In the late 1980s, few could have known that Ryan White, an Indiana teenager living with AIDS who bravely fought discrimination and stigma on behalf of all people with the disease, would end up being the namesake, only a few months after his April 1990 death, of a massive federal program to help such folks. In the decades to come, the Ryan White CARE Act (RWCA) would keep roughly half a million Americans living with HIV/AIDS alive and well with doctor care, meds, and other life essentials including housing, transportation, food and nutrition, and counseling and case management. It has also funded numerous HIV prevention efforts, including, in recent years, efforts to expand access to PrEP, the HIV-prevention pill regimen.

It all started on August 18, 1990, when—after months of lobbying on the part of HIV/AIDS activists, including celebs like Elizabeth Taylor, and bipartisan congressional champions including Sen. Ted Kennedy (D-MA) and Sen. Orrin Hatch (R-UT)—the RWCA was signed into law with overwhelming bipartisan support, funded initially for 1991 at $220 million. At that time, exactly one medication showing some activity against HIV existed: AZT.

Thirty years later—after the advent of countless powerful new HIV meds and scientific advancements including PrEP—RWCA remains the only federal program for a single disease, still enjoys wide bipartisan support despite our insanely politically divided times, and is currently funded at $2.38 billion.

Most importantly, in a country still without universal health care despite some expansions made by Obamacare (the Affordable Care Act), RWCA remains the single largest provider of care, treatment, and other services for roughly half a million Americans living with HIV/AIDS—about half the nation’s HIV population. It has been a literal lifeline to countless people with HIV, including this middle-income freelance writer, whose health insurance premiums RWCA has covered for 15 years now. And in the COVID-19 era, it remains as important as ever, benefiting recently from an added $90 million to address novel coronavirus issues in people with HIV/AIDS.

We chatted with two longtime RWCA experts, San Francisco AIDS Foundation’s Ernest Hopkins and the Kaiser Family Foundation’s Jennifer Kates, Ph.D., about how RWCA got off the ground, what growth and challenges it’s been through the past 30 years, and what the future holds for it. (Note: Kates had to leave the call earlier than Hopkins.)

Tim Murphy: Thanks to both of you for talking to me today. Let’s start by talking a bit about the world for people with HIV in the 1980s, prior to RWCA.

Jennifer Kates: It was very different, for a number of reasons. Even though there was no truly effective combo therapy yet for people with HIV, there were some treatments. But before RWCA, there was no way for people with HIV who were un- or under-insured to pay for the care they needed. It was falling to either the states or to organizations and individuals to deal with it. It wasn’t a tenable situation for an epidemic whose patients were less likely to be insured, or who had actually lost their insurance because of their HIV status. There was no safety net.

Ernest Hopkins: To add to that, at that time, there were people who found it completely unacceptable that they were going to die of HIV complications and suddenly became their own pharmacists, researchers, medical providers, and drug importers. It was a wild environment that was very segregated by class, race, and gender. Often we hear the story of relatively wealthy white gay men who were completely appalled that they were being stigmatized and marginalized in ways they hadn’t been used to, even as LGBT people. This was a period when people [with HIV/AIDS] were being thrown out of their apartments, being fired, with no consistently available treatment. It was a Wild West period, and I think a lot of people who’ve survived that time have had PTSD recently, with COVID and all these discussions of there not being enough ventilators or access to meds.

Murphy: So that’s setting the time and place. How did RWCA come to be?

Kates: The precursor was certain state AZT programs, funded by a federal grant because the annual price of AZT was so high [$10,000 in 1987, dropped to $8,000 after pressure from ACT UP and other activist groups]. Simultaneously, hard-hit cities like New York and San Francisco were seeing their own abilities to provide care being taxed. All this led to the need for a federal solution, and of course it helped that Ryan White himself, his mother [Jeanne White-Ginder], and celebs like Elton John all came together and united around this idea.

Hopkins: People like Sen. Ted Kennedy, Sen. Orrin Hatch, and congressional staffer Tim Westmoreland also worked very closely with community folks like Tom Sheridan of AIDS Action Council, Pat Christen of San Francisco AIDS Foundation, and Lorri Jean, who is currently the head of the LA LGBT Center. Amid the conversations preceding RWCA, a fundamental concept was that the AIDS epidemic needed an emergency program that would target hard-hit communities and provide them with services.

Also, in San Francisco, a comprehensive care model had built up around the idea of holistic support, where you incorporated both medical and supportive social services, including housing, transportation, food, mental health, etc., all into one package. So both emergency management and comprehensiveness of care were the foundational basis of RWCA. Sixteen cities were initially identified as needing help, based on HIV/AIDS case count. Initially, the money flowed directly to cities.

Kates: It’s interesting that that is still the conceptual framework, money flowing down from the federal level to state to city to actual service agencies.

Hopkins: And among the important services that RWCA funded was a program in which dental students gave free care to people with HIV/AIDS. At that time, people with HIV/AIDS were very stigmatized in dentistry, but oral infections were frequently one of the ways that people were first diagnosed with AIDS.

