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A Legacy of Care: Transcript

The 20-year history of the Ryan White HIV/AIDS Program is a journey of exceptional courage and hope. The narrators of this film are just a few of the many thousands who lived through it. These individuals have chosen to tell their stories anonymously, placing the emphasis on the story itself. A list of participants appears in the credits.

The Ryan White HIV/AIDS Program is administered by the U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau, with the goal of improving health care and support services for low-income and medically underserved people living with HIV/AIDS.

For more information, visit hab.hrsa.gov/livinghistory.

The 1980s: The Early Epidemic

“I think that there was a recognition early on with HIV, it was…it’s the great medical event of our time.”

“Within that first year, it became apparent something new was happening and we were of course, as it turned out, sort of at ground zero of the AIDS epidemic.”

“I think after the first six months, almost all our patients that we cared for died.”

“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.”

“The activism is what I think I remember most. The gay community—thank God for them—really stepped up. I just remember the, the acrimony, the you know, all the accusations that were being thrown out. I mean it was a really tumultuous time. But I do remember Ryan White, too. And he was this… a godsend, in a way, because he became this symbol that it’s about, you know, it’s about people.”

“Somehow I felt like everything was going to turn around. You know, I thought if this is so new, why can’t they be wrong? I told Doctor Kleiman I said, ‘I want all these tests run all over again.’ And he said, ‘Jeanne, Ryan has AIDS.’ There were so many people that made such a difference. But the people that really did all the work are the ones no longer mostly here.”

“I can remember the first time the quilt came to Washington, when I had just started working here in the Program and it was the service demos and it was on the Ellipse. It was small enough to be on the Ellipse.”

“I think 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.”

“I mean, I just remember having the mentality of, you know, this thing’s gotta happen. This Ryan White thing’s gotta get, gotta get done.”

1990: Passing the Ryan White CARE Act

“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, and the role back and forth for us was get the politics out of the way and tell us what, tell us what you need.”

“Senator Hatch called me and Senator Hatch said, you know, ‘We have 23 senators lined up for you. We want you to come to D.C. and tell these senators what it was like to watch your son live and die from AIDS. This is the best chance we have of making a difference for people with AIDS. Do it for them.’”

“Passing the authorization was one long marathon. When it finally passed, it was both a delight, ecstasy, but also a pure physical collapse for me. It felt like a delirium at the time.”

“Oh my God. People were so excited. I mean, oh, it was absolute euphoria, and then it was the reality of, ‘oh, wait a minute, how do we do this, you know, how’s this gonna work?’”

1991 to 1994: Meeting Basic Needs

“And really, a lot of that effort was to, you know, get the damn money out the door fast, because we knew it was needed.”

“You know, our first award was $1.6 million and we thought it was, you know, over a million dollars, oh my God, you know [laughter]! It’s interesting how, how that first year felt; how naïve we were, how new we all were at it.”

“There was always the piece, clearly, for community involvement and that it wasn’t going to be the Federal government coming down and saying this is how you have to spend your money. It was recognizing that every community was different, and everybody had different needs, and these dollars were basically to sort of fill the gaps, more than anything else.”

“This was their first source of funding to really look at putting together a comprehensive set of services.”

“It wasn’t good enough to have a bunch of docs at the table. It was really needing to talk to the individuals and to talk to families.”

“Tempers were fierce. People were very emotional. And you know, people were all wanting money for their, you know, population, and so that was hard.”

“We were thinking about buddy services and case management services and basic needs.”

“Doing that meant no one type of provider could deal with all of their issues. So early on, we learned we have to do this as a team. There’s no way that we could do it otherwise.”

“One of the things we worked on was developing a series of early-intervention services. That’s when we had only AZT, but we thought it was magic at that time, at least for a couple months anyway.”

“And in 1993 and 1994, there was a tremendous pessimism about treatment.”

“It was busy every week. It got busier, every month, it got busier. By the mid-1990s, many, many, many, many patients – 30, 40 patients at a time – were on the service on the in-patient side. Resources were stretched absolutely to the max, and you learn a lot about life when you sort of, you know, think back on the people who faced this prospect of, in many ways, a certainty of death with remarkable grace and bravery.”

1994: Preventing Mother-to-Child Transmission

“When they did the O76 for women, it was a big breakthrough, especially for those of us working in pediatrics because you could actually try to prevent this, you know, you could decrease the transmission rate from mother-to-child.”

