AIDS activists using a gentler approach

The image of AIDS activists is one of angry, in-your-face street protesters shouting from the perimeter of the scientific establishment for immediate action -- and using nearly any means to get it.

But as the epidemic grinds on, shifts in method and attitude are taking place among members of the advocacy movement for victims of acquired immune deficiency syndrome.


Now, many longtime activists sit beside members of the medical and scientific establishment on panels and committees. And, in sharp contrast to their urgent demands of the 1980s, they often preach caution.

For example, several activists recently helped persuade federal officials to postpone large-scale clinical trials of two AIDS vaccines. More research on the mechanisms of prevention is needed before the new trials are funded, the activists said.


Other AIDS advocates are beginning to question a 1986 Food and Drug Administration regulation that streamlined the approval process byallowing some large-scale clinical trials to be conducted after a new drug is on the market.

The object of the regulation, which activists fought to put in place, is to give patients faster access to new drugs. Instead, activists now worry that a drug can be made available quickly, but the incentive to continue aggressive research on it has been lessened.

"The concern is that we'll get a bunch of marginally effective drugs with really no one understanding what they do," says Garey Lambert of AIDS Action Baltimore.

"I think we contributed in that sense to the uncertainty that surrounds AIDS treatments. We have to take responsibility for that part of it," says Linda Dee of AIDS Action Baltimore, who sits on the executive committee of the AIDS Clinical Trial Group, which plays a key role nationally in AIDS drug research.

Yesterday, the Food and Drug Administration approved distribution under this regulation of stavudine, the fourth anti-viral drug used to combat HIV, the virus that causes AIDS. The drug is made by Bristol-Myers Squibb Co.

Stavudine, or d4T, and the other three drugs -- AZT, ddI and ddC -- slow reproduction of the virus by blocking the action of an enzyme. D4T was approved for adults with advanced HIV infections who no longer respond to the other anti-virals, or are intolerant of them.

In compliance with FDA regulations, Bristol-Myers Squibb Co. plans to finish a continuing d4T study, which is expected to provide evidence that the drug either extends the lives of AIDS patients or delays the onset of AIDS symptoms, says Dr. Nicholas Hellmann, director of anti-viral clinical research for the company.

Optimum dosage studied


Other scheduled studies include investigations of optimum dosage and effectiveness in minority populations.

Many activists say that the AIDS movement has matured in ways that ultimately will help patients. Its members have graduated from fighting for their cause in the streets to working for it in offices. For the most part, they've progressed from taking over government buildings to building coalitions.

And some members of the AIDS community now cast votes on decisions concerning research funding -- votes equal to those BTC cast by politicians, scientists and doctors.

The footholds gained within the research establishment enable activists to use more sophisticated tactics.

"Then, we were standing outside and screaming. Once we were on the inside and we could sit down at the table, we could change the way we did things," says Lee Hardy, a former member of ACT UP and founder of Baltimore's AIDS Research Information Center.

In part, the movement is responding to the changing demographics ofthe epidemic itself, points out Dan Bross, executive director of the Washington-based AIDS Action Council, which lobbies on behalf of 1,100 local organizations nationwide. As the epidemic evolves, so do its politics.


"Thirteen years ago, AIDS was viewed as a health crisis [only] in the gay community. That's no longer true," he says. "The issue cuts across American society, and therefore the reality for many more people is that it is not a simple disease in one segment of the population."

Base of support widens

Subsequently, though the disease already has taken a devastating toll among the leaders of the movement, its base of support is widening.

"A new generation of activists is coming in, and new communities are getting involved -- women, Hispanic and African-American groups," Mr. Bross says. "But again, a lot of the early leaders have died or just burned out."

Years of disappointments -- as one by one, treatments fell short of their promise -- have caused battle fatigue among the community, says Ms. Dee, who is an attorney.

And, she points outs, the passage of time has lent both clarity and complexity to the cause. "People like me have been in this for years, and we have learned unfortunate lessons. Where we once cried 'access, access, access' [to new AIDS treatments], we now say, 'Wait a minute, what's going on here? Who's doing what to whom? What is the real story?' "


AIDS activists are more savvy now than in the early stages of the movement, says Martin Delaney, founding director of Project Inform, a California-based organization that provides information to AIDS patients about treatment.

"We are privy to more information than we were in the past," he says. "In the early days, we were more likely to think there were all these drugs and the FDA was sitting on them. Now we realize the drugs aren't very good, and the information on them is meager."

The flip side of increased knowledge is that activists are more aware of how difficult AIDS research is. Decisions that once seemed black andwhite now seem mired in cloudy gray.

"It's one thing to stand on the edge and scream for progress, and it's another to be a part of the system and see all the problems and concerns," says Mr. Lambert of AIDS Action Baltimore.

Now "we're the ones sitting at the table voting yes or no: Whether this stuff should go into the bodies of people. And suddenly the responsibility is yours -- you can't just scream, 'Go, go, go.' "

Some object to shift


Some longtime activists, however, express concern that the shifts they see in the movement have softened the hard-nosed approaches of the 1980s and may hinder the cause.

"We are looking at the phenomenon of outsiders becoming insiders," says John Stuban, a founding member of ACT UP Baltimore.

"The advantage of being on the inside is you may have the immediate ear of the authorities. But once you are on the inside, you may work to stay there, and that's not necessarily what's best for the cause."

No matter what changes have taken place in the movement itself, its final goal has not changed, says Mr. Delaney of Project ,, Inform.

"Our insider status shouldn't turn us into a bunch of AIDS bureaucrats trying to decide for others what's good for them. To me this whole thing has always been about personal choice and freedom," he says. "The interests of people who are sick and dying have not changed."