Ryan White Voices
Ryan White Voices: A Legacy of Care
Curtis: The Road From Here
Darlene: Lord Protect Me
José: Mucho Orgullo
Darlene: Moving Forward
Living With HIV: Positive Voices
The ACA and the Ryan White HIV/AIDS Program
Matthew McClain: Transcript for “AIDS and the Early Community Response”
Just being a gay man in the community, the epidemic was terrifying and people were sick and dying. So this was, you know, around me and it seemed there needed to be you know, something had to happen. We needed to do something, even though it was so frightening and mysterious, and you know, there were so many things we didn’t know. So, I volunteered.
I was like a lot of people, like this guy and many thousands and thousands of other people. I know nonprofits, because I was trained in art history and museum studies, so I knew nonprofit as type of thing, an entity. And I could write. And so I went to the executive director, and said, “I know, I’m sure you’re going to need help writing. I don’t know what, but if you need help, I’ll—ask me and I’ll [help].”
And the next day, she called me and said, “We have two applications we’re writing at the same time, can you come help? If you do one, I’ll do the other one.” ActionAIDS was part of this small group of organizations that were, each in their own way, responding to the epidemic in their communities. But you know, nobody had any money. There was no funding stream, nothing. This was all community response, you know, basically we were just peeling our friends up off the pavement and helping them to die. There was not a lot to offer.
Obviously case management, so the services were sort of in that side of things. We really weren’t thinking that much about medical care yet, because at that point our experience with the epidemic had been death. We were thinking about buddy services and case management services, and basic needs. And also things for families, because everyone [was] part of a family. I remember early meetings where guys from the hospitals were, you know, pounding on the table, like, “Well, these people are coming to our hospital and dying. So we should get money to care for them, because that’s expensive, and they’re not insured.”
And of course the community folks and the people with HIV were saying, “Well, no you’re a big rich hospital, you don’t need it. We’re the ones, you know, we have no insurance, we have very little income.”
And also there was a lack of best practice about how to prioritize and how to plan. The time between the first guidance and the first application was like a blink of an eye. It was a lot of heated meetings, like they were you know all over the country, because there was such pain. It was an interesting combination of a community that had been really, um, ignored for, we felt, too long, with no money.
And also, we were sort of making it up as we went, because HRSA was also brand new at this. Everybody in the country was making it up as we went, and the point was we had to keep coming together and talking and working it out, and having our fights, and going away, and trying again and then come back. And we kept doing that here I think.
There’s a culture that’s developed here, at least in the AIDS office and I think also among many of the providers, that we don’t sit back and say, well ok, we’ll just keep steady state. There’s a cultural bias here about [that says], “No there has to be more we can do better, because HIV is always ahead of us. And we’ve closed the gap, you know, we’re catching up a bit, but there’s always more to do.”
And so, the attitude here is, it’s all well and good whatever our performance is, but we can always improve. I like that we are always dissatisfied. Even as we do well and take pride in that, we’re always sort of like, yeah, but there’s more work to do.