Ryan White & the CARE Act of 1990

Kelly Therese Pollock  0:00  
This is Unsung History, the podcast where we discuss people and events in American history that haven't always received a lot of attention. I'm your host, Kelly Therese Pollock. I'll start each episode with a brief introduction to the topic, and then talk to someone who knows a lot more than I do. Be sure to subscribe to Unsung History on your favorite podcasting app so you never miss an episode, and please tell your friends, family, neighbors, colleagues, maybe even strangers, to listen too. Ryan Wayne White was born on December 6, 1971 in Kokomo, Indiana. His mother, Jeanne, bled profusely after the delivery, and when Ryan was circumcised, he too bled profusely. A hematologist at Methodist Hospital in Indianapolis, where Ryan was transported, diagnosed him with classic or severe hemophilia. Although, for previous generations, treating complications from hemophilia had usually meant hospitalization, Ryan was born late enough that many of his bleeding episodes could be treated with at-home shots of Factor VIII injections that doctors authorized for him by the time he turned five, and Jeanne learned to give him. Many people with hemophilia, including Ryan, saw Factor VIII as a lifeline. Ryan called it Old Faithful. The downside of this lifeline was that it pooled blood and plasma from 1000s of donors, dramatically increasing the user's risk of exposure to diseases like Hepatitis B and HIV. But in the early 1980s, the National Hemophilia Foundation, deciding the risks of such exposure didn't outweigh the benefits of using Factor VIII injections, advised people with hemophilia to, "maintain the use of concentrate," and folks like Ryan did. In the summer of 1984, Ryan was 12 and a half years old and living with his mother after her second divorce, when he began to feel constantly ill, with night sweats, lethargy, and stomach cramps. By December, when he couldn't even get off the school bus without feeling tired and one weekend, ran a fever of 104 degrees, Jeanne took him to the hospital, where X-rays showed that he had pneumonia in both lungs. A course of antibiotics failed to treat the pneumonia. At Riley Hospital for Children in Indianapolis, Dr. Martin Kleiman suspected AIDS, and a biopsy of the lungs revealing pneumocystis carinii pneumonia, PCP, confirmed his suspicion. Ryan was too sick to return to school that academic year, but he hoped to go back to Western Middle School in Russiaville, Indiana in fall of 1985. However, on July 30, 1985, J.O. Smith, the superintendent of the Western School Corporation, WSC, said that Ryan could not attend because he was living with AIDS. That decision and the ensuing legal battle by the White family would lead to national media coverage and would confer a type of celebrity status on Ryan. For months, Ryan was forced to attend courses remotely, which in 1985, meant over a landline telephone. In February, 1986, he was able to attend courses in person for a single day, but 42% of the students stayed home because of fears that they would catch AIDS from Ryan, and their parents convinced a judge to issue a temporary injunction to prevent Ryan from attending classes in person. Finally, in August, 1986, Ryan started eighth grade at Western High School. After a difficult year there, though, the White family moved to Cicero, Indiana, 30 miles from Kokomo. Elton John, who would later credit his friendship with the White family with convincing him to get sober and ultimately saving his life, helped Jeanne purchase the home in Cicero. In June of 1987, years into the AIDS epidemic, President Ronald Reagan issued Executive Order 12601, creating the President's Commission on the HIV Epidemic. Ryan testified before the commission in Washington, DC on March 3, 1988. In January, 1989, a made for TV movie called, "The Ryan White Story" debuted on ABC. An estimated 15 million people watched the movie, which told the story of Ryan's expulsion from middle school and his family's legal battle. Upon the release of the film, residents of Kokomo felt that they'd been unfairly maligned, and the town's mayor receiveda deluge of critical mail. In late March, 1990, Ryan visited southern California, attending a pre-Oscar party, and then with former President Ronald Reagan announcing the creation of the Ryan White National Program for AIDS education,an initiative of athletes and entertainers for kids. Shortly afterward, he felt very ill and returned to Indiana, where he wasquickly hospitalized at Riley. Ryan White died on April 8, 1990, with his mom, his sister Andrea and Elton John at his side. He was 18 years old, just a month shy of graduating from high school. 1500 mourners attended Ryan's nationally televised April 11 funeral at Second Presbyterian Church in Indianapolis, including Elton John, First Lady Barbara Bush, Howie Long, and Phil Donahue. Senator Ted Kennedy had introduced the Comprehensive AIDS Resources Emergency Act, or the Care Act, in the Senate in early March, 1990. The bill had already had 25 co-sponsors, in large part due to the relentless efforts of AIDS activists throughout the late 1980s. The formal report of the Senate Labor and Human Resources Committee was published several weeks after Ryan's death, and dedicated in his honor, noting that Ryan,  "introduced to people across America and across the world, a face of AIDS that caring human beings could not turn their back upon." With Ryan's name attached, the Ryan White Comprehensive AIDS Resources Emergency Act of 1990 passed the Senate on May 16, and the House on June 13. After reconciliation between the two versions, President George H.W. Bush signed the bill into law on August 18, 1990, even though he opposed the disease specific approach. BySeptember of that year, though, in the midst of budget battles, the Senate Appropriations Subcommittee on Labor, Health and Human Services had funded only 110 million of the nearly 900 million authorized by the bill. It wouldn't be fully funded until 1994. HIV/AIDS remains a public health threat. According to the US Department of Health and Human Services, approximately 1.2 million people in the United States have HIV, about 13% of whom do not know it. Joining me in this episode is Dr. Paul Renfro, Associate Professor of History at Florida State University, and author of "The Life and Death of Ryan White: AIDS and Inequality in America." First, though, is a clip of an interview I did with actress Alyssa Milano for the Two Broads Talking Politics podcast in July of 2019, where she discusses when she met Ryan White, an event that sparked the beginning of her political activist work.