Murphy: So, what about bumps along the way?

Kates: Since day one, there has been tension over how best to distribute the money, how you best capture a picture of which places have the biggest HIV burden.

Hopkins: The controversy has been mostly around how jurisdictions are funded. In the beginning, it was quite political. Yes, the original 16 cities funded were based on burden of disease, but in some places they had to use density, the number of cases per 100,000 people, because some jurisdictions had prisons with a significant number of people with HIV/AIDS living in them. The distribution funding models were not always completely clean, and adjustments were made in order to ensure that certain jurisdictions were funded. This is not specific to HIV. Any funding stream, to be passed, needs the votes of certain influential lawmakers who are on particular committees and want to make sure their jurisdiction is supported.

So, as we moved from the original passage in 1990 to the first congressional reauthorization [reconsideration for future funding] in 1996, we started talking about the difference between cumulative cases, which includes those who’ve died in the total case burden, versus taking a real-time snapshot. The ability to do that improved over time, so we moved away from a cumulative count to one that was weighted to reflect that not all cases were still alive.

That whole push in 1996 to readjust the funding formula was very contentious. It was almost designed to pit different jurisdictions against each other, because it was the first time people were looking at the resources and trying to advocate for their particular jurisdiction, moving away from the idea of emergency assistance to what they needed to shore up their public health infrastructure. It had a very negative effect on our ability to unify as an advocacy community.

There was merit to the idea of not counting people who had died, but at the time, we didn’t yet have accurate real-time living case counts, which we use today.

Also, over time, the epidemic changed racially and socioeconomically, and the funding disparities became regional. Fights between the South, the Northeast, and the West occurred, about shifting support away from cities to among states, because in the South, the epidemic was more dispersed through rural areas.

Kates: The program started as an emergency stopgap, but what ended up happening, because of the inherent challenges of our health care system—only some of which have been addressed by Obamacare—is that RWCA has become an essential part of the fabric of providing care to people with HIV/AIDS. And that’s partly because there’s such a strong patient advocacy community that has mobilized around need. The response to HIV by the community has fundamentally shifted the way diseases are addressed worldwide. Today, patient advocates and community voices, including nonprofessionals and non-technical experts, now play a big role in making health policy. When RWCA was being made, the community was at the table—and it has continued to be.

Murphy: Let’s talk a bit more about how RWCA responded to the explosion of powerful and very expensive new HIV medications after 1996.

Hopkins: Initially, in the early 1990s, just funding the combo of AZT and 3TC was stretching the program. But come 1996, the media attention on the new meds and on the work of Dr. David Ho at the Aaron Diamond AIDS Research Center created a robust response from the Clinton administration and Congress. [Then vice-president Al] Gore engaged with the Office of HIV/AIDS Policy at HHS, and that was the origins of the emergency allocations to ADAP [RWCA’s AIDS Drug Assistance Program] that was embraced by Sen. Arlen Specter (R-PA). But at that point, RWCA became more medicalized, too, shifting away somewhat from the wisdom of the HIV community to more traditional providers.

Murphy: Let’s talk a bit about how the 2010 passage of the Affordable Care Act, Obamacare, impacted RWCA.

Hopkins: The 2012 Supreme Court decision to make expansion of Medicaid optional for states rather than mandatory, as originally set by Obamacare, was tragic and has had far-reaching implications for people with HIV. We’d hoped that much of the challenges with HIV in the South would be addressed by the universal expansion of Medicaid, to take the burden off RWCA. But Medicaid eligibility remains limited in 12 states, mostly Texas and the Southeast, which means that RWCA is still the default for people with HIV. This is partly why RWCA has continued to enjoy support, because Republican lawmakers who’ve gone after Obamacare know that you can’t attack Obamacare and RWCA at the same time.

Murphy: As you said, RWCA remains the only comprehensive federal program for people with a specific disease. Is that a smart model?

Hopkins: Ideally, our health system would’ve evolved by now to the place where many of the safety-net services of RWCA would be core components of public health. But we have not been able to achieve that. I don’t think the RWCA model needs to be replicated for other diseases. We need to get to a place where we have universal health care for everyone that acknowledges core needs like housing, food security, and parity between mental and physical health.

Murphy: But do you think we might need a RWCA-like program to address COVID-19?

Hopkins: We actually may, because the story about COVID that the Trump administration doesn’t want to tell is that so many people who’ve survived it will have damage to their heart and lungs that will impact them over a lifespan and may need additional federal response. In that RWCA was an emergency program with no successful meds that evolved into a program that delivered effective meds, it could be a model for that.

Murphy: Ernest, would you ever have imagined 30 years ago that this “emergency” program would still be so crucial today?

Hopkins: I didn’t expect HIV to last 30 years. We expected that by now we’d have a vaccine and a cure. it doesn’t give me a lot of hope for the future of the COVID epidemic. But I hope everyone understands that the very same federal HIV trial network is being used for vaccine development for COVID. Over and over, things designed to combat HIV end up combating some other disease. It’s a testament to how well HIV resources have been used over time.