Shownotes Transcript
Support for KQED Podcasts comes from San Francisco International Airport.
Did you know that SFO has a world-class museum? Get ready to be wowed by art, history, science, and cultural exhibitions throughout the terminals. Learn more at flysfo.com slash museum. Switch to Comcast Business Mobile and save hundreds a year on your wireless bill. Comcast Business, powering possibilities. Restrictions apply. Comcast Business Internet required. Compares two unlimited intro lines and lowest price 5D plans of top three carriers. Tax and fees extra. Reduce speeds after 30 gigabytes of usage. Data thresholds may vary. ♪
From KQED. From KQED in San Francisco, I'm Alexis Madrigal. When the first AIDS life cycle ride rolled down the California coastline in 1994, AIDS was the leading cause of death for people aged 25 to 44. Today, for Americans with resources, HIV is no longer a death sentence and can be treated. This weekend, the last AIDS life cycle ride will cross the finish line.
So we're going to take this moment to look back on the strides that have been made in AIDS-HIV research and explore the impact that federal funding cuts to healthcare and humanitarian aid will have on the battle against the disease. It's all coming up next, right after this news. Welcome to Forum. I'm Alexis Madrigal.
1994 was a turning point for the HIV epidemic. After causing so much pain and suffering in the gay community in the 1980s with remarkably little help from the powers that be, awareness and concern about HIV AIDS had fully saturated the mainstream. The movie Philadelphia, the play Angels in America, Pedro Zamora on the real world AIDS
But despite the increasing attention, the disease continued to kill so many people here in the Bay Area and across the country. It wouldn't be until 1995 that the first protease inhibitor was approved by the FDA, eventually ushering in a new era in retroviral therapies.
It was in those circumstances that the first AIDS lifecycle ride, then known as the California AIDS Ride, was born. Over the last 30 years, each cyclist has ridden hundreds of miles down the California coast, and collectively they've raised $300 million for research. This weekend, it will come to an end.
Joining us to talk about the long path from the early 1990s to today, we're joined by Jeff Shee, longtime AIDS activist, first openly HIV positive member of the San Francisco Board of Supervisors, and a former board member at the California Institute of Regenerative Medicine. Welcome. Thanks, Alexis. Good morning. Thanks for being here. We are also joined by Dr. Monica Gandhi, infectious disease expert and professor of medicine at UCSF. Welcome.
Thank you. And we've got Jen Cates, Senior Vice President and Director of Global Health and HIV Policy with KFF. Welcome, Jen. Thanks. Good to be here. So, Jeff, you know, as we noted in the introduction, in 1994, AIDS was the leading killer of people aged 25 to 44 in the United States.
You know some of that from personal experience. What's it like hearing that statistic today? And what was it like for you in the community in 1994? Well, it was frankly scary. You know, I'd lived through the beginning of the epidemic. I came out right before the first cases were revealed. I was living in Austin, Texas.
I can still remember a dance floor, which, you know, in 79 and 80 was filled with a bunch of young people like me. And by the mid to late 80s, I'd look around and I could literally see the people who had been lost, all in their late teens, early 20s. And it was devastating. And then you fast forward to the 90s and there was a huge community response. You know, ACT UP had formed and was so heroic there.
But things were really grim. And I had moved to San Francisco and you would walk through the Castro and you couldn't help but notice people who were on crutches, who were young people, you know, and it was a really difficult and challenging time. You know, Jen, you were working in the community, too, in the late 80s and the early 90s. How did that work lead you to where you are today?
Yeah, so hearing Jeff speak definitely brought me back. In the late 80s, not to totally date myself, I was just graduating college and it was really friends of mine that were affected. And I just felt like I had to do something and became involved in doing community work.
organizing where I lived on the East Coast to try to get more of a local response to HIV. And that just solidified for me that I wanted to devote whatever my career was going to end up being to trying to make things better for people living with and affected by HIV and more broadly improve health.
health care. And so at some point into that journey, and actually it was 1994, I went to grad school to get a degree in policy so I could come to Washington and work on policy issues. What did you hope you'd be able to do?
Policy-wise.
There wasn't a huge federal response. And I felt like, you know, I could hopefully make a difference by working on policy in some way to highlight what kinds of policies could be addressed or could be provided or instituted that could make things better. What were the challenges in the system?
nationally and at state level. So it was a little bit amorphous as a young person, but that was kind of my thinking at the time. And actually, that's what I do. I analyze policy. So it actually ended up being my career. Monica, you were a medical student who was moved by the stigma against people and patients with HIV AIDS to study it further. Can you tell us what the early 90s were like for you?
