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AIDS activist Mark Harrington. Photograph by Kaija Berzins |
Mark Harrington '81 ('83) could be the first MacArthur Foundation Fellow to have earned a "genius grant" doing something that may have saved his own life. The five-year, "no strings attached" award last June recognized his work as an AIDS activist and as policy director for the New York City-based Treatment Action Group (TAG), in particular for having "advanced our knowledge of AIDS treatments" and "inspired new understandings of the roles that ordinary citizens can play in facilitating scientific work."
Harrington was raised amid the turbulence of San Francisco in the '60s and '70s. Elementary-school field trips included a visit to the People's Park at UC-Berkeley in 1968. His father, Richard Harrington '51, LL.B. '53, defended draft resisters, taking one case all the way to the Supreme Court when the younger Harrington was nine (it was ruled moot). Mark was definitely on track toward activist policy studies or public advocacy law when he arrived at Harvard in the fall of 1977.
"But then I got there and it rapidly became apparent that that wasn't what I wanted to do," he says. The major reason was what he calls "the gay thing." In the fall of 1978, the sophomore history and literature concentrator decided to tell his parents and friends he was gay. "It can't be emphasized enough how hostile Harvard was to gays in those days," he says. As far as he could tell, if you were gay, your entrée to the professional world evaporated. So instead of continuing preparations for law school, Harrington decided in the spring of 1979 to leave Harvard. After that, he says, "I never made any plans. I was not on a careerist track."
At first he returned to San Francisco's more tolerant arms, getting involved with punk music and culture before leaving for a six-month stint in Europe. In 1981, he returned to Harvard, this time as a visual and environmental studies concentrator living deep in Somerville. After graduating, he spent three years in Cambridge working at The Coffee Connection while writing and experimenting with different artistic techniques.
Then, in 1988, everything changed again. Harrington had been living in New York for two years when a friend of his developed symptoms diagnosed as resulting from HIV infection. Scott Johnson was 28, uninsured, underemployed, and facing down a disease for which there was only one treatment, priced at more than $10,000 per year. The cultural ferment of downtown New York--then the epicenter of the American AIDS epidemic--had given rise to ACT UP, the AIDS Coalition to Unleash Power, and Harrington joined the group soon after Johnson's diagnosis.
Art in the service of activism, a postcard he designed to benefit ACT UP. |
"Suddenly," he says, "all of that stuff--punk rage, street interventions, social change, life and death, artwork for a social purpose--found its place." Within six months of joining ACT UP, he had written an educational glossary for the group and become one of its leading figures. Between 1988 and 1989, he says, "I became a different person." He became deeply involved in planning an October 1988 action at the Rockville, Maryland, offices of the Food and Drug Administration (FDA). When demonstrators waved placards that declared, "The government has blood on its hands, one AIDS death every half hour" above the image of a bloody handprint, it was Harrington's hand on the signs.
And it was Harrington's hand, too, that guided a substantial body of the detailed, behind-the-scenes work of the organization. In the next few years, Harrington and others from ACT UP's Treatment+Data Committee proposed both the parallel-track preapproval access system (for distributing experimental medications before final FDA approval) and the FDA accelerated-approval regulations for some AIDS drugs. By November 1990, a group of statisticians responded thoughtfully, point by point, in the New England Journal of Medicine, to an ACT UP critique of traditional clinical research designs. An accompanying editorial entitled "You Can Teach an Old Dog New Tricks: How AIDS Trials Are Pioneering New Strategies" predicted that the new level of rapport between activist patients and their doctors would become "the standard of care for patients with all types of serious or fatal disease."
Despite winning significant battles over the drug research and approval process, activists were still losing the war, and Harrington learned that he, too, might join the casualty list when he and his lover, Jay Funk, tested HIV positive in 1990. From then on, his goal was to keep Jay alive, because, he thought, "as long as Jay's alive, I'm not going to progress." It was a kind of "magical thinking."
In 1992, Harrington became a founding member of the Treatment Action Group, formed by ACT UPpers who wanted to pioneer a "new model" for AIDS advocacy. He and fellow TAG member Gregg Gonsalves produced a report, AIDS Research at the NIH: A Critical Review, which led to a successful legislative campaign to completely restructure the NIH Office of AIDS Research, and to lasting collaborations among AIDS activists, members of Congress, scientists, and community groups across the country.
Harrington didn't bother to attend the bill-signing in the White House Rose Garden in the summer of 1993. Instead, he was at the International Conference on AIDS in Berlin, learning that early intervention with AZT did not prolong life. Over the next year "there was this horrible sense of waiting," Harrington recalls. "Then Jay died." Harrington kept on "doing the work on autopilot, just waiting for the next person to die." He worked to increase funding for basic research into HIV pathogenesis, hoping that future generations would benefit, even if he couldn't. Now, jokingly, he calls that time B.V.--"Before Vancouver"--where, at the 1996 International AIDS Conference, David Ho, M.D. '78, announced that new drug combinations had been able to drive the virus to undetectable levels in people with HIV. "People didn't gasp. It was just completely silent," says Harrington. "I got tears in my eyes because Gregg [Gonsalves] was in that study. Some of us were going to be OK after all."
There are now 11 drugs approved to treat HIV, and five more strong candidates in the pipeline. Harrington recently sat on the U.S. Public Health Service panel that wrote the new standard-of-care guidelines for using these medications--one of more than 25 research and advisory committees he has worked with. Because the new medications delay disease progression, but don't stop it, Harrington's work is by no means done. In the future, he also hopes to play more of a mentor role to new activists and to help "link activists in the U.S. and the developing world." Just as important, he says, will be strengthening alliances with other interest groups, like the National Organization for Rare Diseases and breast-cancer activists, to increase biomedical research funding across the board.
And the MacArthur grant? "I've been reading investment portfolios," Harrington admits, engaging in some well-deserved long-term planning for "retirement--or disability." He'll continue his AIDS work, and hopes soon to put the finishing touches on the book he's written on the first 10 years of AIDS activism. He's made lots of modest short-term plans about what to do with his grant, like getting some new bookshelves, but none of it's happened yet, he admits: "I'm too busy."