Alyssa Milano  11:14  
So it was during the 80s, and I was on a show called, "Who's the Boss?" which was a top 10 show at the time, and and so I became, sort of like a, like a teen pop icon. And it was kind of a weird existence, obviously, being a teenager and having some sense of celebrity and being famous, and it was really awkward. It was just, it was a it was a tough thing to navigate as as a young person. And one day, I got a phone call from Elton John, just to give you a little idea of how crazy my life was. And this was during the time when he was doing a lot of work for for AIDS and really advocating. And you know, it was also the time when, during, you know, the 80s, there was a lot of stigma attached to having HIV/ AIDS, and basically, you know, the government, those with different ideologies, basically fed into every fear that we had about what this disease could potentially be and how you get it. And it was just really horrible. Elton introduced me to a little boy named Ryan White, and Ryan was HIV positive, and he'd been thrown out of his school because they said that, you know, he could give AIDS just from casual contact. And he fought for his right to go back to school, and won, and he spoke in front of Congress, and he really started to really shift this narrative around what it meant to be HIV positive.And he had asked me one day if I would go on TV and kiss him on TV to prove that you could not get HIV/AIDS from casual contact. And so at the height of, you know, my sort of popularity, and the height of the stigma surrounding HIV/ AIDS, I went on the Phil Donahue show and kissed Ryan to prove that you could not get HIV/AIDS from casual contact. And it was a monumental thing for me, because it really put in perspective what it meant to be an actor and to have a platform. And from that moment on, I knew that this is what I wanted to do, and that I was going to use my voice in whatever way I could, in whatever opportunities I had to affect positive change. 

Kelly Therese Pollock  14:04  
Hi, Paul, thanks so much for joining me today.

Dr. Paul Renfro  14:06  
Thank you for having me. I really appreciate it.

Kelly Therese Pollock  14:09  
Yes, I'm really happy to be talking to you about this book. I want to start by asking, what got you interested in writing this book? I think it's your second book, so how you came to write this story.

Dr. Paul Renfro  14:22  
Right, so this is a story that's loomed over my life and probably the way in which I first learned about HIV and AIDS. If you know, I probably don't remember all that clearly, but Ryan died when I was two and a half, and his story lived on throughout the 90s and became this example of AIDS education in a way in which people could talk about AIDS and tolerance, I think, in in ways that were maybe appealing to a broad swath of the American public. And so I wanted to  explore some of those themes, and the the way in which he was understood to be the innocent or more acceptable face of HIV and AIDS. And as a queer person, I recognize the ways in which that sort of language can be weaponized and and how harmful it can be. And I'm fascinated. My first book dealt also with the theme of innocence and victimhood. And I I'm just fascinated by that theme, and how American politics, not just American politics, but I think it's,it's quite prevalent in American politics, how it is predicated on notions of innocence and and how that drives certain policy decisions. Certain assumptions are kind of embedded into certain policies, and those rest on ideas of innocence, which, of course, are racialized and have gender specific and and other sorts of connotations. So that's really what brought meto the book. You know, I'm very lucky to have a job where I can write about, kind of what I want to write about. And, you know, that was that's less true for the first book, but for the second book, I had a great deal of freedom and latitude. So this is a story that's always intrigued me and and one that I really wanted to tackle.

