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
Peter Gordon: Transcript for “The Changing Landscape of HIV”
It’s a different world now in caring for patients. Most patients who come to me, who are newly diagnosed, they’re obviously fearful, but you sit down with them and you put your hand on there shoulder and you say, “There’s every expectation that you’re gonna live a long and healthy life. And you’ll have many health challenges in your life, but come into care, come to see me. This will be one of those challenges, but I would offer the opinion that it’s unlikely to be the most serious.”
You know, it’s much more challenging in many ways to care for someone with advanced diabetes, or heart disease, or many other chronic illnesses. Many programs that have played a role in the fact that we can sit here and have this conversation and, um, the care programs that were knit together through Ryan White Act and through funding is a huge part of that, and continues to be.
There’s a perception that it’s a personal choice to be healthy or not be healthy with HIV. And so we’re at a challenging moment, because I think it’s less obvious to people why we need these broad programs for care. Because the semblance of having, or the understanding, that the drugs are available and are truly miraculous I think lead a lot of people to conclude that they alone should be sufficient. And this isn’t true for HIV, you know. It’s not true for diabetes. It’s not true for any complex chronic disease.
HIV care has, in many ways has, in this country, and certainly through Ryan White programs, and the programs that are supported by state and city dollars here in New York, a medical home model to care has, was really, you know you hear that term a lot, patients under medical home. And the HIV centers had really pioneered that approach in the last 20-25 years. And I think it’s only now that the rest of the care environment is catching up.
This is an opportunity I think for programs that have centered on the whole individual and all their needs, perhaps starting through the lens of HIV, but subsequently really broadening out. And I think we have an opportunity to kind of show the way, as the rest of the country begins to examine the medical home model, to realize that designated AIDS centers and HIV centers supported by Ryan White have been learning these lessons for 20 years.
It’s just such a remarkable thing about the response of the government and [the Health Resources and Services Administration] HRSA to HIV epidemic. I mean, it has been one of incredible innovation and flexibility and you know, you say this with some hesitancy, because there’s a long way to go. But I think the government and HRSA and everyone who’s participated in, you know, most critically the advocates and the patients and the providers who were here from the beginning, they should look around and take ample pride at was has been built to date and what has been accomplished. Because it is the other half of the drug discovery, and I’m tempted to say of equal importance. You know, well some people might take issue with that, and I think it’s clearly of equal importance. It’s a remarkable legacy and one that, you know, should continue.