Yeah, I mean, in the early 90s, I was in medical school. And I wanted to be an HIV doctor since I was maybe 11. And that was because, yeah, I grew up in a very conservative state and I wanted to, I was surprised by stigma. I just like didn't, truly didn't understand it, why you would judge people for something they couldn't change. And I was very moved by the early reports of HIV, but I was young. And then I went to medical school and
in Boston and then I came to UCSF because I wanted to be where the epicenter of the epidemic was. So that meant being in a place where I could see a lot of HIV and learn it. And it was really sad because I came in 1996 at the beginning of the year as an intern
And half of the patients that we admitted at San Francisco General Hospital had very severe infections and were very sick. And there were men dying of AIDS, they were mostly men. And we would tell their families that they were gay sometimes for the first time, that they were living in San Francisco, that they were dying. And then by the end of the year, and that was the year when highly active antiretroviral therapy came out,
People were rising from the dead. It was incredible. It was amazing to see advances in therapy. They were hard to take, but they did do well. And now we're in a state this many years later where they're very easy to take medications. We even have injectable ones.
We're very interested in the medications, but they're not getting to everyone. And so I've been working on that ever since at San Francisco General, working on access to therapy and prevention. - Jeff, what was that like for you watching people basically rise from the dead?
Well, I always remember I was working on the Roberta Actonburg for Mayor campaign in 1995. I don't know if people remember her, but she was the first LGBTQ person to be approved by the U.S. Senate. And she had a big dust-up with Jesse Helms, a really fabulous, enormously historic individual.
And within the campaign, we had a lot of people with HIV/AIDS volunteering. And a lot of them were quite sick and did look like those people I described earlier. Very emaciated, looked 20 years older than they actually were.
Fast forward a year later, 1996, I'm president of the Harvey Milk Club and I'm campaigning and politicking in the casserole all the time. And from time to time, somebody would walk up to me and give me a hug and I'd be like, "Who are you?" And they would be this robust, healthy young man, which was always nice to get a hug from, by the way. And they had had the medications. They had literally experienced what we called then the Lazarus effect.
And it was really quite stunning. You know, people were also, you know, Monica mentioned that these medicines were hard to take. I mean, did you also see and hear about that in the community? Well, I experienced it. I was diagnosed in 97. And one of the drugs was Crixivan, which used to give something called kidney sludge as a side effect. There was Ritonavir, which people almost, you know, literally wanted to vomit after they took it.
I started on nilfenavir.
And now, Phenavir caused diarrhea within 30 to 45 minutes of taking it. And my muni rides to work were like, don't be late, muni, don't be late. And I can't tell you, there were times I had to go back home and change. And then there was D4T. They were these D drugs that were really potent but caused in almost everybody who took them peripheral neuropathy. So to this day, I cannot feel my toes.
Monica, can you tell us a little bit more about how these drugs improved? Yeah, I mean, that was it. Like, nalfenavir was the diarrhea drug. Crixivan was the kidney stones drug. They were incredibly hard to take. People would pull over, like, throwing up. It was so hard to take. And so we would actually go off and on the drugs even for a while because we didn't want people to be on them. They were so toxic.
And we did lose people who just couldn't manage them. But then they got better and they got better starting in the late 90s and early 2000s. And we even got to the first single pill combination for HIV in 2006. That was one pill once a day where multiple drugs were put in the regimen. And that was amazing, that first single pill combination. But that was also hard to take. So they kept on getting better and better. And now there are single pill combinations
And they can be quite side effect free. But I always say to a patient when they're first diagnosed, I said, if you have a side effect, that is totally my fault. We have so many options in this country. So we will work to find you another one. And then in 2021, we actually got shots for HIV medications.
which is incredible for some because we've been working at least at San Francisco General Hospital really hard at 186 to give them to people who are experiencing homelessness or substance use or mental health concerns because it's hard to take that pill every day on the street.
And we've seen really amazing outcomes where people suddenly don't have to think about one thing, which is HIV. They just come in for a shot every two months and then can go about their day, which can be really hard if you're living with all these challenges. So that's where we are. And then we'll talk later about the fact that all that seems to be being taken away and it's unbearable. It's unbearable.
Jeff, talk to us a little bit about events like the AIDS ride. I mean, started 31 years ago. What was its role within the community, you think? Well, both the AIDS ride and the AIDS walk were tremendous opportunities for the community to come together and joining in the fight.
And I think it really is hard to underestimate the community response. And what was really unique about San Francisco, unlike really many other places in the country, even the world, is when AIDS first hit...
and was devastating, and there was a stigma, and everybody was freaking out. Actually, the whole city came together. You know, Dianne Feinstein, Willie Brown in the legislature, you know, Nancy Pelosi. San Franciscans as an entire community, not just the LGBTQ plus community, ran towards that fire. We did this together. It is one of our city's finest moments. Mm-hmm.
We're talking about the progress that's been made against HIV AIDS in the last 30 years. We celebrate the end of the AIDS life cycle ride, which rolls for the final time into Los Angeles this weekend. We're joined by Jeff Shee, longtime activist, first openly HIV positive member of the SF Board of Supervisors, Dr. Monica Gandhi.
infectious disease expert and a professor of medicine at UCSF, and Jen Cates, senior vice president and director of global health and HIV policy at KFF. And of course, we want your memories of this time, 866-733-6786, forum at kqed.org. I'm Alexis Madrigal, staging for more right after the break.
