No longer feuding (much), top activists have united under the name AIDS Treatment Activists Coalition to fight for what you need. Meet the friends you didn’t know you had
“If you’re not in the in-crowd, you’re fucked,” says Houston HIVer Nelson Vergel. Diagnosed in 1988, Vergel spent years trying to break into closed-door meetings between elite AIDS activists and major pharmaceutical companies. It didn’t matter that the 45-year-old Venezuelan-born amateur bodybuilder had founded his own organization, the Program for Wellness Restoration, or coauthored a book, Built to Survive, both of which help people with HIV halt wasting through anabolic steroids and nutrition. It didn’t matter how many AIDS agencies around the country had asked Vergel to counsel their clients. “It was very lonely and frustrating,” he says.
Then, at an AIDS conference in 2001, HIVer Bob Munk, perhaps the most respected treatment activist in the Southwest, urged Vergel to join the fledgling AIDS Treatment Activists Coalition (ATAC), a group created by the very crowd Vergel hoped to join. Munk told Vergel that ATAC wanted to unify AIDS-treatment activism’s divergent warriors and open the field’s rarefied but dwindling ranks to newcomers. In April 2002, when Vergel showed up for an HIV forum at Houston’s Center for AIDS attended by some of ATAC’s founders, he was floored. “I looked around, saw all the big names and said, ‘I’m going to get really involved.’” Besides Munk, of the New Mexico agency AIDS InfoNet, Vergel saw New York City activist legends (and former lovers) Mark Harrington and Gregg Gonsalves. In the early 1990s, the pair had famously defected from ACT UP to form Treatment Action Group (TAG), which had the ear of Clinton-era federal AIDS honchos. Vergel also saw ATAC’s own Mama Rose, indomitable Baltimore lawyer Lynda Dee, whose husband’s 1987 AIDS death propelled her into activism. Alongside the TAG boys, she hammered out drug-trial design with big pharma and the Food and Drug Administration (FDA) for nearly a decade. Also present in Houston was Matt Sharp, a veteran of ACT UP/San Francisco who had survived 15 years of AIDS to become a treatment guru at Chicago’s Test Positive Aware Network.
Vergel dove in (he started by driving ATAC members all over his hometown). Eventually, he was elected to ATAC’s transitional steering committee, which created the group’s mission statement, membership policy and other bylaws. And over the next year, he hauled butt to help the group get incorporated and apply for nonprofit status. His hard work paid off: He now sits down with the pharma and FDA reps who’d once eluded him, flanked by his mentors on ATAC’s data-savvy Drug Development Committee (DDC). “This has been a blessing,” he says. “I didn’t need ATAC to survive, but I’m much more networked—and having more fun, that’s for sure.”
In this age of post–ACT UP, post-protease complacency, if any group is going to revive domestic treatment activism, it will likely be ATAC. Through a vibrant e-mail Listserv, regular conference calls, one paid staffer and a few key meetings a year, this barely 3-year-old network of some 150 registered members, at least half of them HIVers, has made its presence felt on the national scene. Previously, the FDA and major pharmaceutical companies would decide which activists would be invited to meetings—and what would be discussed. But now ATAC calls on pharma and the feds with its agenda items and demands, a clear and potentially powerful reversal of roles that has already yielded results.
Due largely to pressure from ATAC, in summer 2003 drugmaker Boehringer-Ingelheim doubled the number of slots in its expanded-access study of the experimental protease inhibitor tipranavir from 300 to 600, a boon for HIVers desperately in need of new treatment options. Later that summer, ATAC’s DDC urged several makers of the upcoming class of HIV meds called entry inhibitors to include treatment-experienced HIVers in their research. Since follow-up meetings in June 2004, ATAC believes the companies will comply. Last fall, the DDC met with FDA reps in part to demand that the agency require early data from drug trials on how new therapies interact with other HIV meds. Jeff Murray, who works in the FDA’s division of antivirals, acknowledges that ATAC provides the AIDS community with “a more unified front.”
ATAC isn’t making noise just behind closed doors. The group orchestrated the February 2004 Save ADAP event in Washington, DC, where nearly 100 HIVers and their advocates descended on lawmakers to demand more money for the impoverished free-meds program. And after drugmaker Abbott outraged the AIDS community by raising the price of its protease inhibitor Norvir by 400 percent, ATAC teamed with top HIV docs at February’s retrovirus conference in San Francisco to blast Abbott at a press conference—and sponsored a noisy protest outside Abbott’s Chicago-area headquarters.
