Its members aren't acting up in the same ways as they used to, but ACT UP/Boston still exists -- as 38-year-old Ray Schmidt can attest. Although the group decided in January 1995 to stop holding its general meetings, it has continued its IV League needle-exchange group and its Treatment Issues Working Group. The latter assists in writing clinical trial reviews to make sure that AIDS patients who consider enrolling in a clinical trial understand the terms -- for example, the possibility that they will receive a placebo or an existing treatment instead of the drug being studied.
He demanded an end to the 'death trials'
To Schmidt, who works in the MIT library system and is one of the local chapter's co-founders, the shrinking of ACT UP's focus has been disappointing.
One in Ten: Why do you think there's less energy?
Ray Schmidt: It had been slowly happening for a long, long time. I think it's tempting to look at the election of Clinton as something that defused the energy, but I don't think that's really the main thing, at least in terms of ACT UP. A number of things were already tearing away at the group. We lost so many people [to AIDS]. There were a lot of people fighting for their health, and it takes a lot of energy to do that. It just got harder and harder as time went on. Besides that, I would say there was never an overwhelming amount of support from the gay community. I think it just became something that people weren't interested in. Either they assumed it was being taken care of, or it just wasn't fashionable like it once was. I also have to point to a lack of coverage in the gay press, at least locally.
OIT: What moved you to help form ACT UP?
RS: My partner Stephen [Skuce] had a friend in New York who was talking about ACT UP there, and talking about the availability or just the existence of other drugs. At the time, it was "Here's your AZT," and that was it. And then going to the March on Washington in '87 pretty much made me and Stephen decide we wanted to do something like that in Boston.
OIT: What were some of the demonstrations you are most proud of?
RS: Our first die-in at Mass General was on the issue of a PCP prophylactic. Getting John Hancock to pay for that treatment required a series of demonstrations. The clincher was when we demonstrated at a benefit screening they had for the AIDS Action Committee. John Hancock was doing it to sort of take some pressure off, and we booted it up instead. That would have been in January of 1989. That's when they finally cracked. They agreed to pay for it, and that was a national policy; that made a big difference.
OIT: What do you think some of the most significant developments in the epidemic have been?
RS: A very recent one is the acceptance of viral load tests as a prognostic tool. It's important for two reasons. One is that it helps individuals make treatment decisions. The other reason is that we can finally stop the death trials that required people to be randomized until they got sick or died, to prove that one drug was better than the other. With these tests, you can demonstrate before people get sick whether the viral load is being reduced or not.
OIT: How about stumbling blocks?
RS: I think people have a need to think that researchers are working around the clock to find a cure. That's what gives them hope. But what gives me hope is finding ways we can do it better. That entails questioning the traditional routes. Especially in the Boston area, with Harvard Medical School and everything, people can be really entrenched in the way they do research. Trying out alternatives is a hard thing to get done. Related to that is community-based research. It's something we should be fighting for -- and ACT UP early on did fight for just such a concept -- but unfortunately, what we've ended up with is research that is not visibly different from what was already happening. It's mostly drug company-driven. CRI (Community Research Initiative) and Fenway get their funding mostly from drug companies, so they depend on drug companies to tell them what to do.
OIT: What victories have there been?
RS: Besides the viral load testing, I think it was a key thing to have parallel-track regulations implemented, and accelerated approval regulations that gave drug companies a more codified way to distribute drugs early on. There's a lot of optimism right now about the new batch of drugs, the protease inhibitors, which work really well for a lot of people. But a lot of people have been using antivirals for years, and they need a bigger kick than what they can get from that. We need the next batch now, and there is a next batch. We needed protease -- and could've had it -- three years before it became available.
OIT: How has AIDS personally affected you?
RS: I can't really do justice to that question. The loss is intense. But I've seen some incredible heroism -- and I've also learned things I would really rather not know about people I had assumed were on our side. I've been really disappointed. I don't feel proud of the gay community. I think differently about research and service organizations and the Department of Public Health. Everyone who you sort of assume is taking care of people has been disappointing. That part is harder to take than you might think. I don't think of myself as a real cynical person, but it's certainly been one of the things that has made it hardest to keep going. The first placebo trial the CRI ran just blew me away.
OIT: Do you have an idea what you might see five years down the road when you look at AIDS?
RS: There's a lot of optimism right now in terms of the treatment. I think I was feeling optimistic when a lot of people weren't, a few years ago. But I think we're going to see that swing back and forth a whole lot over the next few years. The drugs are working really well for a lot of people right now, but obviously we have further to go, and people are going to start finding that out. But at the same time, we're getting there. I think there's sort of a battle between people who are feeling hopeful and those who aren't. The weird thing is that there are a lot of people who aren't hopeful yet. They are reluctant to change.
P R O F I L E S, Boston-area AIDS activists: Larry Kessler | Max Essex | Denise McWilliams |
Matt Florence | Ray Schmidt | Ken Mayer | Barbara Gomes-Beach | Brian Rosenberg
T I M E L I N E, 1981 - 1985 | 1986 - 1989 | 1990 - 1996 | The N A M E S | AIDS L I N K S