Support for Forum comes from the University of San Francisco School of Management. Celebrating 100 years of partnership with the Bay Area business community, the USF School of Management connects students to the city's vibrant culture, hands-on internships, and a wealth of career opportunities.
where AI and sustainability are integrated into every facet of business education, and where students bring innovation, ethics, and entrepreneurial leadership to a planet in need. The University of San Francisco School of Management. Change the world from here. Support for KQED Podcasts comes from Earthjustice. As a national legal nonprofit, Earthjustice has more than 200 full-time lawyers who fight for a healthy environment.
They wield the power of the law to protect people's health, preserve magnificent places and wildlife, and advance clean energy to combat climate change. Earthjustice fights in court because the Earth needs a good lawyer. Learn more about how you can get involved and become a supporter at earthjustice.org.
Welcome back to Forum. Alexis Madrigal here. We're talking about the progress made against HIV AIDS in the last 30 years. We're joined by Jen Cates, Senior Vice President and Director of Global Health and HIV Policy at KFF.
Dr. Monica Gandhi, an infectious disease expert and professor of medicine at UCSF, and Jeff Shee, longtime AIDS activist, first openly HIV plus member of the San Francisco Board of Supervisors. We also want to hear from you. Are you participating in the AIDS Life Cycle Ride? Have you been a participant or a volunteer? What are your memories of participating?
Thank you.
Jen, why don't we talk a little bit about sort of the evolving kind of policy response, the thing that you really wanted to get involved with? When did we start to see changes? You know, we heard from Jeff the way the city of San Francisco was able to pull together and help people who were suffering. But what about at the sort of national level?
Yeah, I mean, I think one view I try to have, especially now, is that you have to take the long view on some of this. So there were fits and starts and lots of cycles of progress and then setbacks over the course of now, you know, more than 30 years. But the federal response certainly started early.
in the 80s with some members of Congress who really felt they came from districts or states where there was a large impact, really felt that they had an obligation to address this. So they helped bring that message to Congress. And, you know, but it was the Reagan administration initially, and that administration did not really want to focus on HIV. So it wasn't until, I'd say, the end of that first decade where we really started to see the creation of large federal programs,
The Ryan White HIV/AIDS program, which is the nation's safety net for people with HIV who are low income and don't have insurance or limited insurance. The HOPWA program to provide housing support.
And so on. And so some of these big evolution came started to come about where we had a response. And I think that, you know, helped to change the the way people saw HIV. And then, as we've all been talking about, when you had treatments that just completely reversed the death, you know, death rates went from, you know, leading cause of death, as you said on the top to.
just not anymore for many people. And today we can say that most people with HIV who are able to access treatment can live a
normal lifespan. I mean, that's incredible and not something that I really anticipated at the time. But it really wasn't just the federal government and the traditional policymakers. It was always the intersection and the interaction with the community. That was a defining part of the response to HIV that I think was unique. It now is much more common in other movements and other areas of health, but it was pretty unique at the time to have community be so
embedded in trying to make that change and get policy responses. Certainly, San Francisco is at the forefront. Monica, how did you feel the community activism as someone who is working on the sort of medical side of this problem? Yeah, I mean, it's such an incredible field because I don't think there's any other field where
the community and activists and clinicians and researchers march together and that actually can affect great change so in cancer there's colon cancer there's breast cancer there's different types of cancers it doesn't come together like this like we are all on the same page and we always act together and that means that
things do change. So, I mean, the reason that the medications got fast-tracked and the reason that HIV research got fast-tracked at the NIH is because of all the activism in the late 80s and early 90s at the FDA and the NIH. And, you know, ACT UP was a huge part of that, wrapping Jesse Helms' house in a big condom. These are very effective techniques. And so we're just... It's why things move, and I think it's why...
even during this time, I think things are going to move better because we all come together. Yeah. Jeff, do you think it's that sort of unique partnership that kept this a bipartisan issue for a long time? It's almost hard to imagine how bipartisan this issue has been given the way our world is polarized now. Well, it is kind of stunning when you listen to Jen and she mentions, you know, the Ryan White Care Act, which was signed by the first President Bush and
The Americans for Disability Act, which is really important given the stigma that protected people with HIV from discrimination, also signed by Bush. And then the second, President Bush signed PEPFAR, to everybody's surprise. And I think what happened is this, people all began to know people. And remember, Ryan White was a kid, a straight kid who, you know, they wanted to burn down his house. He endured incredible stigma.
in Indiana. And his mother was one of the most powerful advocates for AIDS care and AIDS research. So the thing about it is that, and I don't know why we lost this sensibility in COVID, but infectious disease ultimately affects everybody. And we have to move in a public health fashion to address it collectively. Yeah. Let's bring in some folks with their experiences. Barry in San Francisco, welcome.