Despite ATAC’s successes, it remains curiously unknown within the AIDS community. Asked what he thinks of the group, Michael Kink, the well-connected advocacy czar at New York City AIDS agency Housing Works, asks, “Who’s ATAC?” National Association of People With AIDS public-affairs poobah Paul Feldman concedes, “I don’t know very much about them,” while hastily scanning the group’s website for familiar names. Why is ATAC so little known? Most members say it’s because they’ve been around only three years and haven’t had time to concentrate on PR. Of the two dozen or so members who pull the most weight in the organization,most slip in their ATAC work during or outside their full-time jobs at various AIDS agencies. Another reason may be that, as Sharp says, “the people who want to do the work we do know about us already.”
Indeed, one reason ATAC has moved so swiftly is its impressive roster of veterans and rookies. The DDC, one of ATAC’s three working groups, boasts Munk, Dee, Sharp and Gay Men’s Health Crisis’ esteemed Treatment Issues editor Bob Huff, as well as second-generation stars Tracy Swan of TAG; HIVer Cathy Olufs of the Los Angeles ASO Being Alive; Melvin Littles of the PWA-serving Greyston Foundation in Yonkers, New York; and Precious Jackson of the LA AIDS agency Women Alive. ACT UP/New York alum Lei Chou and Project Inform boy wonder Ryan Clary head ATAC’s Save ADAP working group. Its third and newest working group, Access to Health Care for the Incarcerated, is powered by longtime prison/HIV advocate Julie Davids. As Olufs puts it, ATAC is “a who’s who of AIDS [activism].”
The idea for ATAC bloomed in the mid-’90s, when Harrington, Gonsalves and Dee began talking about consolidating activist clout under a national umbrella similar to the European AIDS Treatment Group (EATG), which unites activists across Europe. In August 2001, they and other activists met at Houston’s Center for AIDS, coined the name ATAC and, shortly thereafter, started a Yahoo! Listserv that soon became (and remains) a 24-7 forum for activist chatter, bickering, brainstorming and bitching about every new crumb of treatment or policy news. “It was a cyber clamor,” recalls HIVer Tom Gegeny, a staffer at Houston’s Center for AIDS who now heads ATAC’s steering committee. “But it was cool because if someone went to a [pharma] meeting, they would post a summary” available to all ATAC members. “Before, it was all up to the pharmcos as to who got to go,” he adds—and anyone who didn’t was left out of the data loop. In 2002, aiming to recruit new members and bring them up to speed on research and treatment, ATAC held two boisterous “teach-ins.” In January 2003, the group spent two grueling days hammering out its bylaws, electing a steering committee and putting its structure into place.
In three short years, ATAC has become, as Melvin Littles says, “a family thing.” Olufs—an energetic, fun-loving redhead quick to rock the mic when the group hits a karaoke bar—says “there’s a huge camaraderie” within the group, plus tremendous admiration among the group’s relative newbies for its PWA veterans, like the laid-back Sharp, who has found new stability on a combo powered by T-20 (Fuzeon) and tipranavir. “He’s been near death so many times,” says Olufs, “he just blows me away.”
But ATAC, like any family, has its feuds—particularly among three of its old-timers, one of whom is Dee. ATAC’s young’uns both revere and fear the diminutive Dee, who is as fiercely devoted to her ATAC brood as she is tart-tongued: Asked whether ATAC members could square away two hours amid recent meetings in Bethesda, Maryland, for a POZ photo shoot, she refused, cracking in her Baltimore twang, “You ain’t Vanity Fair!” The other two activists in question, Project Inform’s Martin Delaney and New York City HIVer Jules Levin, founder of the National AIDS Treatment Advocacy Project, are ATAC members in name, but both keep their distance from the group and openly critique it: “[Activists] used to just meet the night before [a pharma meeting] and hammer out our strategy,” says Delaney. “Now, there are endless conference calls. I’m not fond of what I think of as bureaucratic solutions.” Levin, who has hepatitis C, wishes “that the group would spend more time on hepatitis” because it afflicts so many HIVers, especially people of color. Although ATAC is launching a “liver issues” working group, Levin believes its scope is too narrow.
Dee, meanwhile, has little patience for Delaney or Levin’s critiques: “[Delaney]’s been to one meeting,” she says, “He’s never in on the calls. What does he even know about what we’re doing?” Since both Delaney and Levin have long had their own access to pharma, she believes that “their positions are threatened if a [drug] company rep can come to us [instead of them].” ATAC cofounder Gonsalves, now director of treatment and prevention advocacy at Gay Men’s Health Crisis in New York City, offers a milder assessment: “I love Marty and Jules, but they’ve always been lone wolves and don’t have much time for coalitions,” he says. “I think they’ll admit that when we sit down with a drug company, we’re at our best when we’re not contradicting each other.”
