The KFF HIV policy expert breaks down funding gaps, racial disparities, and what every American needs to know about the state of HIV in 2026.
Lindsey Dawson has spent her career at the intersection of health systems, insurance coverage, and federal funding as it relates to HIV. As associate director of HIV Policy and director of LGBTQ Health Policy at KFF, she conducts research and analysis on how policy decisions shape access to care for people living with HIV, with a particular focus on communities of color and LGBTQ populations. Before joining KFF, she worked on domestic HIV policy at The AIDS Institute and holds degrees from Smith College and King’s College London. She sat down with Munson Steed on Health IQ to talk about where HIV policy stands today and what is at stake for the communities most affected.
If someone asked you what the state of HIV policy is in the United States, what are the top three things you would want them to know?
The first thing is the degree to which HIV impacts Americans today. People often think of HIV as an epidemic that happened in the 80s or 90s, and they are surprised to learn that more people are living with HIV now than ever before. Part of that speaks to a success story, and part of it speaks to a challenge. The success is that when you have HIV and you are on care and treatment, you can live a long, healthy life. The challenge is that tens of thousands of infections still occur each year. Today, 1.2 million people in the U.S. are living with HIV, and it disproportionately impacts people of color and gay and bisexual women.
Number two is that there are highly effective ways to treat HIV. The federal government has invested in that over time, but access is uneven and is addressed at both the federal and state level, as well as depending on what type of health insurance you have.
The third is what the federal effort to address HIV actually looks like, both in terms of funding at the congressional level and the appetite to address HIV as a policy area at the administrative level.
What changes over the last year as it relates to national HIV policy does the community need to be aware of?
In terms of national policy, there has not been a tremendous change in what programs are funded through Congress. We did see the administration roll back on their commitment to ending the HIV epidemic, which was a first Trump administration initiative. Their budget request reflected reduced commitment to HIV funding, but for the most part Congress rejected that and continued to fund both treatment and prevention.
The bigger policy changes in the last year are twofold. On the industry side, we now have a long-acting prevention medication. Yeztugo is the brand name, lenacapravir is the generic, and someone at higher risk for HIV can have an injection twice a year to prevent infection. That is significant for HIV prevention.
At the state level, we are seeing rapid changes in the ability to fund AIDS drug assistance programs, which are part of the Ryan White Program, the national HIV safety net that helps care for about half of people with HIV. State programs are facing a very difficult situation. Federal funding has been stagnant since 2014, and when you account for inflation, funding today looks like it did in 1999. This is despite drugs being more expensive, more people being enrolled, and a growing understanding that treating people with HIV immediately is critical. States are stuck trying to figure out how to provide care with limited resources, and the changes they are making can limit people’s access.
Can you explain the disparity in how this impacts the African American community and Black women specifically, and how policy at both the state and national level plays into that?
States are under multiple pressures. The cost of insurance has gone up, advanced premium tax credit enhancements have gone away, and they are receiving fewer rebates. It is not just one thing, but it is ultimately leading to states having to make very difficult decisions about how to fund safety net care for people with HIV.
In terms of disparities, health disparities experienced by people of color are not unique to HIV, but HIV has added challenges related to stigma and discrimination. When sexual networks are more closely held, it can also mean that populations already seeing higher HIV incidence continue to experience it at higher rates. Federal funding is designed to address the hardest hit areas, and some funding is specifically directed toward populations of color and other high-risk communities, but communities are largely left to make decisions based on their local needs.
What does shrinking PrEP funding say to young people, and what would you like to see community leaders do to advocate for better HIV policy?
The Ryan White funding is specific to HIV treatment, but there have also been questions about the future of HIV prevention funding. Most HIV prevention funding in the United States comes from the CDC, and that funding trickles down into communities to support PrEP delivery systems.
More broadly, increasing PrEP access is really about addressing the barriers that exist, because the medication is widely available and most insurers should be covering it with little to no cost sharing. The barriers now are around stigma and discrimination, and willingness to talk to a provider. At the individual level, the question is whether someone is comfortable discussing PrEP with their doctor. At the provider level, there is still room to grow in terms of awareness, comfort with the science, and the ability to talk to patients in a culturally confident way.
If you were giving a speech specifically to Black women about HIV and how it is impacting their lives, what are the three things you would want them to know?
The first is awareness. There is limited awareness around women’s risk for HIV, and women of color, particularly Black women, are at disproportionate risk. Awareness of that is the first step toward making decisions that reduce risk.
The second is knowledge around prevention options. PrEP uptake has been much higher among gay white men and significantly lower among gay and bisexual men of color and women overall. That is partly about educating individuals on their options and partly about educating providers on who is eligible for PrEP and how to have those conversations openly with patients.
How would you explain HIV stigma to someone who has never encountered that term before?
Stigma around HIV refers to cultural attitudes toward people who have HIV, often tied to perceived reasons someone might have acquired it. There is stigma around being gay or bisexual, around drug use, and around being part of the LGBTQ community. Addressing stigma means confronting those underlying levers of discrimination and misinformation, because they directly affect how people experience HIV and whether they seek care.
If you were speaking to teenagers about HIV and sex, how would you frame it in a way that feels real to them without being preachy?
The first thing to know is that HIV is not something of the past. It is part of our communities and our lives today. Many people know someone living with HIV, and understanding it is an important part of being a sexual person.
The second is that HIV is both preventable and treatable. There are tools, including PrEP, to prevent acquiring HIV if you are at higher risk. And if you do acquire HIV, it is not a death sentence. People live long, healthy lives with HIV. If you take medication and reduce the virus in your body to an undetectable level, you cannot transmit HIV to other people. That is good for your own health, for your relationships, and for keeping HIV from spreading in the community.
What would you ask pastors and community leaders to say and do as it relates to HIV policy going into the midterms?
We do not make policy recommendations and we are nonpartisan, but it is important for leaders and communities to be aware of the issues impacting the people around them. HIV is certainly going to be one of those factors for some leaders and for some faith leaders. Understanding it, and understanding the experiences of people in their community, is part of being a trusted individual in people’s lives.