Kelly Therese Pollock  16:24  
Could you talk a little bit about how you chose to frame the book? It's not a biography of Ryan White. There are biographical elements, but how you decided sort of what the the focus and the framing of the story would be.

Dr. Paul Renfro  16:38  
Yeah. So, yeah, there are biographical elements, and the first chapter is probably the most biographical, but I wanted it to be sort of a meditation on innocence and a discussion or an analysis of how Ryan's story fit into the politics of the moment, how it fit into the or intersected with or diverged from the HIV/AIDS, movements, the activities of ACT UP. And,you know, I'm a political historian and a cultural historian, and so I'm interested in how narratives get formed, how they are deployed in different contexts. And I wanted to really highlight that narrative, the Ryan White story, you know, how it is, how it was constructed, the assumptions embedded within it, and different elements of that story, and how, how it had an impact on all people living with HIV and AIDS, and more broadly, the American public, and really, people beyond the US, you know how they grappled with HIV and AIDS and how the figure of Ryan White enabled them to elaborate certain narratives or to articulate certain thoughts that may have been unspoken or may have been spoken in different ways, without that figure or without that sort of symbol. So, yeah, I wanted to, you know, what's interesting about Ryan is, you know, he had, obviously, he had interiority, but so much of his story was filtered through and mediated by politicians, news media, the American public, more broadly. So he really became whatever people wanted him to be. And that's that's kind of how I set out to write it right? I kind of wanted to go through these different narratives, or these different approaches to Ryan's story, and the different deployments or uses of the story, and some would say the abuses of those stories, or that story. So yeah, that's that's kind of what led me to structure it in this particular way. It's roughly chronological, but also it's focused on different themes and and different ideas and expressions within and of that story.

Kelly Therese Pollock  19:13  
So Ryan was quite literally a poster child before he even was diagnosed with HIV. And so his his life, in many ways, was never quite we're going to talk a lot about normal and what normal means, but his life, in some ways was never quite normal. Could you talk a little bit about that and how that shapes his reaction, perhaps his his mom's reaction to when he does get HIV, and the way they're approaching dealing with this disease?

Dr. Paul Renfro  19:44  
Right, so Ryan had hemophilia, severe hemophilia, and he benefited in some ways, and obviously not in others, from the post World War II boom in medical research that led to the development and growing availability of things like Factor VIII, which enabled people with hemophilia to inject themselves rather than going to inject themselves with this clotting factor that could help in the event of a bleeding episode, right, rather than going to the hospital, spending long periods in the hospital, which he still did. He was a very sickly child, but that status as someone with hemophilia, I think, primed both Ryan and his mother and people around him, and more generally, people you know who would learn abouthis story later, it primed them to discuss him in a particular way and to discuss his disability, and later interlocking disabilities in very specific ways. So he became courageous. He became and I'm not saying that he was not courageous.It's just that in these dominant narratives, he became sickly, he became courageous. He became also very resilient. And so with hemophilia, all of these narratives were already sort of baked in, right or they had been refined through his bout with with hemophilia. And of course, it's his use of Factor VIII that leads to his HIV diagnosis. And there's a, obviously a direct relationship there. And I think there's a direct relationship as well between the way in which he and his mother understood his disability, that is his hemophilia, and how that allowed them to talk about HIV and AIDS. Essentially, this is something that can be tackled through a positive attitude. It can be tackled through kind of, yeah, resilience. It can be tackled through ambition, and sort of not ambition, but kind of a bold approach to life, kind of grabbing the bull by the horns, right? There's an anecdote in the story in which, in the book in which, uh Jeanne White, Ryan's mother, indicates that she would not put a helmet on him when he was a child right. That's sometimes encouraged, or at least it was for folks with hemophilia, for children with hemophilia, given the potential severity of an injury right to the head that might lead to substantial bleeding and obviously complications. She indicated okay, if that, if that would maybe teach him that he is different, that he is, that he's potentially kind of weak in a way. And so there's a conscious rejection of that and a conscious rejection of disability that shape their response to to hemophilia, and subsequently to their their response to HIV and AIDS. And there's also a conscious rejection of Ryan as disabled in the ways in which other children are disabled. So I sense this sort of effort to not necessarily rank or situate Ryan above individuals with more severe disabilities, but there was a kind of distancing in detected in a lot of their writing or their a lot of their rhetoric concerning his stints in the hospital, basically the idea being, well, I'm not as disabled as other people, and that is also kind of shaping how they're approaching HIV and AIDS. And the implication is, you know, you you can't, sort of, or you shouldn't necessarily, fully embrace or spotlight, you know, all of the the ills that are facing you, if you have HIV and AIDS or if you have hemophilia, basically count your blessings, which can be positive, but also it's, it's this very individualized narrative or or approach to disability, one that obscures structural factors, you know, these other forces that that might render some individuals more susceptible to certain disabilities, illnesses, but also the the effects of those. So I talk a little bit about how those narratives intersect with these broader sort of neoliberal narratives about disability and about rehabilitation and about kind of self management, and that's it's largely in chapter one, but I think it also shapes how people talk about Ryan and how they view him as this exceptional person and an exceptional personwith AIDS. And that only kind of serves to place him at the top of what Anthony Petro calls the hierarchy of victimhood within the HIV and AIDS crisis.

