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
Tim Westmoreland: Transcript for “An Interest in Health Care to a Health Care Hearing”
My father was a chaplain in a tuberculosis sanitarium when I was a child, and my mother was a lab technician at the same tuberculosis sanitarium. I used to eat Sunday lunch in a TB hospital cafeteria, and it was at that point that I was convinced that health, especially health for low income people, really, really, really matters. So I went off to law school saying I was interested in law and health care, and I was particularly interested in law and access to health care for low income people. I started working for the subcommittee on health and the environment in the house, in 1979.
By 1981, when the first reported cases of Pneumocystis pneumonia [PCP] were published, I heard about it from the people at the Centers for Disease Control [and Prevention (CDC)] saying you should know something about this. And I put together the first hearing on what became to be known as AIDS and HIV in 1982, in April of 1982, when there were, I think, two hundred cases and a hundred deaths. So, the hearings that we did, I think probably during that time from 1982 to 1994, I think probably we did 35 hearings during that time on AIDS issues. Everything from prevention research, to Medicaid, to who was going to pay for the prescription drug costs and ultimately led, in 1990, to the legislation that is the Ryan White [Comprehensive AIDS Resources Emergency (CARE)] Act.
Throughout the eighties, there was a roller coaster between panic that the epidemic was going to be casually transmitted in everyone, I mean there was a cover article in Life Magazine that says “Now we are all at risk for AIDS,” and complacency. Everyone was always … everyone who was working on this issue was always anxious that we make the right decisions, and it wasn’t always obvious what the right decisions were. The questions about how to handle the epidemic should not be debated as regular politics. They should be answered by public health and research officials. And they shouldn’t be dealt with within the same realm as traditional budgets of balancing priorities, they should be with in the way that the public health and research officials suggest.
So it was a, um, a tacit alliance between a influential political figure and a cadre of public health people that we would try to respond to public health first and put the politics to the side. The major activity of the congress, up until the enactment of the Ryan White Act, was to try to demonstrate that more funding was needed for both CDC and [the National Institutes of Health] NIH, and to some extent for [the Food and Drug Administration] FDA. And it meant that we could put together Congressional hearings to question people at how they arrived at their budgets, and ask the question of whether the scientists and the public health officials had asked for this money, had asked for substantially more, and bring on to a public record that the scientists and public health people were actually saying this epidemic is going to be much worse than we are publicly saying, and this epidemic needs a lot of resources which we are not able to publicly ask for.
Lord knows we owe a great debt to people like C. Everett Koop and Ed Brandt, who were political appointees but then went on to serve in a very courageous way to highlight how important the epidemic was coming to be. Passing the authorization was one long marathon. I believe it’s the only time in my life that I’ve pulled two sequential all-nighters. When it finally passed, it was both a delight, ecstasy, but also a pure physical collapse for me. I mean I went home and slept for 48 hours. It felt like a delirium at the time.
So we didn’t know about the funding level until after the August recess, when the appropriations process started. And we knew that we were very late in the game, because the appropriations are supposed to be passed by the end of September, and we didn’t get this passed, as an authorization, until the end of August. I don’t think anyone was shocked that it was significantly under appropriated in the first year. The activists had to have been as deeply exhausted as we were, from the authorization fight and trying to get a simple majority of house and senate to agree to it, and for there to be no filibusters in the senate. So, it was disappointing, but not shocking.