The HIV Equity Crisis: What the Data Says About Who We're Still Failing

The United States has never lacked the tools to end its HIV epidemic. It has lacked the will to distribute them equitably. That distinction is at the heart of where the HIV crisis stands today: a moment defined less by scientific limitation than by political retreat, structural abandonment, and the consequences of decades of disinvestment in the communities that have always carried a disproportionate share of the burden. The “Ending the HIV Epidemic” (EHE) initiative launched with genuine promise and produced measurable results in the jurisdictions it reached.¹ The arrival of lenacapavir, a twice-yearly injectable PrEP option, represents perhaps the most significant prevention advance in years. And yet access to both is narrowing, not expanding, as federal funding for HIV testing, prevention infrastructure, and community-based programs faces sustained pressure. The gap between what medicine can offer and what the system delivers has rarely been more visible, or more consequential.

Understanding that gap requires confronting the structural forces that drive it. HIV disparities in Black communities are not explained by behavior. They are explained by the absence of universal health care; by the concentration of today's epidemic in a South where seven of the ten states with the most uninsured residents have declined to expand Medicaid;² by the persistent economic legacy of redlining in neighborhoods that still bear the marks of deliberate federal disinvestment;³ and by housing instability and food insecurity that make PrEP—however effective—a secondary concern for people whose immediate survival demands their attention. PrEP uptake gaps are similarly not explained by individual reluctance alone. They are explained by provider training deficits, by the structural barriers that separate a prescription from actually having medication in hand, and by a healthcare system that has rarely been designed with these communities in mind.⁴ The most promising interventions—same-day initiation, pharmacist-led models, telehealth paired with home delivery, peer and patient navigation—work precisely because they reduce the distance between people and the tools that could protect them.⁵ The challenge is sustaining them in an environment where the policy scaffolding that makes them possible is being actively dismantled.

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Oni Blackstock, MD, MHS, has spent her career at the intersection of HIV clinical care, public health leadership, and health equity research. A primary care and HIV physician trained at Harvard Medical School and Montefiore Medical Center/Albert Einstein College of Medicine, where she completed an HIV clinical fellowship at Harlem Hospital Center, Blackstock served as Assistant Commissioner for the Bureau of HIV at the New York City Department of Health and Mental Hygiene from 2018 to 2020, overseeing the city's HIV response, leading the Ending the Epidemic initiative in New York, and launching public health campaigns focused on women, communities of color, and PrEP access. She is currently the founder and executive director of Health Justice, a social impact consulting and research organization that partners with health institutions to embed racial and intersectional equity into their policies and practices, and leads the organization's Grounded Innovation Lab, which develops community-centered frameworks for governing health AI systems. Her research has focused on HIV prevention and care for women and marginalized communities, and she has been a consistent and urgent public voice on the consequences of federal disinvestment in HIV programs during a period of significant political upheaval. In the conversation that follows, conducted as part of Contagion's HIV Awareness Month series, Dr. Blackstock addresses the full arc of the equity crisis—from the EHE initiative's unfinished business to the structural roots of racial disparities to what ID physicians outside high-burden urban centers need to understand about the epidemic happening around them.

Transcript edited for clarity.

Contagion: The "Ending the HIV Epidemic" initiative set a 75% reduction goal by 2025. What happened, and where does the strategy stand now?

Oni Blackstock, MD, MHS: When EHE was launched, it was a hopeful moment for so many of us in the HIV field. It was an initiative with clear targets for reductions in new HIV infections that was backed by a reasonable level of investment by the federal government. It felt like the end of the epidemic was possible. And the irony is that this initiative was launched by the first Trump administration, which, in its second iteration, has been trying to dismantle the very foundation on which EHE sits, which is the CDC’s HIV Prevention program. So, needless to say, while we don’t yet have 2025 data for new HIV infections in the U.S., given prior available data, the trajectory would have fallen short of the 2025 goal. However, there is a bright spot—in EHE-funded jurisdictions from 2017 to 2022, new infections fell 21% compared with a smaller decline nationally, suggesting the EHE investment had a positive impact on reducing new infections.

EHE remains in the FY2027 budget request, but the impact of that funding depends on whether the scaffolding around it, which funds HIV testing, community-based prevention programs, and public health monitoring, is maintained. At a time when we have a new, powerful PrEP tool in lenacapavir, the twice-yearly injectable, access is becoming more challenging, in terms of whether people have insurance at all, and whether insurance will cover it. We have the tools; it’s the political will that is lacking and that directly impacts access.

Contagion: What are the specific structural barriers, beyond individual behavior, that explain persistent HIV disparities in Black communities?

Blackstock: Starting with health care. We do not have universal health care, and for many Americans, health insurance is tied to employment. Because of persistent occupational discrimination, many Black Americans are less likely than their white counterparts to have jobs that provide health insurance. Adding to this, the epicenter of today’s HIV epidemic is the South, which is home to seven of the ten states that have not expanded Medicaid. Given that Medicaid insures most people living with HIV, the lack of Medicaid expansion in these states has further compounded barriers to access testing, treatment, and prevention for Black communities in the South.

Outside of health care, discriminatory housing policies such as redlining and racial covenants still have a legacy that persists today. Redlined neighborhoods, those tagged as risky investments for federally backed mortgages in the 1930s, still have worse health outcomes because those areas have experienced chronic disinvestment by the government; as a result, they have concentrated poverty, unstable housing, food insecurity, and limited access to quality health care, which are all barriers to HIV testing, prevention, and treatment.