Hey Alexis, it's nice to talk and thanks for taking my call. Thanks for doing the program. So as a young immigrant, just finished graduate school, I was from Ireland, I wrote my master's thesis at SIUC in Illinois, AIDS, Facts, Fallacies and Fears, Sarah Prevalence Research and the Dilemma between Public Health and Individual Rights. And I did it because this
horrible thing was affecting people around me, my friends and my community. And I came to San Francisco and got a job at Haydash Free Free Clinics, just a gig to do a brochure for them for their drug detox. And
They were really generous in how they gave me time to really look at what was happening. And out of a few weeks' worth of work, I discovered that a brochure would have looked great and would have fulfilled the Northern California grantmaker's requirement, which was where the money was from, and ended up telling them, well, a lot of your patients don't read beyond...
the fifth or sixth grade level, so let me do something different. And I hired a phlebotomist who ended up having a great reputation on the street with IV drug users and brought many, many drug users into the clinic, and we began testing them, discovered that they were
you know, in great numbers, HIV positive. And that allowed me to go back to them and say, hire me and I'll go get money for the clinics. And I competitively wrote grants applications, both at the local city level and
and got them their HIV test counseling program and then got a state and then a federal grant, a demonstration grant that transformed the clinic in a remarkable way. It allowed me to hire doctors and nurses and outreach workers
And we formed an agreement with a hospital across the panhandle, St. Mary's Medical Center at the time. And they had an HIV and AIDS program. And we had a medical drug detox. And we formed an agreement with them that allowed their staff to come over and learn medical detox.
and allowed the clinic staff to go over and learn HIV care. And I feel very proud about this, and I hope I don't sound like I'm boasting, but I set up the HIV integrated care program in Haight-Ashbury Free Clinics in the drug detox. And probably some of the people on the panel will remember I was also involved
a co-maker of a very famous but also notorious poster that had two young men draped in the American flag, and it said, Life, Liberty, and the Pursuit of Happiness. And they held a con in the box.
Wow. Barry, man, you know, Jeff, this is really to your point that people in San Francisco, thank you so much, Barry, for sharing that history with us. People were really called to this emergency, right? I mean, just kind of wanted to help and threw themselves into it. Well, I loved Barry's story. And I remember that poster that was so hot. I mean, it was super sexy. And it was everywhere. It was ubiquitous. And it's very interesting poster.
in the way that in communicating with the community, we really went straight to it, so to speak. Not necessarily so straight, but the outreach that was done around prevention really talked to people where they were. And I think a lot of the ways that we have started to respond to public health crises includes that now. You have to get into the community. You have to talk to people where they are. And Barry's just a great example of that. He's a real hero.
You know, a couple of things on the, I just found the poster, by the way, Jeff, I won't show it to you right this second, but it's a great poster. We,
have a couple of comments on the AIDS ride itself. Jerome writes, I was fortunate enough to have participated in the very first AIDS cycle from San Francisco to Los Angeles in 1994 when there were only 500 of us and only about a dozen riders from the Bay Area. It's heartening and inspiring to watch the ride grow to thousands of riders over the years with participants of all
all persuasions. Christine writes with a point of clarification, the AIDS ride doesn't raise funds for research. The funds support the services provided by the SF AIDS Foundation and the LA Center, like giving out medication, meals, and other support. Very important funding, not for research, just...
Clarification. Sorry about that. Anthony writes, I have ridden in four California AIDS rides, ALC rides since 1998. In addition to the financial impact, I want to emphasize the importance of the community this has created and its effect across California in changing attitudes about both HIV AIDS and the gay community.
The ride wandered through many small towns, and we were greeted by neighbors, schoolchildren, Girl Scout troops, and all. Like the AIDS quilt, it put a face on the community to many who aren't living in San Francisco and Los Angeles. It also proved to ourselves, individually and collectively, that we have the power and agency to accomplish such an athletic and audacious goal. Wonderful thoughts on that. And Jen, you know, on a policy level, it does feel like things...
did change in part because people were able to get to the sort of hearts and minds of people who were not at the epicenter of this epidemic and seeing what was going on, you know, in the cash flow. Definitely. I mean, that was one of the amazing things about the movement that HIV, you know, the response to HIV started with the community. It really, because of so many different
ways in which people were meeting others and learning about this and whether it was very local, local or national, it really did start to change things. And I saw that in DC. I mean, I moved to DC in '95 to start working on HIV and health policy issues and really began to see that.
I know we'll probably talk about it at some point, but a very defining moment for me in that regard was in 2003 when President George W. Bush, to the surprise of most of the world, except for a very small group in the administration, announced that he was going to create PEPFAR, the global AIDS program, which completely changed the global AIDS response. And it was really, a lot of the reason was because of the
odd coalition that came, had come together to say, we have to do something around the world to address the AIDS crisis. Who was in that coalition? It was very, so the AIDS activists that had always been there, had always been pushing, began pushing really hard in the 90s once there was highly active antiretroviral therapy in the U.S. and in Europe and other high-income countries. It was, became very, so bleak to say, to notice that an
Africa and in other parts of the world that were not high income, no one had access to antiretroviral therapy or very few. And it just became a human rights challenge, an ethical issue. And they began pushing. And what happened was others joined them. And that included
Faith-based communities that had long worked in Africa on development issues. The evangelical Christian community became very moved to try to create something on HIV and get the federal government to do more. Members of Congress, Republicans and Democrats.
the Congressional Black Caucus, celebrities. It was a pretty interesting and unusual coalition, and they had been working on this. And then when they saw, you know, you learn this in policy school, there's windows of opportunity at times when things come together. And the president was open to this kind of a change, and these things came together, and then we got PEPFAR. Mm-hmm.
