In This Episode
Too often, we focus on the disease that affect people rather than the people those diseases are affecting. That failure to pay attention to people lets the disease take more than their health, it lets it take their identities. But we can stop it. Prof. Celeste Watkins-Hayes studies the ways that women with HIV negotiate their illness and how it shapes their lives. She joins Abdul to talk about her work, her book “Remaking a Life,” and about what it can teach us about rethinking how we respond in times of health crises like COVID-19.
Dr. Abdul El-Sayed: COVID-19 deaths are beginning to decrease nationwide as the CDC debates easing COVID restrictions. A 1,430 New York City employees, less than 1% of the city’s workforce, were fired after failing to meet the vaccine mandate for public employees. A third person has been cured of HIV through cord blood transplant, opening up a major advancement in treatment for the disease. This is America Dissected. I’m your host, Dr. Abdul El-Sayed. I want to get a little personal with you today because in order to understand why this episode and the conversation we’re having today is so important to me, I want you to understand why I decided not to continue in my medical training after I graduated from medical school. It goes back to a patient I helped care for when I was a medical student. I was doing a sub internship, basically an apprenticeship for medical students, at a tiny hospital on the northern edge of Manhattan. I just finished my residency application and I was planning to train in internal medicine. One morning, I was paged to come down to the emergency room to see a patient who’d fallen and hit her head on the subway steps. It was January, a particularly cold one at that, and the steps to the subway in New York City can be really icy. I mean, I’ve fallen a couple of times. The patient I met that day was unhoused. She was Black and living with alcoholism, living without so much of the privilege I walk around with each day. I found my way to the emergency doctor, a resident in his third year of training. I asked him an obvious first question. What did the CT show? If you fall, hit your head, and find yourself in an emergency room, the first thing you get at that emergency room is a head CT to rule out a brain bleed that can kill you. We didn’t do one, he said. Why not, I asked. Well, she barely hit her head. I could see a welt forming on her head, and I hadn’t even spoken to her yet. I pushed him on the scan. He told me the real reason. Well, she’d be a social admin, he said. For the non-doctors, a social admit is code for someone who you don’t think has a real medical problem. He was in a rush to get my attending to sign off. See, she’d been drinking, and if she was in the ED, that means she wasn’t going to get her next drink. And if you live with alcoholism and you don’t get access in that next drink, you can start to withdraw, which is a medical emergency. The longer we waited, the more likely he’d have to admit her. After I spoke to her, I realized there was a lot more going on with her than anyone cared to even ask. She’d had high blood pressure her whole life, but now had low blood pressure. She told me she had diabetes and HIV, and given her circumstances, there was no way either of them were well controlled on medication. I called my attending and I told her what was going on, and she agreed that we should admit her. After doing a full workup, we found that she was in stage three HIV, or full-blown aids. HIV had infested her adrenal gland, a small lump of hormone-producing tissue that sits on your kidney, which helps control your blood pressure. Her blood glucose was extremely high, and on top of all that, she had an actively bleeding pelvic mass—all of which had been missed in the emergency room. Our team took care of her for two weeks, and for me, she became a referendum on my medical career. These were the kind of folks that I wanted to care for as a doctor. Over those two weeks, we worked out a discharge plan to help her get control of her HIV and get back into housing. She’d go into the only rehab facility that accepted HIV-positive patients. Then she’d transfer to permanent housing facility she’d previously been accepted to. But on the day of her discharge, she decided against our plan, going home instead within an estranged daughter. Wait, I didn’t know you had a daughter, I told her. You didn’t ask, she said. I had, but she never told me about her. Turns out that they hadn’t spoken for years. Well, what happened the last time you fell out of communication, I asked. Well, I started drinking, she said. And what makes you think you’re not going to start drinking again, I asked her. Well, you all fixed me, she said. I haven’t had a drink in weeks. I wish that was how it worked, I said. This is something that’s going to take a lot of hard work and this rehab facility, they can help. Maybe you go to rehab, get settled in your new housing and then . . . Well, I’m going back home with my daughter, she said, you’re not better than me, don’t tell me what to do! You’re right, I told her. She went home with her daughter that day. And two weeks later, I was getting on the subway to get dinner with a friend. I see a body laid out on the seats. She turned her head and it was her. I pulled my residency application the minute I got home. Our health care system, frankly, our society fundamentally fails people like her every single day. We fail her the minute they get into the system, just like that resident had. But we fail her even before they get there, too. Part of the problem is that these systems, they dehumanize people. For the four years I was in medical school, I found myself learning tons about the minute details about the way our physiology works or doesn’t work. But there’s a way that zooming into someone’s body obscures who they are as a person. People are more than their diagnoses, more than their pathology. I’ve been thinking about her a lot these last few weeks. Recently, I picked up an incredible book called “Remaking a Life” which tells the story of women living with HIV. It was written by my friend and colleague, Professor Celeste Watkins-Hayes, a professor of public policy and sociology at the University of Michigan. Her work captures the way we dehumanize people with disease, offering an antidote and an agency back to them, reminding us what we miss when we focus on pathology rather than people. I just knew I wanted to have her on for a conversation about the incredible women she wrote about, and what it can teach us about the pathologies that happen above the skin, and how what she’s learned shapes the way we respond in this moment. Our conversation after this break.