“You know, we knew something was happening when they figured that out. Like, even though it was just good ‘ole AZT, it was wow, this is, look at what we can do. Look what can happen.”

“You know we ramped up really quick in terms of training people regarding that protocol. And that was a big contribution to the overall dramatic reduction in new perinatal cases.”

“It was extraordinarily powerful to have that and to see infections go from, I don’t know, 20-a-year in this hospital to zero. But one of the frustrating things was to see AZT work so well in terms of stopping perinatal transmission, and yet still not having what we needed to slow progression down in patients.”

1996: Turning the Corner with Combination Therapy

“When the ’96 thing happened and it was so exciting because we had built our system. We were able to really to go down that path of, you know, antiretroviral treatment really quickly. I mean, we turned directions really fast. Everybody had to.”

“This was like a light switch being flipped, you know. We went from terrible pessimism to exaggerated optimism in a matter of, of you know, a year or less when the protease inhibitors came on the scene.”

“But the excitement of having, actually having a treatment modality was a big deal. And then getting everybody on board in terms of making sure that there were guidelines and that they followed the guidelines.”

“It required some significant training so people understood the changes in treatment and you know, all these drug interactions, et cetera, and very soon on the heels of all the new treatment options, we had resistance pop up.”

“For most chronic diseases, if you take your medicine, sort of, 80 percent of the time, that’s probably good enough. The difference, of course, with infectious diseases, unlike diabetes or hypertension, is if you don’t take the medicine right, the disease becomes resistant to the treatment. So even if you do get around to taking it right, it may not work. If you do it right, the payoff is tremendous. If you do it wrong, it’s arguably worse than no treatment at all.”

1997 to Today: Evolving Models of Extraordinary Care

“As these wonder-drugs have come online and are at our disposal, there’s a perception that it’s a personal choice to be healthy or not be healthy with HIV. So we’re at a challenging moment, because this isn’t true for HIV, and it’s not true for any complex chronic disease.”

“You have to look at that person holistically. So you have to be able to look at their housing if they’re homeless. You have to be able to give them something to eat if, if they’re hungry. So I think that’s, that’s all been very exciting, because I think that’s a very unique way that this disease has been approached.”

“We’ve shown a model that I think is able to deliver extraordinary care to a group of very sick patients.”

“To the extent you get people medical care, with people who know what they’re doing, to the extent that you can support these people through things like case management, food banks, transportation, you’re gonna have a good outcome. You’re gonna have healthier clients. You’re gonna have a better society if you spend your money wisely up front.”

“The Ryan White initiative that’s evolved is a unique partnership between community, the medical establishment, and government. And it was almost like an educational experience: They were helping me to understand how I could benefit from working with them and how I can take that benefit and move it into the community. It was a catalyst for change. In a sense, why did we have the Ryan White CARE Act? We had healthcare delivery systems in America, prior to Ryan White. But we had a system of care that was not willing to step up to the plate for HIV.”

“That’s just such a remarkable thing about the response of the government and HRSA to the 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 has participated and 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 what has been built to date and what has been accomplished.”

“We’re standing on other people’s shoulders. And you know, they sort of fought the good fight and we were next to them and they’re not there anymore and it’s our, you know, responsibility to sort of keep pushing it. I don’t often think about it, but it really is emotional in terms of why people do what they do, and it’s not just like any other job. It isn’t.”

“The people that you meet and work with in this arena are extraordinary people. And they wanna go to bed at night knowing that they made a difference in someone’s life.”

“There was never, ever a question of who we worked for, and we work for people living with HIV and AIDS, always, always, always.”

“We have clients who have been around 25 years, 21 years, living relatively healthy lives. But what we’re also seeing are, is the face changing in terms of more women, younger people, senior citizens, which we rarely saw back then. So what we’re seeing is really that it is not a gay or Black or Latino or transgender, you know, disease. It is anybody.”

“We used to think that is was, that oh, it was just going to be a matter of time. It wasn’t going to be that long. Oh, maybe 10 years, and, you know, then it would all be taken care of. And it didn’t and it isn’t.”

“I like that we are always dissatisfied, [laughter] even as we do well and take pride in that. We’re always sort of like, yeah, but there’s more to do.”

“HIV/AIDS put a spotlight on how we were delivering care and the importance of that patient-centered care and it moved us to our better self.”

