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Scrapping Volunteer Model Meant Curtains for Activist Conscripts and Paved Way for TAG Ascendency

“Urgent Need to Teach, Train”

Survey the leadership of major AIDS advocacy organizations, scan the mastheads of treatment publications, and chances are you’ll come across name after name of T+D and TAG alumni/ae. Peppered throughout the ranks of medical residency programs, AIDS service organizations, HIV vaccine groups and research labs across the land are the young men and women who were first initiated into the heady mix of science, social policy and protest through the living room training ground of 1990s treatment activism.

And as these same pioneers, many of them surprised to find themselves still among the living, slip gracefully into their (often staid) middle years, they leave in their stead somewhat of a dwindling pool of fresh recruits. The activist M.A.S.H. units have long ago rolled up their tents and left town. Activist apprenticeships are now something of an anachronism, if not extinct entirely. The NATAFs and ATACs and CCGs promise to institutionalize the identification and training of ambitious new protégé(e)s. But will they prove sufficient, in this post-millennial activist age, to ensure a steady maturation of quick-witted, crackerjack idealists? David Barr surveys the landscape, past and present, to ponder what we’ve given up to get where we are today.

One of the things that made ACT UP so special was that it was made up of ordinary people who wanted to make a difference in the struggle against the neglect of the AIDS crisis. Many of us had AIDS ourselves, and our activism provided us with a way to fight back and find strength. Particularly for those of us who got involved with treatment and research activism, the work was a constant and challenging learning process. Most of us had little to no background in science or medicine. We taught ourselves and each other about how drugs are developed, how clinical research is conducted, how to understand the study results.

As new people would come into the fold, they would learn from those who had already developed some understanding. We had teach-ins, trainings, and countless meetings where issue after issue would be discussed and debated. People would volunteer for projects: become “drug buddies” following the research progress of each new drug, devising a plan to move the research faster or make it better. The new people learned from the more experienced people. That was how the model of the treatment activist was created.

When we split off from ACT UP in 1991 to form TAG, the structure of the new organization did not really differ from that of ACT UP’s Treatment & Data (T+D) Committee. We were still an all-volunteer group that conducted our business through our weekly Tuesday night membership meetings — held initially at Charlie Franchino’s Downing Street apartment, then later at Marvin Shulman’s Fifth Avenue loft in the Flatiron District. The priorities were set by a vote of the members. New people learned and came up through the ranks by attending those meetings, joining committees, volunteering for projects and being mentored by others. This not only allowed newcomers to find a place for themselves and, therefore, fulfill their personal need for activism. It also meant that TAG had an institutional mechanism for bringing in more and more people to do the work, expand the organization’s agenda, and replace those people who needed to stop working when their illness would finally overwhelm them. This structure also provided us with a sense of community and security that was as important as the work itself — if not more so.

Those TAG meetings produced some monumental work, but the dinners that often followed them were just as important to me. The camaraderie we felt provided solace and support. Yes, it was often a competitive environment, but the friendships created through TAG in those years were strong and, despite the competition and constant bickering, deep and fulfilling.

As time went on, however, the work became more complex, more specialized. As activists became more of a part of the research process, the need for full-time workers grew. A small group of people became responsible for the most of the work. These people needed financial support from the organization in order to do this work full-time. Also, because the TAG leadership was becoming responsible for the bulk of the work, they needed the authority to make decisions and set priorities for the group. Administrative and fundraising needs also grew. The success of the organization required a change in structure.

TAG moved to a more traditional model of an advocacy organization — one governed by a Board of Directors and led by a paid staff. This change — the “professionalization” of the treatment activist — was essential. Without this change, the next phase of the work would not have been accomplished. That work, including the pivotal report on the AIDS research effort at the NIH and the passage of the NIH Revitalization Act, required full-time staff who received the support — financial and administrative — that only a Board/staff structure could provide. The value of that structural shift is seen in the continued success of TAG and other treatment advocacy organizations like it.

But that change also came at a cost. What was sacrificed was the membership. TAG was no longer a place where newcomers could learn how to become treatment activists. It was no longer a place where you could learn by volunteering for a project and work your way up through the ranks into a position of leadership. Those opportunities became few and far between. Also lost was the sense of support and community that the membership model provided. Of those who have survived, so many have drifted away because they no longer had a role to play.

The changes in structure of TAG were essential. TAG would not have continued to grow and be as effective as it became without them, but the costs were great. The membership knew the change was needed and voted to approve the shift to a Board/staff model. It was a difficult and painful discussion. Membership and committee meetings continued, but gradually, their value diminished. The real work was now taking place in between the meetings. Rather than strategy sessions, the meetings became reports. As people no longer felt their presence was helping to produce change, they stopped coming.

One negative result of this change was — and is — the difficulty of building new leadership. Another result was an increasing elitism among the small group of advocates who were now employed to attend meetings with government and industry, write reports, and implement strategies to affect change. Indeed, the initial process of coming up “through the ranks” was never successful at ensuring that all communities affected by HIV could participate in the work. 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.

There is an urgent need to create a more formal infrastructure to teach, train and promote a diverse group of activists to engage in the research and drug development process. Otherwise, we risk losing the gains we have made in the goal of creating a permanent voice for patients in the research and drug development process. There are some good attempts to do this: the National Institute for Allergy and Infectious Disease (NIAID) Community Constituency Groups have helped to serve this function; and the African American HIV Policy Institute has developed an ambitious treatment advocacy training program. Most recently, the formation of the AIDS Treatment Advocacy Coalition (ATAC) promises to provide an excellent training ground for new advocates as well as an infrastructure for greater inclusion.

In the 1980s and ’90s, people with AIDS created a new role for patients in the research and drug development process. Our argument was always that including people living with HIV in this process would not only better meet our needs as consumers, it would make for better science. I believe that argument has been proven true over and over again. In order to continue that effort, we cannot rely on chance volunteerism. We have to provide education, training, financial support, and infrastructure. The importance of our work deserves that.

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