Dr. Abdul El-Sayed: Hey, there, how are you? Good to see you.
Prof. Celeste Watkins-Hayes Good to see you, too. Just let me know when we are on.
Dr. Abdul El-Sayed: I think we are. Are you ready to go?
Prof. Celeste Watkins-Hayes I’m ready to go.
Dr. Abdul El-Sayed: All right. Can you introduce yourself for the tape?
Prof. Celeste Watkins-Hayes I am Dr. Celeste Watkins Hayes. I am a sociologist who is a professor at the University of Michigan. I am the GE Fairfax Collegiate Professor of Public Policy and I am also a professor in the sociology department at U of M.
Dr. Abdul El-Sayed, narrating: I got to know Professor Watkins Hayes after reading her work. She’s my colleague at the University of Michigan. Every time I talk to her, I learn something new about how to think about the interplay between health and society or about the nature of inequity. I try to bring those lessons to this pod every week, and I’m glad that today you get to hear from Celeste herself.
Dr. Abdul El-Sayed: Well, we really appreciate you taking the opportunity to join us, and I deeply value the perspective that you take because you’ve been studying the HIV epidemic through the perspective of women living with HIV. And one of the things that’s unique about your approach is that we often disaggregate the people who suffer with the disease from the disease itself, and we end up talking about the disease rather than the people. And your approach does exactly the opposite. You focus on the people rather than the disease. Why did you choose that focus? And you know, from there, what has it illuminated about how we understand people who suffer this disease and the phenomenon of the HIV pandemic itself?
Prof. Celeste Watkins-Hayes That’s a great question. Abdul. And first let me say, I’m really excited for this conversation. Thank you for having me on the show. I am a sociologist who uses interviewing methods extensively in my research. I think it is critically important to listen to the voices of those most affected by a particular social experience or condition. So when I think about studying the HIV epidemic, I think some of our most important lessons to be learned come from talking to the people who are living the experience, who are navigating the health care system in the context of living with illness, and who are in some cases getting involved in the activism around a particular illness and the conditions that fuel an illness. So for me, I think that it gives you a really good understanding of the intersection between lived experience and structure, the environment that shapes our world.
Dr. Abdul El-Sayed: What are some of the key insights that your approach to understanding, particularly women, particularly marginalized women, people of color, living with HIV? What has it shown you about the interaction between people living their lives and the disease that they are living with? What has it brought out in them? What kind of experiences has it shaped in them, and how have they responded or engaged in that particular way?
Prof. Celeste Watkins-Hayes Well, I think the useful thing about this approach is that people are often able to tell you stories and explain things that allow you as an analyst to connect it to institutions and connect it to systems. So I’ll just give you an example. I interviewed a woman by the name of Patricia Nalls who runs the Women’s Collective in Washington DC, an HIV advocacy organization. And part of her telling her story about realizing that she was living with HIV, having to navigate the question of the death of her partner and being a sudden widow—because he passed away of AIDS-related complications or stage three HIV—having to think about motherhood in that context, because she was raising two girls at the time, and then navigating the HIV world, having to find a physician who understood the needs of women living with HIV and their unique, sometimes unique symptoms, navigating the HIV support group network in terms of trying to gather social support to be able to address and confront the stigma that one is facing when one is—often experiencing an HIV diagnosis, we know that a lot of stigma unfortunately still comes with it. And her walking into support groups and seeing no women there. So those individual experiences help us to understand the role of women, for example, in the epidemic, how they often found themselves marginalized within a movement of people who had been marginalized, how they found that their services and unique needs were not always being attended to. And then you see how that gives way to a great deal of organizing on the part of women living with HIV to make sure that they are included in the clinical trials, to make sure that they are included in the programing for people living with HIV, to make sure that their voice is represented in the national and global conversation around this pandemic. So part of the approach of listening to individual stories is that you understand how it affects so many other things, whether it’s health care, access or support services or people’s abilities to navigate a really serious health condition.