Jeff, was that a difficult coalition to hold together? Well, you know, I'm glad Jen has brought this up. And I think the first time I met her was in the AIDS conference in Durban in 2000 when the world woke up to what was going on in Africa. I'm sure Jen would probably remember the
phenomenal speech that Nelson Mandela gave. And standing there, it was just, I still get chills thinking about this hero and basically addressing his country and letting them know that there was, all we had was hope. They couldn't get the medications. They were too expensive. The thought was if we give them to these individuals, they're difficult to take and they won't be able to do it. And, and,
It was astonishing, really, when you think about as Americans, we never turned our focus to the consequences of a disease internationally or globally. We'd always been, well, what do we do in the US? What are we doing in this country, in our towns? And what we did was we actually, as a community of people who are addressing HIV/AIDS, and the faith-based groups were very central to this,
We actually said, we're responsible for people everywhere in the world who have HIV. And I really want to call out Jen because she's been there from the beginning in terms of building coalitions and building policy. And, you know, we did. I have to say one of my memories is that the AIDS conference in 2002 was in Barcelona.
And Tommy Thompson, the Secretary of Health and Human Services came up to speak. And I was one of the crowd that shouted him off the stage for what we considered almost a criminal neglect and inaction from the Bush administration. Couldn't get a word in. But to our great surprise, as Jen has noted, this changed. And he stepped up one of the greatest programs I think this country's ever done in terms of, you know, millions of lives have been saved.
You know, Jen, maybe there are people thinking, you know, they're not able to get health care in this country or they don't have access to the drugs they need for treatment in this country. What do you say to people who think, well, why are we offering drugs or offering support for these medications in other countries when we don't have enough here?
Yeah, as somebody who works on both global and domestic health issues, I do get that question quite a bit. And I get it. You know, if you're struggling in America to pay for food, to get your health care, it's really hard to understand why your government is also has been helping people elsewhere. I think it's partially it's a worldview about how
We live in a rich country, relatively speaking, and it's a view about how different countries operate in the world and how we're all connected. I mean, before HIV emerged in 1981, there was a general belief that most infectious diseases had been conquered, that we really had kind of come out of a moment we had...
responses, and we weren't really going to be threatened. And that HIV blew that up, you know, blew that out of the water. And it kind of was an eye opener to say, wait a minute. And since then, we've had SARS, we've had COVID, MPOCs, I mean, you name it, and we'll have more. And I think it changed the view that, wow, we are really all connected. And now we are more connected than we ever have been. People travel, people have, you know, business and, and
things all over the world, it's just not, it's not reasonable to think that what happens elsewhere doesn't affect us and vice versa. So whatever the view is, I think it's just understanding that this is, we are connected and we, and it's, it's whether you buy this as an ethical obligation or a human rights issue or really just a protective one for Americans. I mean, we're having a measles outbreak right now in the U.S. Those were imported cases. They weren't from the U.S. I mean, this is how the world is and we have, it's sort of, do we recognize it or not? Yeah.
A couple of people want to shout out some other heroes. Megan writes, you know, there were a lot of heroes who worked tirelessly to find treatments for AIDS. A shout out to George Rutherford, whom we know from his work during COVID. He played a significant role locally and eventually worldwide in the fight against AIDS. Patrick writes, you know, the research community, biologists and chemists learned insights from
into the AIDS viral cycle and designed drugs to attack HIV specifically. The pharmaceutical companies were dragged to HIV drug development by activists, but the legions of scientists at pharma companies are the reasons that HIV is no longer a death sentence. The activists were heroes, but don't forget the university and research scientists and, of course,
Elton John, Ryan White, Lady Di, very brave people. We're talking about the progress made against HIV/AIDS over the last 30 years. We're joined by Jen Cape, Senior Vice President and Director of Global Health and HIV Policy at KFF. Jeff Shih, longtime AIDS activist and the first openly HIV positive member of the San Francisco Board of Supervisors. And Dr. Monica Gandhi, infectious disease expert and professor of medicine at UCSF. We're also taking your calls.
about your experiences of HIV and AIDS from the 90s to now. 866-733-6786, forum at kqed.org. We'll be back with more right after the break.