Kelly Therese Pollock  25:07  
So I'm old enough to have remembered at least somewhat, somewhat have been aware of the Ryan White story being in the news, and I know from the study of history about the failure of the government to respond to the AIDS crisis. But one thing in this story that was completely shocking to me was the failure of the FDA to respond in the early 80s, like '82to '84, when there was the ability to screen for HIV in the blood, in the blood supply, and was not done. So people like Ryan White, other people with hemophilia, may not have needed to have been infected at all. Could you talk a little bit about that, and the the blood industry, so to speak, the failures there, and what the sorts of things that could have been prevented, and the incentives that were going on?

Dr. Paul Renfro  26:02  
Right. So there was this strange sort of tension between, and I think this kind of goes to your question about normality as well, this tension between this desire for people with hemophilia to be normal, but also this recognition that they were perhaps quite vulnerable, and when it came to infectious diseases in in the blood supply. So even before HIV became this major threat within the blood supply, people with hemophilia were particularly susceptible to hepatitis, I believe, hepatitis B. And immediately before Ryan was diagnosed with AIDS in December of 1984, he was diagnosed with hepatitis, I believe, hepatitis B. So there is this kind of perverse incentive to almost not acknowledge that, because of the conveniences afforded by Factor VIII, some of which I alluded to earlier, the ability of people with hemophilia to live, quote, unquote, normal lives, right? And that almost precludes a larger sort of discussion, or discussion about and reckoning with the reality that this is going to infect a lot of people and kill a lot of people, which is precisely what happened. So, and yes, there are these perverse financial incentives as well. These private entities are unwilling to sort of acknowledge the threat. And some of this is also enabled by hemophilia advocacy organizations, which which have this sort of interest in maintaining this allure of or veneer of normality and and almost sort of refusing to acknowledge the the grave threat that is posed by HIV in the blood supply. So, yeah, I actually didn't know much about this before I started the research for this book. I had no clue that the blood supply was not really inspected, was not was not heat treated, until the mid 80s or so. And there's an interesting sort of, I mean, we've talked a little bit about blame already, and innocence and guilt, but the kind of act of banning so called gay blood, you know, almost serves as a way to divert blame and to say, well, yes, there are all these institutional failures, this failure to reckon with this tremendous thread, well, we might as well just blame gay people for it, or to say, you know, that is our effort to sort of cover our own asses and to, you know, to make amends for something that could have been prevented from the outset. And of course, there were tremendous uncertainties and a general lack of understanding when it came to HIV and AIDS. And I would suggestthat many of those persist to this day. But I think that most people would recognize that, yeah, there is, there's the potential for and people were talking about it then they were saying, there is the potential for infection, for mass infection, because of these technologies, which, yes, have afforded people to live lives that that might resemble the livesof so called ordinary Americans, but that also poses, it posed tremendous risks, and I mean, 1000s of lives were shaped and destroyed because of it. 

