — rather than closing gaping holes in our understanding of basic science and expanding actual therapeutic options.

The global epidemic continues to escalate, new HIV transmission is unabated in the U.S. and continues to reflect all the racism, homophobia and stigma our society has to offer, and Federal politics threaten to bring back the depressing first decade of the epidemic rather than sustaining the decidedly more mixed bag of the Clinton era. So we often forge ahead from problem to problem, making great strides and saving lives even as the AIDS crisis remains decidedly not over. Yet there seems to be something in the air spurring long-time and newer activists to wax pro-active these days, mining the rich history of U.S. AIDS activism — often focusing on the heyday of ACT UP New York and transitions with the advent of the discipline of treatment activism — in order to look for the way forward.

In past months, Gregg Gonsalves, David Barr and other AIDS treatment activist leaders have used these and other pages to reflect on the history of AIDS activism and ponder the challenges of our current situation. As a Revson Fellow at Columbia University this year, Julie Davids has been able to take some time away from the day-to-day campaign work of ACT UP/Philadelphia and Health GAP in order to further these conversations and plan concrete next steps in U.S. AIDS organizing on local, national and international issues.

As a member of ACT UP Philadelphia since 1990, I have seen our group grown, shrink, change, grow, and change. Currently, we are likely the largest all-volunteer grassroots AIDS group in the country, and our primary constituency and membership is African American people living with HIV. In 1995, I helped start Project TEACH at Philadelphia FIGHT, a treatment education training program for people living with HIV that remains rooted in principles of AIDS activism and community organizing. And I am a founding member and worked as community organizer for Health GAP, the U.S. coalition focused on the fight for global AIDS treatment access.

Through these experiences, I have been able to learn AIDS treatment activism through the lens of community organizing. Although I consider myself a treatment activist and have put my time in on the Community Constituency Group (CCG) and read my fair share of clinical trial protocols and medical journals, I spend most of my time focused on strategies to build power and effect change — often drawing on models of organizing and mobilization from a range of activist traditions.

Many times, ACT UP Philadelphia members have been asked how we have managed to build the capacity to have hundreds of people of color with HIV and their loved ones turn out to fierce protests in Washington, D.C. on seemingly arcane issues like compulsory licensing for the manufacture of antiretroviral treatments. The short answer is that we worked very hard for many years. We kept coming back to the same community organizations — many of which are neighborhood-based drug treatment programs, intimately familiar with the realities of HIV. Even if few were interested, we returned within weeks or months, becoming a more familiar presence and ensuring that people got their questions answered and knew how to get a hold of us. We prioritized issues and sustained campaigns that most heavily affected low-income individuals and people of color living with HIV — like needle exchange, housing and Medicaid managed care — and developed training programs like Project TEACH that gave potential activists weeks and months to “check out” AIDS activism and decide if it was for them.

In the May 2002 TAGline, David Barr writes: “Research advocacy is a luxurious area of activism. Activists from poorer communities often have to work on health care access, housing needs, and other priorities before they can turn their attention to the rarified world of clinical research.” This is an undeniably legitimate but limited analysis of barriers to the participation of people with HIV from communities hardest hit by HIV. By looking at the ways people get involved in movements and groups, the ways we prioritize and describe treatment activist campaigns, and examining what worked in the development of leaders in the histories of ACT UP/New York and other groups, we can meet this challenge for the next decade of AIDS activism.

In organizing parlance, we could say that the “parameters” of what we call treatment activism are made up of specific issues. Issues, unlike mere problems, refer to situations for which we think we know the solution. As activists, we come together to be powerful enough to force the problems into issues, and to win the solutions. Thus, if people do not have a shared sense of the possible, they will not agree on whether a problem is an issue or not.

The historical perception of ACT UP as a movement is that middle class gay white men became outraged when they realized what it was like to be faced with a disease and get treated like shit by the government and medical establishment. This is oversimplistic, but does speak to the fact that many people in ACT UP felt that AIDS research issues were issues — that they could build power to change the way research was conducted and thereby make treatments available.

It is worth considering that if you come from a community that has always had lousy health care, has a life expectancy decades shorter than affluent white communities, and in which medical conditions like diabetes and high blood pressure are endemic, it may not seem that it is realistic to fight for research issues — especially if there are no drugs that seem to be doing anyone any good. As challenging as it can be to obtain decent housing for someone, this can often seem like more of a winnable issue than an abstract research goal — especially during the days when people were inventing treatment activism in the vacuum of no effective treatments.

Fast forward to 2002. I have found that activists from poorer communities are keenly interested in research. Many of them have been in research studies, and they get mad as hell when they realize they were put on drugs for which there was no evidence of efficacy. Many also want to know where the research is on neuropathy and other common toxicities — especially since the majority of many TEACH participants are suffering from them. They want to know if the risk of heart problems will be greater in communities of color, where heart disease is already common. If someone wants to “storm the NIH” over side effects and toxicity research, I’m sure we could fill those buses.