Support for Forum comes from the University of San Francisco School of Management. Celebrating 100 years of partnership with the Bay Area business community, the USF School of Management connects students to the city's vibrant culture, hands-on internships, and a wealth of career opportunities. Where AI and sustainability are integrated into every facet of business education.
and where students bring innovation, ethics, and entrepreneurial leadership to a planet in need. The University of San Francisco School of Management. Change the world from here. Greetings, Boomtown. The Xfinity Wi-Fi is booming! Xfinity combines the power of internet and mobile. So we've all got lightning-fast speeds at home and on the go. That's where our producers got the idea to mash our radio shows together. ♪
Through June 23rd, new customers can get 400 megabit Xfinity Internet and get one unlimited mobile line included, all for $40 a month for one year. Visit Xfinity.com to learn more. With paperless billing and auto-pay with store bank account, restrictions apply. Xfinity Internet required. Texas fees extra. After one year, rate increases to $110 a month. After two years, regular rates apply. Actual speeds vary.
Welcome back to Forum. I'm Alexis Madrigal. We're talking about the progress made against HIV AIDS over the last 30 years. And Monica, I wanted to give you a chance to talk about sort of where we are at this particular moment in the Trump administration, where you mentioned earlier in the show that it seems like we are cutting funding and turning away from programs that you think have been effective.
Yeah, I mean, this is really unprecedented, but I will say that, you know, in the early 80s, which we've talked about here, there wasn't any treatment or prevention. So the Reagan administration not taking on HIV, there wasn't anything that was available. And here...
Now in 2025, we have treatment, we have prevention. Actually, we can end the HIV epidemic very readily with those two tools. We could completely be done with it because that's how amazingly well they work. So we were on track for two initiatives to end the HIV epidemic worldwide. One was PEPFAR, which has been mentioned before, which was started by
GW Bush and it's the most effective global health program ever designed. Actually 26 million lives saved and Jay Bhattacharya, who's the NIH director, wrote a piece in JAMA in 2012 about how effective this global AIDS program is and how foreign aid assistance by saving lives
in Africa has this kind of effects on international diplomacy and trade and we just look better in the world when we help other people. So there's effect, let's just take out HIV for a minute, it's just effect on our, you know, kind of our global security to be involved in foreign assistance worldwide.
So PEPFAR started getting attacked basically four days after the inauguration. And fundamentally now, even though PEPFAR is still kind of hanging on by a shred, the gutting of USAID really is what cut PEPFAR off of the knees. So right now there are impacts there.
on care, treatment and prevention of PEPFAR. It's in the latest budget from the administration on May 6th. So we're really hopeful and we're advocating, but it's not gonna be, it's kind of had like its partner cut out from underneath it from the USAID gutting. So PEPFAR is going down, there's an impact tracker
that there's been, just since this administration started, 60,000 excess deaths in adults and 6,000 in infants from the effects of the cuts. And then domestically, lots of cuts. But if you look across the Department of Health and Human Services, one would be the impact on the NIH. So lots of those cuts and those terminated grants.
seem to be more in the HIV field just because we talk about diversity and transgender individuals. And so those are the, you know, we're adjacent to HIV works with, I'm an HIV researcher, but we work with communities that are affected. And those are the bad words in this administration. And then there's also HIV prevention division at the CDC, which is
Severely threatened, lots of laid off employees at HHS. And then I, as an HIV provider for low income population, because Ward 86, you know, we're at the county hospital that San Francisco has funded, very worried about Medicaid.
cuts, which the House has passed, but not yet the Senate. So we'll have to see about that. So that it feels like, you know, HIV, like all infectious diseases, we're going to get the effects if we don't help the world here. And I think the main is we're going to get resistance. There's going to be resistance to first line therapy worldwide, which is the same therapy we use here.
So if we collapse programs, it's going to, globally, it's going to affect us here in terms of how we can treat and prevent here. And then this de-emphasis on prevention in this country is a big problem because we have amazing prevention tools. One's coming up in a couple of weeks. And we need to be able to prevent and treat HIV.
I mean, Jeff, do you think that some of the problem is that policymakers have sort of forgotten how bad the problem can be if we don't, you know, keep up the fight? No, I think it's rank bigotry. I think the people who get HIV and people's minds in policymaking circles are not us for them. And I think that's part of it. I think a big part of it, you know, RFK,
at one point was an AIDS denialist, was not even, you know, had said at times that HIV didn't cause AIDS. So I really think it's more of a question of...
The people there carry these biases with them, and they're such powerful motivators for their policy choices. And as Monica was saying, we're at a point where we can end the epidemic. If you're successfully treated like I am and you're to the point where you're undetectable, you cannot transmit the disease, right? Like I can't infect somebody even if I'm not wearing a condom.
Likewise, if I take these medications, these pre-exposure prophylactic medications, which can be a pill, you can do it every day or you can do it right before you're going out and then a couple of days afterwards if you're, you know, we call it kind of disco dosing. And now we have an injectable that you can get that you take, you get the injection every two months.
So, you know, six times a year, you're prevented from getting HIV if you're negative. So we have this really remarkable opportunity to end this disease. And we're taking our foot off the gas, mainly because of people's prejudices that they brought into the administration that have no business there. Let's go back to the phones here. Let's go to Ray in San Rafael. Welcome, Ray.