Kelly Therese Pollock  29:43  
You talk a lot in the book about the ways that Ryan's story helps bring attention and sympathy to the AIDS crisis, brings some political attention eventually, as he's dying. But at the same time, of course, the way that he is posed as this innocent victim, it makes other people who are living with AIDS seem, you know, guilty by comparison, maybe less worthy of care. So could you talk a little bit about that, sort of the hazards of respectability politics and the very complicated thing that is going on here, where especially for AIDS activism groups, you know, they they certainly want the the resources and the help of the government, but it's putting them in an awkward position if they are being looked at as less worthy than a person like Ryan White?

Dr. Paul Renfro  30:48  
Right, yeah, and it's really, I think, complex, and it's, I'm teaching a class on HIV and AIDS right now, the history of HIV and AIDS, specifically in the US context. And we've read some of these, some of the chapters from my book, and students struggle with it too. And I like to, you know, I think it's an interesting sort of intellectual exercise to say, "Okay, well, what you know? What can we learn from this story and how it was deployed, both in the service of awareness, but also in the service of reinforcing hierarchies that that existed before, or maybe even sort of creating new ones?" Yeah, I think it definitely put, as you indicated, groups like ACT UP and others in a very awkward position. And you know, I didn't find in the historical record, and I'm sure we'll talk about the CARE Act in a second, but much evidence of these organizations piping up when Ryan was being floated as a potential, the potential namesake for the Comprehensive AIDS Resources Emergency Act. And I have to think that that was strategic, but it's also it's telling because he was so unassailable in a way, and it's it's telling because you would think that, given a lot of the approaches and stances of these organizations like ACT UP, which was very forward thinking on needle exchanges, very forward thinking in terms of including people of color and women, you know, drawing on not just the Civil Rights Movement, the African Americanfreedom struggle, but also particular strands of feminism. I mean, there were, there were communists in ACT UP. I mean,there were all these different groups and entities. So, you know, I have to think that that silence was strategic, but also itwas something that was controversial within, within the ranks of ACT UP. So, yeah, I mean the the very notion of innocence, I think some, some news media outlets, some politicians who were sympathetic to the cause of AIDS activism, the causes, they maybe eschewed that kind of language, but even within other phrases they might use, such as, through no fault of his own, or, I mean, that's the main one that that appeared throughout the throughout newspaper articles and the Congressional Record, etc, but through no, no fault of zone, I think, does the same sort of work that innocent does where it says, well, folks who are and basically it's just reinforcing stigmas attached to certain behaviors or attached to certain identities, as if you know engaging in anal sex or using intravenous drugs should subject you to death, right? But that's the implication, even if it is unstated, and a lot of this is also obviously racial, eventhough, and I mentioned this in the introduction, Ryan White is very rarely identified as a kind of explicitly as a white child. But I think innocence and whiteness go hand in hand, kind of in in the public imagination, if we want to use that formulation. And even though, at least at the time, and Sarah Schulman and others have noted this, gay men were racialized as white, or coded as white. Intravenous drug users, or people who use intravenous drugs were not and that that sort of distancing, that sort of effort to to separate, right, that that has to be understood, I think, as racial, but also spatial, right? So the fact that he's from Indiana, relatively small town in Indiana, you know, this midwestern poster child,someone who is not sexually threatening, so heterosexual by all accounts, but also not sexually active, someone who is, is telegenic, photogenic, right? And by midwestern, I mean, and relatively rural, I mean not from New York or not from San Francisco, right? And not implicated in the, the sort of, you know, the the ills, the evils that, that sort of are understood to be associated with those spaces, I think, then and to a lesser extent now. So, yeah, I think all of this goes into this, really, it all feeds into this kind of complex narrative, or kind of web of of signifiers that that emerged during this and I'm totally mixing my metaphors here, but you know that very much define this story and how people understand it and how they approach it and how they use it. And I think that those it's difficult because yes, the CARE Act, as we'll probably discuss in a second, delivered much needed federal funding for HIV and AIDS, also embedded within that were, were these very assumptions and and these efforts such as needle exchange bans, etc, that that reinforced stigmas and that that harm people, right? So, yeah, how do you kind of square that circle? It's one that I'm still struggling to square. I I think at least where I ended up in the book is I, I see a way in which the Ryan White story can be deployed in a more expansive, more inclusive way, and I don't think it's totally inconsistent with the ways in which people have understood his story, but it's also one that rejects very consciously, the idea that he is somehow exceptional, or that people like him are more deserving of care and and sympathy than the least among us.