Dr. Abdul El-Sayed: I really appreciate that insight. When I was serving in the city, one of the things that I’d always tried to do was put myself in the shoes of the folks that we were trying to serve, because only then do you appreciate how the system creates a set of roadblocks, what the lived experience of those roadblocks is, the system is. And part of our goal was to center a lot of our institution around taking down those barriers as people saw them, rather than being bureaucracy-centered and asking what would be easiest for us, it was really about asking, OK, what would be easiest for the people we’re trying to serve? And oftentimes institutions that are built that way look radically different than the ones that are built around the needs of some bureaucrat. And you know, it’s like all of these departments don’t really make sense because most people don’t differentiate their lives in terms of the facet of government that they’re dealing with. Rather, they ask I want to get from point A to point B, what is the way to do that? And so I really appreciate that that story-centered approach. I want to zoom in. One of your participants said something really profound, and I’m going to quote it here, “if it weren’t for HIV, I would be dead.” Can you explain that? What did what did she mean by that? And how do we think about that?
Prof. Celeste Watkins-Hayes Yeah, that’s a really profound statement, right? That was stated by a woman named Dawn, who I interviewed several times through the process of writing the book “Remaking a Life: How Women Living with HIV Confront Inequality.” Dawn was about 35-years old and made that statement. And when someone says to you, If it weren’t for HIV, I’d probably be dead, it’s a very jarring statement. How could an illness responsible for the deaths of over 32 million people around the globe be credited by Dawn for helping to save her life? And when you learn more about Don’s story, you recognize that she was navigating what I call a whole host of injuries of inequality. Her health status had suffered from years of benign neglect in terms of lack of access to health care, largely using emergency rooms for her primary point of contact for health care services, living in a community that had experienced systematic economic disinvestment. So she and the people in her life had very few job prospects in terms of finding employment that could lead to a livable wage. So the drug economy for her became a tool of economic support. She was also grappling with her own history of personal trauma. She was a survivor of childhood sexual abuse, was dealing with a serious substance use issue, and was also homeless for a long part of her life. So that obviously, all of those factors obviously have a huge impact, a negative impact on her health. When she learns that she’s HIV-positive, for years, she doesn’t necessarily, it doesn’t really affect her life. She’s diagnosed but not given much information. And this is in the early ’80s where doctors didn’t necessarily have a lot of information about HIV, and they certainly didn’t have it for women living with HIV. And she was also in the crisis point in her life for all of the reasons that I described. But when she eventually what I call ‘comes into HIV care’, when she finds a facility that is able to respond to not just her HIV, but all of her injuries of any quality, helping her deal with the afterlife of childhood sexual trauma and getting her access to mental health services, helping her find housing support so that homelessness is not a constant environmental and personal stressor, helping her deal with her substance use issues—when she comes into care, she enters into a facility, a housing facility, called St. Mary’s, for women living with HIV who are also grappling with addiction. And St. Mary’s helps her find this access to a therapist. It helps her get housing, it her find a job, it helps her find access to a support group. And it really creates a network for her, a support structure that allows her to not just eventually die of, but to live with, and eventually thrive despite, her HIV diagnosis. So what Dawn is saying when she says, I it weren’t for HIV, I’d probably be dead—is that if it weren’t for the HIV safety net, if it weren’t for the HIV community, if it weren’t for access to medical and mental health and housing and other economic support that I long needed but wasn’t plugged into, I’d probably be dead. So Dawn’s story really highlights the importance of safety nets for all of us. And it really highlights the role that the HIV community has played in building a holistic safety net, thinking about housing as health care, thinking about access to substance use services as health care, thinking about economic sustenance as health care. And yes, thinking about the actual HIV diagnosis as health care. So part of what I try to do in Remaking a Life is to point out how the HIV safety net in its best forms and it’s in its most functional forms—obviously, there are places where there’s gaps and we can talk about that—has nevertheless created a model that I think is useful for all of us to think about in terms of what does the safety net look like and how can it be lifesaving for people?