Hey, good morning. I just wanted to make a couple of comments. Going back in time to the early 80s, I was on the San Francisco Fire Rescue Squad when we first encountered the
victims of HIV, advanced disease, and we had no idea what we were dealing with. The medical community didn't know what we had to deal with, but it changed the entire protocol of emergency medicine in San Francisco at the time, and eventually it spread because up until that point, we didn't wear rubber gloves. We didn't wear masks. We do
mouth-to-mouth resuscitation on a victim with cardiac arrest without any device. But within a matter of months, everything changed. And
And we had the glove up, we had the mask up, and no more mouth-to-mouth without a device in between. It was a remarkable time period south of Market where I spent most of my 30 years of street medicine. Anyway, you have a great show, and I'm grateful for your efforts in spreading this important information. Thank you very much. Hey, thank you, Ray. Thank you. Jeff, did you want to say something? Yeah. Oh, I thought you had come. Yeah.
Yeah, it's fascinating to think about how many people were really involved in the response here and in figuring out what and how to...
What kind of infrastructure would be necessary to support people who had HIV, AIDS, and all the way from the street level to figuring out the policy and research levels there as well. We have a couple of other listeners here who are writing in about these times. One listener said...
In high school, my teacher said, if you have HIV, you will die from AIDS. I remember crying because my family member had HIV at the time, and I couldn't believe their death was so certain. Today, they are healthy and still alive 25 years later, thanks to all the activism, research, and drug improvements.
Monica, I wanted to touch on one other research thing with you, which is just the kind of spillover effects of what it has done for medicine to study HIV and then apply that knowledge to other viruses. Yeah, I mean, HIV is very kind of interesting biologically in the sense that it is a chronic disease. So this focus on viruses.
chronic disease right now in the current administration, if anything, we should be turning more towards HIV because it informs a lot of fields. The research in HIV informed, for example, cancer prevention. We know about CAR T-cell therapy because of HIV. It informs aging and it's how we can combat aging and inflammation. The research in HIV informs cardiovascular disease, heart disease.
and also importantly, other infectious diseases because it's both an RNA virus and a DNA virus, basically it's kind of both. And so what that means is it helped inform, HIV research helped inform the rapid development of the COVID vaccine, nine months to get to a COVID vaccine, it's unheard of with a pandemic. So that was really all from HIV research. So it really, it has so many effects on the body
And it's such a complicated infection that all the research in HIV informs other fields. So cutting HIV research seems to me particularly short-sighted. I'm a clinician and a researcher, but the research aspect at the NIH, I'm really flabbergasted because the NIH-based research in HIV has informed so many other infections and diseases. Yeah.
You know, another listener on Blue Sky Chips in on this. My appreciation for the AIDS community is infinite. In 2001, my 13-year-old son was diagnosed with Burkitt's leukemia, which required intense chemo. He developed fungal pneumonia and was on amphotericin B. The AIDS community shared ways to mitigate the side effects, and it was beyond helpful. Thank you. Let's bring in Sandra in Oakland. Welcome. Hello. How are you? And thank you for this wonderful discussion.
Yeah, thanks for joining us. I wanted to comment on advocacy and persons who stepped up early in the fight against disease. One person in particular, the late Dr. Robert Scott, noted HIV AIDS physician, was also a member of Allen Temple Church and helped Allen Temple Church establish an AIDS ministry. One of the few AIDS ministries established previously.
in the African American church that continues today. And some of the conversation included three of the international conferences. We attended those conferences with Dr. Scott, the one in Durban, the one in Barcelona, and the one in Bangkok. And our sole goal was to go get information, bring it back to the community to help in the journey of HIV/AIDS.
Just so people... He did not stand for him. Yeah. Oh, and that was Dr. Robert C. Scott III. Passed away maybe about 10 years ago.
Yes, yes. He led us to adopt an AIDS orphanage in Zimbabwe, the Mother of Peace Orphanage. He used to go six times a year to treat those orphans whose parents had died from AIDS. He would take meds. He would take clothes.
And some of the things that we saw when we went there, there were people who would line up for days knowing he was headed there to treat them. Right.
I remember on one trip, someone brought their sick relative in a wheelbarrow because they knew Dr. Scott was coming to treat them. Down the road from the orphanage was a leper colony. And we're talking about people who of themselves needed help. And Dr. Scott oftentimes was the only help they had.
Wow, Sandra, what a beautiful memorial to Dr. Robert Scott. Really appreciate that call and that sort of dimension that you added there. You know, Jeff, one of the things that I was wondering about is whether the sort of policy and medical advances...
have helped with what must be trauma from having lost so many friends and loved ones in the early part of the epidemic? Or is that almost like a separate process? Like, are these things united for you or different? They're both united and different. It's a bit surreal. Like, in the mid-'80s, I firmly believed I was not going to live to 40. I mean, that was a certainty.
And when I was appointed to the Board of Supervisors, it was just stunning to me that, first, I'm still alive. I'm married to my husband. We have a child. And I've been appointed to the seat Harvey Milk used to have. And it was almost too much to hold.