Contagion: PrEP uptake remains dramatically lower in the populations at highest risk. Why is that, and what interventions are actually working?

Blackstock: On the structural level, PrEP, for the most part, requires insurance, regular lab monitoring, and a clinical provider. People who are uninsured or underinsured are likely to be unable to pay out of pocket for the medication, clinical care, and lab tests associated with it. People placed at the highest risk for HIV are also people who are more likely to experience poverty, unstable housing, and food insecurity. If people are trying to just survive, HIV or PrEP understandably may not be at the front of their minds. That is why it is important to include PrEP with other services that people need and care about.

Provider barriers are the next level. Many health care providers lack training in prescribing PrEP, so they may not even discuss this effective prevention option with their patients. Some may also harbor discriminatory assumptions about which patients should or shouldn’t be prescribed PrEP, based on biased beliefs about risk compensation or non-adherence. Other providers may feel uncomfortable discussing sexual history and sexual health goals with their patients, so PrEP may not even enter the conversation unless the patient brings it up.

At the individual level, some people who may benefit from PrEP might not perceive themselves to be at risk for HIV, while others may fear judgment from health care providers or from others inquiring or having PrEP, or they may be worried about PrEP’s safety and side effects.

Approaches that are promising are those that overcome structural barriers—so, those that reduce the distance between the patient and getting PrEP in hand. So, that includes same-day PrEP initiation, including pharmacist-led models. Telehealth-based PrEP, especially when paired with home delivery, is helping to get PrEP to folks, including those in rural areas or in areas where there may not be PrEP providers. There are still gaps, though, with telehealth, seen in terms of uptake by Black and rural communities, so there is still work to do. Peer and patient navigation, which has a long history in HIV treatment, is another promising approach that helps to address structural barriers, as navigators may help with paperwork for insurance and for patient assistance programs, as well as with making appointments and getting to and from the clinic. Also, whether people actually stay on PrEP is another issue. For example, these models help to get PrEP in hand, but often structural barriers make it hard to actually stay on PrEP, which speaks to a need for sustained support.

Contagion: What should ID physicians who are not in high-burden urban centers understand about the HIV epidemic that they may not be seeing in their own practices?

Blackstock: Truly, anyone can be affected by HIV. The epidemic, while it disproportionately impacts certain groups, can affect anyone who is sexually active or injects drugs. I would want all ID physicians to hold onto a few things. First, routine HIV testing is recommended for everyone, regardless of perceived risk, and treating testing as routine is what helps to remove the stigma from it.

Second, all patients should know about PrEP, that it works, and where to get it. If not for them, then it’s information they can share with family and friends who may benefit from PrEP. Third, HIV treatment is safe, tolerable, and highly effective. Someone who is diagnosed, linked to care, and started on immediate treatment can expect to live a long life. And also, of course, Undetectable equals Untransmittable (U=U)—once someone is on and adhering to HIV treatment and virally suppressed, it not only benefits their individual health, but they also have effectively no risk of passing HIV to a sexual partner.

Contagion: What does the recent CDC and federal HIV program funding uncertainty mean for the communities most dependent on those resources?

Blackstock: This is deeply concerning. I’ve seen up close what is at stake. When I was Assistant Commissioner at the New York City Department of Health and Hygiene, we received millions of dollars from the CDC for HIV public health monitoring and tracking, as well as funding that flowed out to clinical and non-clinical programs in the community to connect people to HIV testing, PrEP, and other HIV prevention services. The proposed funding would severely disrupt the foundation for these services.

For people living with HIV, the Ryan White Program provides care, medication, and support services like case management and housing assistance that help to keep people in care. The Housing Opportunities for People with AIDS would be virtually eliminated. So, cutting this funding would fall hardest on the communities already most vulnerable, worsening outcomes, and reversing hard-won gains. At the same time, 45 years into the epidemic, we have continued to push, to advocate, and to take care of one another. I am hopeful that, with continued advocacy, we can prevent these cuts.

REFERENCES

1. Centers for Disease Control and Prevention. Ending the HIV Epidemic in the U.S. (EHE): Program Overview and Progress. Updated 2024. Accessed June 2026. https://www.cdc.gov/endhiv/index.html

2. Kaiser Family Foundation. Status of State Medicaid Expansion Decisions: Interactive Map. Updated 2026. Accessed June 2026. https://www.kff.org/medicaid/issue-brief/status-of-state-medicaid-expansion-decisions-interactive-map/

3. Nardone A, Casey JA, Morello-Frosch R, Mujahid M, Balmes JR, Thakur N. Associations between historical residential redlining and current age-adjusted rates of emergency department visits due to asthma across eight cities in California: an ecological study. Lancet Planet Health. 2020;4(1):e24-e31. doi:10.1016/S2542-5196(19)30241-4

4. Krakower DS, Mayer KH. Engaging healthcare providers to implement HIV pre-exposure prophylaxis. Curr Opin HIV AIDS. 2012;7(6):593-599. doi:10.1097/COH.0b013e3283590446

5. Siegler AJ, Mouhanna F, Giler RM, et al. The prevalence of pre-exposure prophylaxis use and the pre-exposure prophylaxis–to–need ratio in the fourth quarter of 2017, United States. Ann Epidemiol. 2018;28(12):841-849. doi:10.1016/j.annepidem.2018.06.005Centers for Disease Control and Prevention. HIV Surveillance Report, 2022; vol. 34. Published May 2024. Accessed June 2026. https://www.cdc.gov/hiv/library/reports/hiv-surveillance.html