I’d ask us to consider that if the parameters of what gets considered as a treatment activist issue, and who is interested in them, have in some ways been cemented into our heads from a time in which there were little to no effective therapies for HIV. And why is it that the first pivotal images of ACT UP treatment protests — the battles to get “drugs into bodies” — are considered treatment activism and not health care access? I see the AZT protests as access activism, just as Treatment Access Campaign in South Africa is fighting for public sector antiretroviral therapy access today. Is expanded access a research issue or an access issue. It’s both, of course. Perhaps if we allow ourselves to make these boundaries fuzzy, we can craft issues that will resonate across communities and constituencies.

David writes, “We taught ourselves and each other about how drugs are developed, how clinical research is conducted, how to understand the study results.” People who have been denied a well-funded education may need some time to discover that they can develop a facility with treatment and research issues. A good place to start is with what they already know. In Project TEACH, we begin by talking about what life with HIV really feels like, and move on to issues like disclosure and spirituality. We throw in CD4 and viral load in the first week, but start it out by asking people what they already know about these surrogate markers. We don’t officially talk about antiviral guidelines until week 3 or 4 — long enough for most people to settle in and recognize they don’t have to be experts in order to understand treatment information.

What these people already know is that health care is political. Shared frustration and anger about continued neglect of the AIDS crisis that rages on in our neighborhoods can inspire us to seek more information — which is where we can use reports that identify the obstacles to progress without requiring a ton of specialized research knowledge. Sometimes I have lacked the tools to give someone to take the next steps as activists: who they can call, where they should write letters. The AIDS Treatment Activist Coalition (ATAC) has started to help fill these gaps, and I commend Project Inform’s Treatment Action Network for providing consistent alerts for their contacts around the country. I would guess that some of the people who ended up being data hound research activists cut their teeth on more broad-based issues, such as expanded access. People start with more accessible chunks of information, and then figure out that they can specialize. Or they start from experience: “Our feet burn so badly that we can’t have a march. That’s why we’re sitting here in your office until you commit to taking on this neuropathy research agenda, Mr. NIH Director.”

And we have treatment activists all over the country right now: part of the population of two million people warehoused in prisons. Like jailhouse lawyers, they are teaching themselves complex treatment information and fighting for their lives and the lives of fellow inmates. How do they tap into campaigns that are internet-based? How do we incorporate prison issues — a key case in which treatment issues are access issues — to help people stay alive on the inside in order to be able to join us in struggle when they are released? There are tremendous reservoirs of passion and experience in communities of people with HIV who have not traditionally been looked to as treatment activists. How do we rebuild our movement to take our next steps together? We need to recognize that activism is built from relationships, and that activists need something to do.

Imagine the heady days of ACT UP/New York like the top of a funnel. The funnel has ten different spouts at the bottom. Lots and lots of people come in. They flirt, they argue, they go out for drinks, they get arrested. Some funnel into the treatment geek spouts. Others funnel into the needle exchange spout. Those swimming around in the funnel above them, cheer them on, hear reports, argue a bit about the bottom line of what needs to be done, and swing into action. And then some of them stick around and find their own spout. That’s leadership development. And it worked well for many years, not just in the well-documented years of the ACT UP chapter in New York, but in other ACT UP chapters around the country to varying degrees. For me, the question is, “How do you recreate that funnel?” For years, we have been doing pretty much the opposite: noticing local HIV-positive leaders and, one by one, isolating them on community advisory boards and planning councils where their potential power is often, at best, hidden behind an impenetrable wall of Robert’s Rules of Order and backroom dealing.

Perhaps, then, we need to examine the pipeline to the funnel. How do people get to a place where they consider joining an activist organization or campaign? Often, it is through friendship networks or existing organizations. But that can limit participation to particular communities. Community education and “teach-ins” can bring the recruitment effort to different folks, but run the risk of exposing themselves as brute opportunist recruitment efforts to diversify a movement that has already decided what it wants to do and is just after bodies.

When we started Project TEACH, we realized we had the opportunity to present ourselves to people living with HIV over time — twice a week for eight weeks, people get together to share experiences and ideas, debate touchy subjects, and learn key treatment and research information in the context of the activism that made it possible. Usually, there is an ACT UP protest during the intervening time, and class members may decide to participate and then report back to the rest of the participants about their experiences.

Project TEACH and ACT UP/Philadelphia are good counterparts. TEACH provides a grounding in treatment education and activist concepts, and ACT UP gives people turned on by this stuff a role. About 75 percent of ACT UP/Philly’s HIV-positive membership are Project TEACH graduates. But, as hard as it can be to inspire people to take on a bunch of thankless activist work, it is even harder to start it from scratch. I am not sure that the TEACH model, even if way pro-activist, would work in a city or region without a viable activist group for people to join.

Call it the limits of volunteerism or whatever you’d like, but it is time to put some money behind hiring organizers to create structures to help community leaders come together to join or initiate campaigns. And let’s keep bringing people together through ATAC and NATAF — but focus more on the follow-up to keep us working together. ACT UP/Philly roped me in — for at least twelve years now — because it gave me a community and a role: You want to help? Write a press release. And work with an experienced person to figure out what needs to change about that press release, so you can do it better next time. And then let’s go out for a snack, and gossip, and tell you some more about living with HIV and why we are so angry, and some of the things we did as civil rights and gay liberation activists. While we’re out, we’ll learn more about what gets you going, what you are good at, and then we can give you more work to do.

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