A Genius for Activism

Winning the MacArthur Award hasn't changed anything in my daily life," says Mark Harrington, the 37-year-old co-founder and policy director of the Treatment Action Group (TAG) in New York City. The MacArthur Foundation gave one of its $246,000 "genius" grants for outstanding creativity (a stipend payable over five years with no strings attached) to Harrington and his group for advancing knowledge about AIDS treatment. Founded in 1992, TAG functions as a watchdog over AIDS research. It monitors what the government, drug companies, and medical researchers are up to.Harrington's office is the living room of his apartment in New York City's East Village. "It creates a little bit of tension when you want to come home and just relax, and your fax goes off," says Harrington. "There's no separation between home and work; sometimes you wish there was. My apartment is not that different from what it was ten years ago when I wasn't doing this type of work. It hasn't grown up as much as I have."Harrington got his start as an AIDS activist with ACT UP in 1988. "Some friends were beginning to get sick -- people were dying -- and I really didn't know what to do to help them," he says. His academic background was not in science. As an undergrad at Harvard, his main interests were critical theory and literary history. "I was excited by Foucault and some of the German thinkers from the Frankfurt School. I immersed myself in reading texts about social change and the dynamics of power. When I started with ACT UP, a strong subtext for me was applying some of those lessons."ACT UP showed him how effective a little agitation could be. One recurrent side effect of AIDS was eye infection. A drug to treat this infection had already been tested but was not yet available. ACT UP did some demonstrations, and the government approved the drug far ahead of schedule. This helped save people's eyesight. A few months later, ACT UP pressured the government to get out a drug called DDI for about 15,000 people. At the time, DDI was an alternative to ADT, the only approved drug for the AIDS virus. Again the government gave in, and this helped prolong people's lives.These early activist experiences opened Harrington's eyes. He had discovered his calling. Then in 1992, along with a group of friends from ACT UP, Harrington founded the Treatment Action Group. It split off from ACT UP because of continual infighting about how best to approach the research world."There were certain people who just wanted to go back to marching in the streets and demonstrations," says Harrington. "We felt it was more effective to be working within the research system. We had had demonstrations to get inside the system, and we wanted to use that as an opportunity to speed up research. We felt it was time to have an organization devoted full-time to research and treatment advocacy. A lot of the early leadership of ACT UP had died or had left the movement or had gotten burnt out. We didn't want to get burnt out by the infighting."Harrington gives ACT UP a lot of credit. "ACT UP was a great success in bringing AIDS to national attention and making it a major issue on the national agenda," he says. "It forced major changes by the media in two areas: One was in how they handled AIDS and people with AIDS, and the other was in how they handled gay people. Also ACT UP changed the way the medical establishment looked at research, at least with AIDS."To Harrington, the splintering of ACT UP was not evidence of the group's failure; it was just part of the natural lifespan of an activist organization. "If you look at the sixties, a lot of organizations that made a major impact didn't have a very long shelf-life," he says. "People broke up and moved on to other groups or other forms of advocacy."Harrington places TAG's work within the tradition of social change. "There have been a lot of movements in American history for social change around racism, sexism, or homophobia which use the civil-rights model," he says. "TAG adapted that model for a target that wasn't just human ignorance or human oppression but a disease that was killing people at a high rate."TAG persuades government institutions to do much-needed research. This kind of activism, says Harrington, is different from traditional activism -- for instance, taking on the Pentagon during the Vietnam War. Then the government was the enemy, he says. Now the government is a partner. "We started in a similar way with civil disobedience and demonstrations, but we ended up forming partnerships between activists and researchers, which turned out to be both enduring and very useful," he says.But the government is not always a willing partner. "We've shown that government programs can be substantially improved and made much more responsive," says Harrington. "The key is a democratization of research." On the one hand, people need a greater understanding of the research, he says. On the other hand, researchers need a greater understanding of the needs of the constituency on whose behalf the research is being carried out.Demystifying science is one of Harrington's major goals. "There's a lot of fear of scientific jargon, and it turns out to be not very difficult to learn the basics of what it's all about -- and to educate and mobilize communities to transform flawed policies," he says. "Previously, science and research had not been seen as areas where political activity could make a useful contribution. What AIDS activism as a whole has clearly shown is that's not true."TAG's strategy is becoming a model. Breast-cancer activists, for instance, seem to have taken a leaf from TAG's organizing manual, agitating both on the inside and on the outside.The recent breakthrough in treating HIV with a combination of drugs using protease inhibitors has been highly effective in slowing the progress of HIV infection in some patients. For the first time since 1981, the death rate from AIDS in this country has gone down. But corresponding to this breakthrough is an increase in unsafe sex among some gay males."We need to continually retool the prevention messages because people get burnt out on the old messages, and also the situation changes," says Harrington. "Prevention is very different now with protease inhibitors than it was before. People's attitudes toward the epidemic are different."But he does not join such gay leaders as Larry Kramer and Andrew Sullivan in their calls for monogamy. "I don't think people should get scared into gay marriage because they fear the virus. There might be a lot of other reasons for gay marriage, but that's not a very good one," says Harrington, who believes in preserving sexual freedom. "Gay men invented and disseminated safer sex. On a public-health level, it's been one of the most successful and dramatic behavioral changes ever accomplished. So the fact that there are still individual failures has to be placed within the larger context."Still, the perception that AIDS has been conquered can be lethal, Harrington acknowledges. And the protease inhibitors have begun to fail in many of the patients they once appeared to be saving. "What's important is to let people know that the work is still very much with us," he says. "Earlier in the year there was a dangerous sense that AIDS was a manageable problem, and we were out of the woods. The truth is we have a lot more work before we finish."Some of that work needs to happen at the federal level, Harrington says. While giving the Clinton Administration fair marks overall on AIDS treatment and research, he points out some serious concerns."The most glaring failure is the refusal to have a national program for needle exchange," he says. "The best scientific studies offer proof that needle exchange is a very effective way to reduce the spread of HIV among users of injected drugs. However, the Administration has refused to lift the ban on the use of federal funding for programs that provide clean needles. Obviously, needle exchange saves lives."Harrington also denounces the Administration's opposition to initiatives in California and Arizona to legalize the medical use of marijuana by people with AIDS and other chronic diseases. "Many, many studies have concluded that marijuana does have a significant use in medical treatment for people with appetite loss, weight loss and wasting, chronic pain, and many other manifestations of AIDS," Harrington says. "Clinton has allowed demagogic Ôwar on drugs' rhetoric to obscure vital public-health issues."In 1990, Harrington discovered he was HIV-positive. "I learned I couldn't just spend my whole life being an activist," he says. "I had to step back and take some time to work on my friendships and other things that matter. To try to have an inner life that has things in it -- for example, reading and music -- that have nothing to do with AIDS."But the battle against AIDS still commands his attention. Today, Harrington is beginning to focus his energy on the international dimensions of the AIDS epidemic. "We need to help activists at the global level figure out what we can do to share skills," he says. "I'd like to use some of my MacArthur money to seed new creative projects in that area."Harrington draws hope from the breakthroughs in the last year in AIDS treatment. "The fact that two years ago I had a lot of friends who were teetering on the brink of getting quite sick and almost all of them are healthy -- that's been an incredible motivation."His motto: "committed, hardworking activists can definitely make a difference." Harrington's life is the proof.


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