Dr. Abdul El-Sayed: You know, you’re really speaking to the fact that the diseases that we choose to take on, the choice to take them on is somewhat arbitrary. You think about the fact that we are, we build a level of intervention around HIV, which is a great thing, but we then systematically neglect all of the societal illnesses that, as, you talked about them around—what was the term that you used? It was a really good term, the uh—
Prof. Celeste Watkins-Hayes Injuries of inequality.
Dr. Abdul El-Sayed: Injuries of inequality. Thank you. We choose not to build around these issues. And so, you know, you think about somebody like Dawn and the fact that she gets the disease of HIV then opens up a series of of avenues for intervention on all of those other injuries. And the fact that we’re not thinking about society that way leaves so many people behind and I think the story really does capture exactly that. In America, it’s almost like if you get HIV, you actually have a better shot at getting solutions to a whole bunch of other problems, which asks the question: Why are we A, allowing those problems to be created in the first place. And B, why aren’t we doing anything about them?
Prof. Celeste Watkins-Hayes Absolutely. And that’s another one of the ironies that I point out in my book, the fact that it took an HIV diagnosis for Dawn to have access to services that she needed in order to survive. So why did the fire have to be raging before we installed the fire extinguisher? That’s the first irony in the book. And then the other piece of this is HIV has a very unique history in terms of how that safety net came to be. And what you’re gesturing towards is our disparate responses based on who we perceive to be most affected, and whose activism we respond to. So the reality is that there’s quite a bit of diversity as it relates to the HIV advocacy and activism world, but in terms of the face of HIV activism, it has typically been the face of a middle-class gay white man. And for good reason. That community really saw HIV as an existential threat. When you think about organizations like the Gay Men’s Health Crisis and the San Francisco AIDS Foundation and Act Up really mobilizing very early on to understand that HIV had great potential to be, and was subsequently, devastating for the community, and therefore mounting a really critical activist response, an activist response that was rooted in sexual marginalization, specifically rooted in the homophobia that the community was experiencing, but also being able to leverage their privilege on the basis of being a constituency that was perceived as mostly white, mostly male, and often middle class. What my book highlights is that that is a part of HIV activism, but it’s not the only part. There were also women, there were also people of color, there were also transgender people that were involved in the struggle for rights and services. But because our cultural image was of that, you know, those very searing images of people acting up on the Washington Mall and chaining themselves to radiators in government buildings and all of the visuals that we see in a film like How to Survive a Plague, that experience of both severe marginalization, but also some unspoken privilege, helped to create the foundation on which the HIV safety net is built. So I write about the way in which access to dollars, access to the ear of political officials, access to be able to use the media to help shape hearts and minds and to educate the public on not just HIV, but the LGBTQ community that was disproportionately impacted, all helped to create a level of activism that we still see in terms of the HIV safety net that exists to this day. So part of what you’re talking about is it matters who’s doing the activism and how they are viewed and what level of access to privilege they’re able to call upon, even in the face of also navigating huge inequities and marginalization on the basis of other aspects of their identity.
Dr. Abdul El-Sayed: Yeah, that’s extremely powerful, and, you know, I think it is, you know, to your point, it’s not that the folks who have become the face of the movement to take on HIV were not marginalized, it’s that there are so many other people, even within the group who has been affected by HIV that are more marginalized in some respects. And that we have to understand that there is a broader set of communities that have been affected by this disease who have shown up and fought in their own way. And I actually want to ask you about that. You talk a lot about the ways that the the people that you’ve studied have found a real resilience in their activism and their advocacy. Can you tell us a bit more about that and what shape it’s taken and some of the ways that it’s reshaped society for all of us?
