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
Darlene: My name is Darlene Tucker, I’m 57-years-old, and welcome to Harlem U.S.A. I met my second husband, who introduced me to cocaine. I was 29-years-old. All that got me was this. [Shows track marks on arms.] It was a bad time in my life. My second husband is the one that infected me and never told me. I was told when Roosevelt Hospital called me and told me that he was in there and it was an ugly situation. We were divorced and I had gotten married again and now I get this news. I was pregnant. I was furious. After the birth of my son, at three months he developed a fever and they told me that he had the virus. His stay at the hospital was horrible. Me and my husband had to stay in there. We were sleeping on the floor because the nurses wouldn't feed him. They wouldn't even go in the room. People were just treated terribly.
Dr. Gordon: HIV is really the medical challenge of our time. In many ways it cuts right at the issues which many people find most compelling about providing care, which is the impact of the lack of resources and sometimes a lack of social equity that leads to disproportionate burden of illnesses, so oftentimes communicable illnesses like HIV, on the world’s poorest and disenfranchised populations. It may be that we continue to be on the cusp of just remarkable scientific breakthroughs, but we’re not there yet.
Darlene: I was brought in by the ambulance. Doctor Gordon is a great doctor; I wouldn’t trade him for anything. Some doctors have a way of talking down to you, he never did that. Your self-esteem is shot anyway. You’re a recovering addict or alcoholic and you’re trying to recover. You slip up, you know, you relapse. It’s a part of recovery. Once I started getting my care here and I had a doctor that I could really talked to, that answered my questions. And when he talked to me about certain things it made me want to know more. I think people should be educated and Ryan White, they have been instrumental in that, especially with women of color.
Dr Gordon: One of the most amazing recollections I have of these early days when I got to know Darlene, acting as the attending on service, was coming to her room, after she had moved from the ICU to the general medical floor, and while she was bed-bound and probably 80 pounds and barely able to lift her arm, she had her young soon coming every night to the hospital to sit at her bedside so that she could stay on top of his homework assignments.
Darlene: We have the special needs clinic here, which was great. Dr. Gordon sent me.
Dr. Gordon: The special needs clinic is a really remarkable mental health clinic that really focuses on the needs of the entire family. Those kinds of services, I think, helped keep your family together during that period of time and without Ryan White funding I don’t know where we would have marshaled those resources. If a person has an untreated mental health disorder or chemical dependency issues, or has access problems or transportation issues or housing challenges or no access to a stable supply of food, each of these things, either individually or collectively, can result in them not being able to access the services which are available to be utilized. When we talk about these programs that support not just direct medical care, but housing and access to care coordination, they’re just as critical as the antiretrovirals.
Darlene: I don’t believe that if these programs didn’t exist that we would have the quality of life that we have, or that any of us would be living this long.
Dr. Gordon: I think that one of the things HRSA, through the Ryan White CARE Program, has really identified early on was that the barriers to engagement in care that exist for many vulnerable populations and need to be overcome. She received mental health services from a clinic here, in our medical center, that receives Part D resources. Similarly, the treatment adherence program that she was in, when she first sort of acquired the ability to take her medications in a reliable fashion, was funded from Part B dollars. So, she’s an example, I think, of a person who had incredible internal drive and ability to change a pattern which was life-long, and to pursue a healthier life. But it was really made possible by the programs that were supported by the Ryan White CARE Act.
We applied for a HRSA SPNS grant in 2007 built around the notion of something called a “continuity of care record”: a standard snapshot of very critical demographic and clinical and care coordination information. One of the things that certainly contributes to the fractionation of care and discoordination of care is these silos of clinical information that exist in different care sites and social service agencies. So we asked the question of whether or not we could put that power in the hands of consumers. What we found was that people were eager to be trained and, many times, for some individuals it was the first time they had ever sat down at a computer terminal and opened up a browser, and were quite liberated, not just by learning how to access their medical record, but how to take that access and use it to promote a sort of self-efficacy and understanding chronic illnesses they had been diagnosed with or medications. The SPNS grant that was made possible by HRSA, I think we demonstrate, really for the first time, that vulnerable populations with marginal health literacy will adopt a personal health record at rates similar to more affluent, more educated populations.
Darlene: If I get my nursing license—I’m going to say when I get my nursing license—I’m going to work with young people in HIV. Especially the girls, because they believe the good old “okey doke” the boys tell them about why they don’t need condoms. They can give you 50 reasons why the shouldn’t use them, but can’t come up with one good reason why they should. I decided I was going to educate myself on the virus. I went to several programs. I went and got certificates. I graduated from ARRIVE. I went to SMART, which is for women that are positive, and we had nutrition, computer classes, Fridays we had medical.
Dr Gordon: So as you can tell, as Darlene tells the story on the courses that she took, it has changed the way you [Darlene] and I talk about any of your health issues. You’ve become incredibly sophisticated in your understanding of how all the pieces have to fit together, and the side effects and the challenges. When you come in and tell me something, I listen, because I know you know your stuff. And when you came and told me that you wanted to go back to school and do nursing, I think you’ll do it. I think you’ll do it. It’s a great goal.
Darlene: My family is very important to me because I don’t ever want them to feel the alienation that I felt from my own family. And I don’t want them to alienate from one another. For my granddaughters I don’t want to leave that example. I don’t want them to say “Grandma was a bum,” you know. I’m sorry that my daughters saw it, but really for my grandchildren I want better. This time I’m not going to stop. I know if I keep coming here, I won’t.