Delaney raises at least one question that gives ATACers pause. He wonders whether the group can fulfill its mission of mentoring new treatment activists, a process he says can be “slow and repetitious.” The junior set admits the learning curve can be steep—and daunting. “I felt like an outsider looking in,” says relative novice Gegeny of his first ATAC treatment powwows. “Someone would say, ‘We all know from 1994 that this [therapy] can kill people,’ and I would think, ‘Oh, we do?’ I had to play catch-up.” Olufs is taking a college biology course to do just that.
Bringing new members into the ATAC fold also brings up a diversity issue: For a group whose literature says its goals include embracing “treatment activists in all communities affected by the epidemic,” ATAC’s membership remains mostly male and pale. By its own records, of those members who volunteered demographic information, 68 percent were men and 68 percent were white. “I guess I feel kind of lonely,” says DDC’s Jackson, a black woman.
Most ATACers agree that in terms of diversifying its membership, the group is “trying, but we could be doing more,” as Swan puts it. Adds Gegeny, “We need an effective program that gets into [diverse] communities.” There is less agreement around the question of mentorship. ATAC’s old-schoolers say that through both teach-ins and sharing wisdom one-on-one, they’re up to the task. “Look at all the knowledge we have,” exclaims Dee. “Should we let it be wasted?” Olufs herself is chairing a new committee to ensure that “when somebody joins, they get a phone call, a human contact—somebody to be their buddy and show how things work.” And nobody says they want ATAC to be a private club: “We can always use more bodies and minds,” says Sharp.
Visit www.atac-usa.org to enlist in ATAC (most people are eligible except pharma employees) and learn of upcoming events in St. Louis, LA and DC. No Internet or e-mail? Call Kristen Lepore at 212.367.1237. But be warned: It’s tough to belong if you’re not online.
But there is also a feeling that ATAC, and especially its data-crazed DDC, isn’t for everyone (“We’re all nerds,” laughs Vergel) and a perhaps naive belief that those with a real hunger for activism will inevitably stumble upon ATAC. “Sometimes women and people of color stand back and say, ‘You people are excluding us,’” says Olufs. “No, excuse me—you need to get up and get involved. None of us have time to spoon-feed anybody, because there’s a lot of work to be done. We could all be warm and fuzzy, but in the meantime Bush is cutting all the funds.”
And speaking of money, there’s also the small matter of ATAC’s funding, most of which goes to travel, lodging and food expenses when the group meets in person, plus a salary for coordinator Kristen Lepore in New York City. She says virtually all of the quarter-million dollars that ATAC accepted in start-up funds last year is from pharma, both the big companies with AIDS drugs on the market and smaller outfits with promising pipelines. ATAC members say they want non-pharma funding but that their mission is a hard sell to philanthropies. “If we were amfAR that would be one thing, or if we provided health care,” says Gegeny, “but to say that we help pharma design clinical trials—that sometimes gets a little lost.” Nonetheless, members say they’re not afraid to bite the hand that feeds them if they have to—and point to ATAC’s recent attack on Abbott, despite the drugmaker’s $50,000 gift to the group in its first year. “If we were at our wit’s end and we’d tried the PC thing,” vows Olufs, “I would chain myself to somebody’s desk.”
Given that the heyday of such hard-core actions seems well behind us—and that many of yesterday’s best activists are either fighting global AIDS, doing pharma PR or deceased—ATAC’s plan to pass the treatment-activism torch to a diverse new generation of HIVers may help safeguard the future of Americans with HIV. Much is in the works, including a revamped website, another teach-in/recruitment opportunity likely tied to the annual North American AIDS Treatment Action Forum in St. Louis, Missouri, this December, plus more working groups—perhaps, says Gegeny, on immune-based therapies or microbicides. “We’re just growing and trying to work things out where we can be more proactive instead of reactive,” says Dee.
Meanwhile, as the scrappy group evolves, there’s lore to be shared and lessons to be learned. “We’ll be at dinner after a meeting, and someone will say, ‘I remember the day [ACT UP leader] Peter Staley got up and said such-and-such,’” says Gegeny, a teenager back when Staley was at ACT UP’s fore. “It’s fascinating to me.” Says Olufs, “Once, I was walking with Matt Sharp in San Francisco, and he pointed out where the old ACT UP office used to be—the history there….” She hesitates, struggling to express what ATAC means to her. “Everything that we have as people with HIV was fought for by people before us. And everything in the future needs to be fought for by us—right now.”