Kelly Therese Pollock  36:59  
Let's talk about the CARE Act, because I just want to underscore for a minute how appalling it is that it is not until 1990 that this act is passed after, I mean, AIDS has been around for a long time by then, but it has been publicly, very visible since when was Ryan White diagnosed, '84 you know. So like that story has been very visible to people. It's been ravaging communities, and it is not until 1990, but as you said, you know, once Ryan White's name gets attached to it, suddenly it's like politicians can't say no to to at least passing the idea of funding, but not necessarily actually releasing the funds that go with it. Can you talk about that? What, what happens with the legislation, and then the hang ups of not actually getting the funding that is approved?

Dr. Paul Renfro  37:52  
Right. So yeah, it's not until March of '90 that such a bill is seriously being considered. And when Ryan White dies in early April of 1990, his name was attached to the bill. And even though the the bill is relatively popular before, it's his death and his funeral, which, which is this, you know, media spectacle. Michael Jackson attends the funeral. Barbara Bush, the First Lady at the time, attends a funeral. It is held in the Second Presbyterian Church in Meridian Hills in Indianapolis. 1500 people attend. It's broadcast live on CNN. It is, I believe, the lead story, if not just discussed on each of the three major news programs that evening. And I would have to tell my students, you know, that was a big deal. The being on the nightly news was a huge deal. It's, you know, still not a small deal, but it back then was a huge deal. Yeah, this is something that everybody knew about. I think there was a poll released the following month that indicated that something like 88% of Americans had heard of, American adults had heard of this story and heard of his death. So that, I argue, provided the political capital to pass this act, but also it's an act that's unpopular with social conservatives. It's unpopular with the president, President George H. W. Bush, who begrudgingly signs it into law, but he and his administration note that this sort of disease specific approach, meaning the the fact that it's HIV and AIDS that are being targeted, that's that sets a strange precedent, and he doesn't like that, and it's an uphill battle to get this funded. And I think the kind of the fact that the death and funeral of Ryan White were these maybe short lived media moments that might have gotten the bill passed and signed into law, but once that urgency evaporated, or, you know, at least in the minds of politicians or certain politicians, then the need to kind of fund this was, was was less, less pressing. And this is also happening against the backdrop of economic austerity, of an economic recession, and that leads to these, these hang ups, these delays that you were talking about, and it's not until 1994 and only with tremendous pressure being applied to Bill Clinton, when he was running for president, and finally, when he ascended to the Oval Office in 1993 and then into 1994, it's only then that funding is secured, and it's still less than than people would have wanted. So I think this also gestures back to that earlier question about the good that's been accomplished through the story in that moment, but also the limitations of perhaps the this sort of, I guess, narrow approach to the disease right, or to any sort of health crisis, I suppose. So, Ryan and his name not only kind of legitimate and enable the passage of this bill, they also enable the needle exchange bans that I that I mentioned earlier, that were put into place, and also unleash, or further facilitate the sort of rhetoric of people like Jesse Helms, the senator from North Carolina who plays a big role in the book, who is seeking to embrace Ryan and to at least rhetorically and materially, really protect him from what he calls something to the effect of, you know, deplorable activities, or what have you that in his view and in the minds of a lot of people in his camp, these activities led to the infection of Ryan White. They led to his death. So for him, the very idea of passing legislation without punishing the individuals he deems responsible for the death of an innocent, right, you know, that just doesn't compute. And he's he's even at odds with people like Orrin Hatch, right who, who is, to his credit, a big booster of of the bill, along with Ted Kennedy. But you know, they're in the same political party. They're in the same political tradition, one might say. And yet, Helms sees Hatch's support of this as somewhat of a betrayal. So I think all of that is is allowed or enabled by Ryan's story. I don't think it's, there might be a passage in which I might be misinterpreted when I'm not saying I agree with Helms, but I'm saying that his reading is not totally unreasonable, and his use of Ryan White's story actually is pretty consistent with the ways in which a lot of liberal media and other entities are are deploying his story and constructing it. So yeah, all that goes to say that the CARE Act, I think, is indicative of this sort of tangle or this tension that we're talking about here. You know, how do you how, how do you recognize that this sort of respectability politics does maybe yield some positive effects, right? Or does have some positive effects, while at the same time it's never going to eviscerate the it's never going to kind of transcend the limits of those, those boundaries. It's, it's only as big as people's conceptions of respectability or who is deserving. And that's I want to sort of with this book, kind of challenge those, those boundaries, test those boundaries.