When I think about the people who are not with us, the people like, you know, one of my closest activist friends was Jeff Getty, who had the baboon marrow transplant to try to survive the epidemic. And he was so fierce and so heroic. And I could just go down the list of other names of people who aren't here. And why am I here? And they're not.
And then just being in the community, like I think almost the entire community has PTSD, whether you're a person living with HIV, whether you didn't get HIV but you were a member of the community. You know, our lesbian sisters, you know, and since Monica's on here, I always have to get a shout out to Dionne Jones. When I was in the ER at San Francisco General in the mid-'90s, Saturday night,
Chaos. And she swooped in and she's like, I think I know you and helped get me up to the really fabulous AIDS ward, the first one in the country, Ward 5A. There's so many people who participated in that and so much loss that was experienced across the entire community that I still think in ways we don't even really understand, we're still dealing with that. Yeah.
Jen, I wanted to ask you, you know, one of our listeners, Bob, we're not going to get a chance to get on the phone, was curious about the role of Dr. Fauci and sort of someone who's been kind of demonized in recent months and years and his role in all this.
Was that directed? Oh, that was huge. Yeah, sorry. Yeah. Yeah. Okay. Sorry. Yeah. I mean, it's really hard to capture how much Dr. Fauci contributed to everything that we consider an advance in HIV and not just HIV in many infectious diseases. I mean, he...
you know, it's best to hear it from him, but he would tell the story of, you know, he was a young scientist at NIH and he started working on HIV, which was against the advice of everybody else. And he also was criticized by activists for the slow ways and bureaucratic ways in which the agencies operated. And he listened. And I think that was, you know,
pretty, I think that just that alone kind of captures who he was. And then throughout his career, he was a person who really, I think, pushed the envelope and tried to, you know, make connections and figure out how things could be improved. And he, I mean, honestly, he did so much. To see him demonize is, you know, that just goes back, we're in a very partisan time and things are, it's very hard. Science has suffered and public health has suffered and from COVID and from other political
Yeah.
Last few comments from listeners here, just sort of recalling their family members and people that they've lost. Liza writes,
Pat taught high-impact aerobics, and a group of us decided to make a panel for Pat for the AIDS Memorial Quilt. Each time panels from the quilt come to San Francisco, I go out to see them and remember them.
Martina writes, my uncle Peter Satris died of AIDS at the SF Zen hospice in 1994 at age 40 when I was 12. I'm grateful we'd been taught about HIV and AIDS in school and my parents understood how HIV was transmitted and took us to visit him. He was so thin. I wish he'd been able to survive just a couple more years. Two years later, the drugs that could have saved him were available. Uncle Peter studied Sanskrit at Berkeley and was deeply involved in the transcendental meditation community there.
in the Bay Area. One last comment. A listener on Blue Sky writes, my husband is currently on the final AIDS life cycle. He's pushing himself beyond his perceived physical and mental limits and celebrating life with such an amazing group of people who share joy, support, and love.
love. We've been talking about the progress made against HIV/AIDS in the last 30 years, celebrate the end of the AIDS lifecycle ride which rolls for the final time into LA this weekend. We've been joined by Jen Kate, Senior Vice President and Director of Global Health and HIV Policy at KFF. Thank you, Jen. Thank you. We've been joined by Dr. Monica Gandhi, infectious disease expert and professor of medicine at UCSF. Nice to talk with you again, Monica.
Thank you. Honored to be here. And we've been joined by Jeff Shee, longtime AIDS activist and the first openly HIV positive member of the SF Board of Supervisors. Thank you, Jeff. Thanks, Alexis. I'm Alexis Magico. Stay tuned for another hour of Forum Head with Nina Kim.
Support for Forum comes from the University of San Francisco School of Management. Celebrating 100 years of partnership with the Bay Area business community, the USF School of Management connects students to the city's vibrant culture, hands-on internships, and a wealth of career opportunities. Where AI and sustainability are integrated into every facet of business education.
and where students bring innovation, ethics, and entrepreneurial leadership to a planet in need.
The University of San Francisco School of Management. Change the world from here. Support for KQED podcasts comes from Earthjustice. As a national legal nonprofit, Earthjustice has more than 200 full-time lawyers who fight for a healthy environment. They wield the power of the law to protect people's health, preserve magnificent places and wildlife, and advance clean energy to combat climate change. Earthjustice fights in court because the Earth needs a good lawyer.
Learn more about how you can get involved and become a supporter at earthjustice.org. All right, here we go. New Phineas and Ferb is here. We're back, baby. For 104 more days. I know what we're going to do today. Of summer vacation. I am ready for summer shenanigans. Let's do it. All right. We're going to Ferb once and for all. Are we going to do this again? New inventions, shenanigans, innaters, adventures, and songs. Ferb.
Summer Vacations. New Phineas and Ferb starts June 5th on Disney Channel and next day on Disney Plus on DisneyPlus.Disney.com.