Prof. Celeste Watkins-Hayes Absolutely. So that’s the power of the HIV community. In building the safety net, there were some concrete priorities in terms of access to health care, access to lifesaving drugs, access to economic support when needed, and access to social support. The idea that people living with HIV needed a support system not just to navigate the disease, but to navigate the discrimination and stigma that they were also grappling with as people living with HIV, but also often coming from marginalized communities, LGBTQ communities, Black and brown communities, women, et cetera. And particularly when we think about people having intersectional statuses, you can imagine what conditions are like for people who have multiple statuses that put them in the minority. But the other thing that the HIV community does very well is that it gives people an on-ramp to political and civic engagement. So very much this idea of use your own story to educate others, to eradicate HIV or to prevent further transmission of HIV, to fight the stigma, but also use your voice for political gains, to be able to advocate, to be able to speak truth to power about what is necessary for your community. So what you’ve seen is as the HIV safety net works together in this very kind of broad-based multicultural constituency, it’s training people on how to be activists. It’s training people how to advocate. And you end up seeing HIV activists move into things like criminal justice reform and using those skills there. You see HIV activists very involved in conversations around COVID-19. You see HIV activists involved in conversations around drug discovery, and how we roll out new drugs, how we execute clinical trials, etc.. So you see the ways in the HIV community they’ve used their voice and their prominence to be able to shape other kinds of conversations. The passage of the Affordable Care Act, the ways in which HIV activists were able to talk about the power of expanding health care and what that means for people who are in need. So we have that community to thank for a lot of different conversations, even if we don’t recognize it as HIV activism at work.
Dr. Abdul El-Sayed: Hmm. You know, it reminds me of the famous King quote, “injustice anywhere is a threat to justice everywhere” and it’s almost like the on-ramp of taking on the injustice of frankly, lack of scientific attention and/or care or health care for people living with HIV created a space for advocacy, even beyond to take on those injuries of inequality that that you talked about. And as marginalized as a gay white man with HIV might be, you can imagine the multiple levels of marginalization of a Black trans woman living with HIV, and the recognition that the will, the capacity, the effort to take on the injustice of HIV then creates a capacity, a will and an effort to take on the injustices of transphobia and of misogyny and of racism as they manifest themselves even beyond HIV. And that really is a really powerful point. And, you know, a recognition that the fight for justice and the will to stand up to injustice does sort of transmogrify itself in ways that are really quite powerful. I want to move to the pandemic that that’s on all of our minds right now, which is COVID-19. And I want to ask, how has the COVID-19 pandemic affected the communities that that that you’ve interacted with in your work?
Prof. Celeste Watkins-Hayes That’s a great question. And when we started talking about COVID-19, a lot of people wanted to draw comparisons between the two epidemics. And in some ways, there are some similarities. Both were mysterious illnesses with this kind of ticking time clock. You know, real concerns around the federal government response and critiques about how that was playing out. The similarities in terms of a crisis within a crisis, so recognition that while both are infectious diseases, they were disproportionately impacting marginalized communities. But some differences as well in terms of obviously transmission routes, how one acquires COVID is very different from how one acquires HIV. And we didn’t quite see the political mobilization around health activism that we saw with HIV. And I think there are probably a couple of reasons for that. Number one, you know, people living with COVID and navigating COVID, there was so much devastation in terms of people’s physical ability to mobilize when they were also grappling with COVID. Also, the fact that we were in ‘shelter in place’ and lockdown. So for a long time, people were being, were nervous to be out in the streets and be activists, and we really didn’t see kind of a burst of—we saw bursts of activism, not necessarily around COVID, but around Black Lives Matter in the wake of George Floyd’s murder and the murder of others. And often times our polarized political environment really made it difficult for hearts and minds to be changed, and for people to be open to hearing about the experiences of people grappling with the particular illness and then to change their behavior as a result. So nevertheless, we still were worried about within COVID what was happening with people living with HIV. Right? So a couple of different concerns. Number one, would people with HIV contract COVID at disproportionate rates? We have found that that has not necessarily been the case. And in fact, people with undetectable viral loads when it comes to HIV are no more susceptible to COVID than any of us. So in the sense that that early concern of what is this going to do to the HIV population and this is heightened risk—the science kind of suggests that that wasn’t the case. But what we were worried about is how would people maintain access to care and to the HIV safety net? The HIV safety net assumes, you know, access to one’s physician. We moved to, many places moved to telehealth and telemedicine. Well, are