Kelly Therese Pollock  44:41  
HIV/AIDS, of course, is not in the past. It still exists. And we, all of us, have recently experienced a major pandemic. And then, as you talk about in the book, of course, also a not quite as overwhelming, but the pandemic of mpox as well. Could you just talk a little bit about, as you do in the book, about the relationships between HIV/AIDS, and it's how it's ongoing, and what we've learned from COVID and mpox?

Dr. Paul Renfro  45:12  
Yeah, I am struck by, I mean, it's difficult, or maybe not advisable, to draw these direct historical analogies, as I do, but I think, I think there is something to be said for the parallels between HIV/AIDS and and COVID and mpox. And it's not as simple maybe as some might like it to be, you know, I think in some narratives, well, you know, HIV and AIDS were ignored, and then they were not ignored, and protease inhibitors and highly active antiretroviral therapy came about, and that led to the end of AIDS. That that is kind of a dominant, I think, not dominant, maybe, but it is a popular interpretation, and the blame is kind of laid at the feet of not unreasonably so, but Ronald Reagan and George Bush and others. But I think it's an incomplete story, because, as you mentioned, AIDS is not over. It's not something that can be relegated to the past or localized in the global south. And I think we have to think more broadly about culprits, if we want to think about, you know, who is, who is to blame. It's a lot of it is structural, as we suggested earlier, and but I think that pastness of AIDS, as some scholars have called it, also applies in in other epidemics and other crises as well. I think there is this desire for COVID to to be over and for it to have ended, maybe much, not that it's over, it's just that people wanted it to end, and that's an understandable sort of human impulse. But also it ignores the fact that plenty of people, when folks thought it was over and and today, are still getting sick and are dealing with the effects of long COVID. And within that epidemic, that ongoing epidemic, there are similar hierarchies of victimhood. We saw similar patterns of blame, where Asian Americans were targeted, and similar things have happened in mpox, you know, the same sorts of stigmas that were attached to and are attached to same sex desire, those things appeared in mpox. And with the availability of vaccines, for some people, there's this urge to again, situate that in the past or in Africa, when the threat exists for a lot of folks, and a lot of folks don't have access to the very therapeutics or or drugs that that that could potentially serve serve to end or severely limit the effects of of these pandemics. But that, again, goes, goes back to this structural question, right? You know, why aren't these drugs and therapeutics available for more people, and how, why are people getting rich off of this? And this is a question that ACT UP was asking a long time ago. It's, a question that that I think was very much present in in COVID, still is and and with mpox as well, where through, I mean, in which a lot of people don't have access to these, these drugs or these potential remedies? So, yeah, I think it might be overly simplistic, but I do see these, these linkages between these different historical moments, and in many ways, I mean, they're completely overlapping, because none of these epidemics have ever ended.

Kelly Therese Pollock  49:10  
Can you please tell listeners how to get a copy of your book?

Dr. Paul Renfro  49:16  
Wherever you get your books, you should be able to get "The Life and Death of Ryan White." The UNC Press website might be the best way to get it, but if you want to purchase it at a nefarious online retailer, I think it is on sale at the nefarious online retailer that I have in mind, and my publicity director said it's okay for me to advertise that nefarious online retailer and that it's good for for everybody, so maybe not everybody, but so if you want to buy your books there, you can do that.

Kelly Therese Pollock  49:52  
Is there anything else you wanted to make sure we talk about? 

Dr. Paul Renfro  49:55  
I just wanted to thank you for a wonderful conversation, and I really appreciate the invitation. 

Kelly Therese Pollock  50:00  
Thank you. It was a pleasure to speak with you, and I really, despite the subject matter, really enjoyed the book. 

Dr. Paul Renfro  50:07  
Thank you so much.

Teddy  50:33  
Thanks for listening to Unsung History. Please subscribe to Unsung History on your favorite podcasting app. You can find the sources used for this episode and a full episode transcript @UnsungHistorypodcast.com. To the best of our knowledge, all audio and images used by Unsung History are in the public domain or are used with permission. You can find us on Twitter or Instagram @Unsung__History, or on Facebook @UnsungHistorypodcast. To contact us with questions, corrections, praise, or episode suggestions, please email kelly@UnsungHistorypodcast.com. If you enjoyed this podcast, please rate, review, and tell everyone you know. Bye!

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