Interview Participants

ActionAIDS, Philadelphia, PA: Mary Coco-Brown, and Amos A. Obey

Bebashi, Philadelphia, PA: Gary Bell, Craig Davis, Roy Hayes, Raymond Hayward, Linda Martin, and Anthony Weldon

Boriken Neighborhood Health Center, East Harlem, NY: Maria Delgado, Danielle Milano, and Crimilda Rivera

Bronx-Lebanon Hospital Center, Bronx, NY: Jose Febus, Angel Jenkins, Jennifer Marciano, and Barbara Richardson

Georgetown University Law School, Washington, DC: Timothy Westmoreland

Health Resources and Services Administration: Barbara Aranda-Naranjo, Sheila McCarthy, and Steve Young

New York-Presbyterian Hospital System, New York, NY: Karen Barrett, Eli Camhi, Jay Dobson, Peter Gordon, Paula Merricks-Lewis, and Dorothy Sawo

Philadelphia Department of Public Health, Philadelphia, PA: Jane Baker, Kathleen Brady, Matthew McClain, Coleman Terrell, and Mary Evelyn Torres

Philadelphia FIGHT, Philadelphia, PA: Teresa Sullivan

St. Luke's-Roosevelt Hospital Center, New York, NY: John Oliver, Clyde Robinson, and Victoria Sharp

With Special Thanks to

Jeanne White-Ginder

Photography Participants

ActionAIDS, Philadelphia, PA

AIDS Service Center NYC, New York, NY

Bebashi, Philadelphia, PA

Boriken Neighborhood Health Center, East Harlem, NY

Bronx-Lebanon Hospital Center, Bronx, NY

Brooklyn Hospital Center, Program for AIDS Treatment and Health Center, Brooklyn, NY

Grady Health Systems Family Clinic, Atlanta Family Circle Network, Atlanta, GA

HIV Clinic, University of Kansas School of Medicine, Wichita Medical Practice Association, Wichita, KS

Miami Dental Access Program, University of Miami Miller School of Medicine, Department of Epidemiology and Public Health, Jackson Memorial Hospital, Division of Oral Surgery and General Dentistry, Miami, FL

Native American Health Center, San Francisco, CA

New York-Presbyterian Hospital System, New York, NY

Philadelphia Department of Public Health, Philadelphia, PA

Philadelphia FIGHT, Philadelphia, PA

St. Luke’s-Roosevelt Hospital Center, New York, NY

Tarzana Treatment Center’s Specialty Care Clinic, Los Angeles County, CA

University of New Mexico Health Sciences Center, Truman Street Clinic, and New Mexico AIDS Services, Albuquerque, NM

Ursuline Sisters HIV/AIDS Ministry, Youngstown, OH

Photography From Bearing Witness (to AIDS)

by Thomas McGovern

Additional Photography

AP Photo/Eric Draper

AP Photo/John Duricka

Andrew Kohan

AP Photo/Kim Kulish

AP Photo/Brennan Linsley

AP Photo/Rick Maiman

AP Photo/Photographer Unknown

AP Photo/Eric Risberg

AP Photo/John Russell

AP Photo/Karen Tam

AP Photo/Charles Tasnadi

AP Photo/Nick Ut

Terry Ashe/TIME & LIFE Images/Getty Images

Randy Bazemore/Miami Herald/Newscom

Donna Binder

FILE/AFP/Getty Images

Scott J. Ferrell/Getty Images

David T. Foster III/The Charlotte Observer/Newscom

Fotolia

Therese Frare

Rick Gerharter

iStockphoto

Michael Mally/Philadelphia Inquirer/Newscom

National Library of Medicine

NDX Photos/Newscom

Newscom

Bob Pepping/Contra Costa Times/Newscom

Denis Poroy/AFP/Getty Images

U.S. Senate Historical Office Collection

Scott Sommerdorf/San Francisco Chronicle/Corbis

Clint Spaulding/PatrickMcMullan.com/Sipa Press/Newscom

Susan Steinkamp/CORBIS

Vicki Valerio/Philadelphia Inquirer/Newscom

Taro Yamasaki/TIME & LIFE Images/Getty Images

Taro Yamasaki/TIME & LIFE Images/Getty Images

Jeanne White-Ginder, private collection

Brought to you by the U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau, August 2010.

The Ryan White HIV/AIDS Program