people going to have the resources to be able to do that, to be able to have the Wi-Fi and the cellular minutes and the access to computers and the knowledge of how to use the computer to stay within care? So we’re worried and we’re seeing, you know, some concerns about drop-off in terms of people who are living with HIV, who had a pretty good relationship or even had a more spotty relationship to health care, seeing a drop off in terms of it being harder for them to get access to care. That was definitely a concern and in the early days of the pandemic, we did see that drop-off happen. The other thing that we were really concerned about was people who would delay treatment for HIV, for fear of going into a health care setting. And you know, as we have these waves and spikes of COVID, we have to remember every time we have a spike of COVID, it taxes the health care system, it gives people yet another reason to not come into a health care facility, to not come in and get tested, to not come in and see their physician, to not come in and get their viral load checked. So certainly, we worry about people not consistently engaging with the health care system because they perceive it to already be so taxed. And then the final thing that we worry about is so much of HIV care is about connecting people to other folks who are living with their experience, whether it’s through support groups, whether it’s through case management—part of responding to a highly-stigmatized illness is putting people in community and in conversation who are dealing with the same illness. And when we were grappling with shelter in place and the subsequent social isolation, we worry and continue to worry a great deal about people who aren’t able to go to support groups, who are still nervous about being in physical spaces with other people and are therefore still somewhat in isolation. So all of those things just kind of layer pandemic upon pandemic in ways that we’ve got to be really responsive to. And I’ll just say one other thing the political momentum around ending the HIV epidemic, I think has been, has taken a hit in the wake of COVID, in the sense that we were experiencing a real strong conversation around how can we end the HIV epidemic for good in places like the United States that are well-resourced? We have the biomedical tools, we have tools for people who are living with HIV by way of antiretroviral therapy. If you’re living with HIV, you’re on antiretroviral therapy, you’re taking it consistently, your viral load is undetectable, you can’t sexually transmit, so there’s a real opportunity to stop HIV transmission through that medical breakthrough. And then on the other side of the spectrum for people who are HIV negative, we’ve got tools now in terms of pre-exposure prophylaxis, PREP, that prevents HIV transmission. So there was a real momentum building around we’ve got the tools available, now we just need to make sure that people get connected to the tools, and we need to break down those barriers and all of the institutional problems that you described that prevent people from getting access to something that exists. A lot of the attention and focus shifted to COVID-19, and rightly so, obviously. So what we’re trying to think about now is how do you have that balance? How do we, as we move into, hopefully, a phase where COVID-19 is endemic, how do we balance our shift, our focus, our shift our attention so that yes, we’re being attentive to COVID-19, but we’re also revisiting the conversations around other infectious diseases like HIV, and really making sure that we put that foot back on the gas as it relates to ending that epidemic as well.
Dr. Abdul El-Sayed: Hmm. Yeah, that’s a really important point. And, you know, just to echo the point about the kind of movement that this pandemic frankly did not create, you know, you think about what are the impacts of the fact that though we know that COVID has disproportionately affected people of color and other marginalized groups, that the experience of COVID was pretty far-ranging. And, you know, even if people didn’t get sick, they still experienced the pandemic in a particular way. There was a sort of popular meme early on in 2020 that we’re all in this together, even if a lot of people are a lot more in it than that than others. And in some respects, it’s ironic that because it was so widespread, it actually mitigated the capacity to outline the particularities of who was infected most and to create a sort of impetus for engagement around it. And I worry that we are going to have suffered a global pandemic that’s taken nearly a million lives in this country, disproportionately Black and brown people, and that it will not have moved the needle on the conversation about the fact that we still yet lack universal health coverage in this country and that we have a broken, dis-junct public health system. And you know, it’ll be, all of that will be subsumed by a broader debate about, you know, faux personal freedoms, about whether or not you can wear a mask or the government could tell you to get vaccinated in the middle of a pandemic. So that is, that is quite worrying. But I do think the point that you made about the ways that this has sort of taken away from the attention that we’ve been paying to more enduring pandemics, I think is a real worry, and is something to continue to pay attention to. We’re really grateful to you, Professor Watkins-Hayes, for joining us today, for sharing your research about people living with HIV, particularly Black women with HIV, and we really appreciate the insights that that’s yielded. I want to finish just on on a final note, I’m rather confident that in the experience of listening to people’s stories, that there’s a kernel of hope that that you get. And I’m wondering if you can leave us with some of that hope in a time like this?
