The Bay Area Reporter - September 25, 1999
Jeff Getty, ACT UP, Golden Gate Writers Pool

Over the last decade, several coalitions of activists pulled together at various times to form working groups to address the problems in the drug industry. There was a protease working group, a 1592 and Amprenavir coalition, and a human growth hormone national working assembly among others. But by early 1998, it was clear that there needed to be an ongoing coalition of AIDS activists and AIDS agency employees functioning together on a national level to expedite the availability of combinations of compassionate use AIDS drugs. There needed to be a regular meeting group to address constant inadequacies in drug access and safety for those at immediate risk of death.

Linda Grinberg is one of the founders and a leader of the most effective AIDS treatment access coalition around today. She is the Los Angeles-based organizer, communicator, strategist, and whip behind much of the work that comes from some 20 or 30 national activists. The Coalition for Salvage Therapy (CST) is unique in that it has no official funding or tax exemption. The CST exists to find access mechanisms for PWAs who need at least two or more new drugs they have never used before -- two or more drugs coming into compassionate use programs at the same time. The task is nearly impossible. But the CST, whose members include co-founders Lynda Dee of AIDS Action Baltimore; Spenser Cox, of New York's TAG along with Carlton Hogan; AmFAR's Dave Gilden; Martin Delaney and Ben Cheng of Project Inform; Jules Levin of National AIDS Treatment Advocacy Project; HIVandHepatitis.Com's Ron Baker and many others who jump in from time to time, seems to be finding some solutions. "We have also had invaluable input from two HIV practitioners, who are also members of the coalition," said Grinberg.

How it started

The CST formalized around a consensus statement circulated in November 1998 by Cox to address problems with Abbott Pharmaceuticals' new protease, ABT-378. It was then that Grinberg, Dee, and Cox formed the coalition. "The work of the CST is just now the bearing fruit of our labors," said Grinberg. Grinberg mentioned that previous working groups had to keep reinventing themselves from the ground up. "We've needed an ongoing activist coalition, so that there is continuum, and our work is not piecemeal," she said. Grinberg pointed out that the coalition's politics are tough at times. "The CST tries to find real consensus in the group -- to agree on things in a democratic way. Everyone is welcome in our group," she added.

Dee has her feelings about consensus in the group, "The most difficult aspect of instituting the Coalition for Salvage Therapy has been working with members of the community. There has been so much water under the bridge over the past 10 years, past resentments and hurt feelings. It is often hard for us to dismiss the past and now trust each other. Fortunately, we really are all on the same team. The more we work together, the more trust among is established," she said.

The main focus of the group is to provide compassionate and expanded drug access to late stage AIDS patients who have run out of options. One of this year's accomplishments was the creation of the new Abbott Protease ABT-378 Compassionate Access Program. It is now currently enrolling up to 350 patients. Another recent coup was the brokerage of an agreement with Gilead Science to provide 300 patients with PMPA (a new nucleotide anti-HIV drug). The importance of this victory was that it might enable patients to get two new agents simultaneously. "The numbers of patients for the first phases of theses programs are small, but hopefully, our efforts will expedite a larger program next year," Dee said.

"I am pleased that we have been able to make a small step for patients who would not have been able to access these drugs until mid-2000, but clearly broader access is the main goal," added a modest Grinberg.

POZ was not pos

Though well received, the CST has been the center of some controversy. POZ magazine's Mike Barr wrote a negative column about the CST's work earlier this year. Barr admonished the CST as something akin to a "drug du jour club". Barr was critical of CST's rush to get ABT-378 into patients' hands. TAG's Cox responded, "The criticism only looked at the coalition's opening salvo, since then we have shown that we are fighting to fundamentally change the way manufacturers test new drugs. It's not about just one drug, it's about finding effective treatments for people whose standard therapies have stopped working."

A lot of the group's work focuses on the development of late stage AIDS protocols (salvage protocols). "One of the biggest obstacles has been the reluctance of drug companies to collaborate on studies utilizing experimental agents still in development," said Grinberg. She mentioned that healthier studies (drug studies for healthier patients) are usually chosen to utilize the very latest drugs in early development. Late stage patients are often left out. "We have been able to facilitate collaborations between these companies -- we are sort of playing matchmaker in a way, pressuring these companies to work together," she added.

Grinberg said the work is hard and has become a full-time job. While her health has been somewhat stable, she suffers from chronic AIDS symptoms and is often taxed by travel and meetings. People who work with Grinberg and the coalition are amazed at how much work gets done and how much energy people like Dee and Grinberg put in. "We worry about Linda's health a lot," said a close friend.

Why does she do it? "I don't feel like I have a free will, this is my destiny. I could never dream of walking away from this. Even if we can only prolong the life of one person, that to me is meaningful," Grinberg said. In such coalitions, egos and tempers flare. "We have managed to work through the bumps in the road," she said. It seems that both she and Dee have become very good at juggling the diverse personalities of the group.

The coalition has an e-mail address and can be contacted at CST@critpath.org. The group can also use small or large donations to help pay for numerous expensive conference calls. Many costs have been coming out of coalition members' pockets. People are encouraged to join the coalition and volunteer time. It seems likely that late stage AIDS patients who are anxiously awaiting new drugs could do a lot to help this group and themselves.

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