Ryan White Voices
Matthew McClain: Transcript for “Creating a Broader Network of Care”
You know our first award was 1.6 million dollars. And we thought it was, you know, I mean, I didn’t feel like it was enough. There was clearly more demand then we could meet. But going from zero, it seemed like, you know, “Over a million dollars, oh my god.” You know, and now our award is 24-25 million, something like that. It’s interesting how, how that first year felt, you know. How naïve we were, how new we all were at it.
You know it represented a lot of hope actually. It represented, I think, a turning point. Now we’re really going—it’s going to be a grown up response. It’s going to be a joint response. It’s going to be a private-public partnership response. The disease has been acknowledged finally. When you get money for it from the federal government, you know it’s—you know no one can pretend it’s not in town like a lot of people wanted to, right? And it went on a long time before the breakthrough.
Those were tough years, because there was a lot of dying going on. A lot of acting up that was needed, and a lot of—it was very frustrating. Our expectations of the scientists were—were—we didn’t know enough science to know how difficult there job is. So, but when the ’96 thing happened, it was so exciting because we had built our system. We were able to really go down that path of antiretroviral treatment really quickly. I mean, we turned directions really fast, everybody had to. And then it got fresh again, because it presented a whole new bunch of problems that we weren’t familiar with.
Except for AZT, I mean it wasn’t much of a medical story, it was an end of life story. And then ’96, you know, [antiretrovirals] ARVs happened and it’s like oh you don’t have to die, uh huh. Very different way of thinking about what to do, and how to do it, and who to do it with, and how to reach people, and what they needed. So it’s like it started over again in a lot of ways.
A lot of new questions came up, it was really interesting. And also energizing because now finally we had some drugs to give to people. Even though, to this day, everybody who’s on antiretrovirals, I’d say, I’m not a doctor but it’s my feeling is, everybody’s in a great big global clinical trial. Because we don’t know the long term effects of these medications.