Prof. Celeste Watkins-Hayes Absolutely. Well, you know, the last story that I’ll share is the story of Katrina Haslett. Katrina was a woman living with HIV, incarcerated, who upon her release, becomes an activist. And at the time and Katrina’s life, and this was in the 1990s, the way that we defined stage three HIV, or AIDS, was based on symptoms that were disproportionately found in men. So there were many women who had stage three HIV or AIDS but were not being diagnosed as such, and were essentially dying before they got the formal diagnosis. Why does this matter? Because it meant that they did not get access to the services that were designated for people who had a diagnosis of AIDS. There were resources, access to medications, access to social services, access to a whole host of things that, because the resources were limited, were limited to people who had an AIDS diagnosis. So for many, many women who had all of the symptoms and in fact pretty much did have AIDS, or stage three HIV, because they weren’t designated as such, they essentially died without access to those resources. Katrina Haslett partners with Terry McGovern, who is the founder of the HIV Law Project, and other people were working on this too—the women of Act Up, the Act UP Women’s Caucus, and a number of other activists were very instrumental in suing the federal government. And essentially getting the federal government to change its policy on how it defines an AIDS diagnosis to include more of the symptoms that were found in women. So when I get discouraged, I think about how this group of women who had a lot of struggle and a lot of things working against them, essentially took on Goliath. And through winning that lawsuit, were able to open up access to services for thousands upon thousands of women, and were able to help us better understand what HIV looks like in all people, not just one group. So I try to think about situations like that even in the wake of our very difficult moment in our country’s history as we navigate the COVID-19 pandemic. And my hope is that the ways in which people united during the height of HIV activism and the long gains and wins that they’ve been able to make, and the struggles that they continue to have around how to make sure that they are fully-inclusive, are lessons that we’ll continue to keep in mind and try to keep pushing as we deal with COVID-19 and other pandemics that really have shaken us to our core, not just in terms of the actual pandemic, but the politics around the pandemic. So I’m going to try to stay hopeful, and I hope that others will look at a book like Remaking a Life and be inspired and encouraged, for people who during the darkest days of the HIV epidemic, nevertheless kept the faith and kept pushing for change.
Dr. Abdul El-Sayed: We really appreciate that note and on that, well, thank you so much for joining us. That was Professor Celeste Watkins-Hayes sharing her insights from a body of work on Black women with HIV. Thank you so much for joining us.
Prof. Celeste Watkins-Hayes Thank you so much for inviting me to be on the show. Great conversation. Appreciate it.
Dr. Abdul El-Sayed, narrating: As usual, here’s what I’m watching right now. Deaths to COVID-19 are down by double digits, with many states and municipalities and school districts easing COVID restrictions. And the CDC is debating if it may be time to change federal guidelines. This was CDC Director Rochelle Walensky last week:
[clip of CDC Dir Rochelle Walensky] We are looking at an overview of much of our guidance, and masking in all settings will be a part of that . . . we want to give people a break from things like mask wearing when these metrics are better.
Dr. Abdul El-Sayed: The CDC is increasingly out of step with state and local governments as they continue to drag their feet on alternative recommendations. Remember, the current recommendations were changed during the Delta surge, when COVID was substantially more severe than Omicron has been. At the same time, though, Director Walensky is right to remind us that requirements are not recommendations, that even if cases are low and states are dropping requirements, recommendations that you wear your mask if you’re feeling ill or in highly-crowded public settings, they remain appropriate. The CDC is also smart to make sure that the guidelines that they set are consistent with the potential that still exists for yet another surge, that they can scale appropriately if that happens. Although let’s all hope and pray we never get there. But come on now, let’s get on with it already. It doesn’t help the public trust in science and scientific policymakers when they differ so widely. In New York City, 1,430 people who work for New York City government—that’s less than 1% of its workforce—were fired for failing to be vaccinated. That should remind us that mandates work! 99% of New York City’s workforce did what they needed to do, and when faced with the choice between doing what’s in the best interest of the public good or losing their job, people made the right decision.
In good news, a woman became the third person to be cured of HIV by cord blood transplant. Her case was as scientifically fascinating as it is inspiring. Before I explain this, remember that HIV is an infection of the blood cells, because what makes the case interesting is that she also had had leukemia, which is cancer of the blood cells, for which she was treated with a round of chemotherapy, which destroyed her ability to make new blood cells in the first place. She received two treatments. One was blood from a close relative to hold her over for the main treatment, which was umbilical cord blood from a donor who had a mutation that made them immune to HIV. She left the hospital 17 days later, both cancer and HIV-free. This approach opens a whole new line of thinking about how to cure HIV with HIV-resistant cord blood.
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