Ending the AIDS Epidemic: Are We Doing Enough to Reach Underserved Populations?

The U.S. government adopted an ambitious plan in 2019, Ending the HIV Epidemic in the U.S. (EHE), with the goals of reducing new HIV infections by 75 percent in five years, and by 90 percent in 10 years. But progress has been mixed. With a target of 9,025 new infections or fewer by 2025, EHE is off track to reach its targets, with an estimated 34,800 new infections in 2019.

Why is the glass only half full? If the goal is to end the AIDS epidemic, is enough being done to reach underserved populations? Clearly the answer is no. Despite innovations in treatment and prevention tools—with medications that are remarkably effective, easy to administer, and with low toxicity—the United States is falling far short of reaching everyone at risk of HIV infection. Leaving aside the disruptions that Covid-19 has caused in HIV/AIDS health services (with fewer in-person options, a decline in testing, and overstretched and stressed healthcare providers at all levels), the answer lies in better understanding how social, structural, economic, and political factors impair (or impede) access to care for key populations and what the feasible solutions might be.

The renewed National HIV/AIDS Strategy (NHAS) notes that “structural inequities have resulted in racial and ethnic health disparities that are severe, far-reaching, and unacceptable.” That is an important insight—but to understand how to address these issues effectively, it is important to probe more deeply into the following questions: How are inequities continuing to drive HIV transmission? What can be done to remove structural barriers to HIV treatment and care that burden vulnerable populations disproportionately? What would it take to implement an integrated program of HIV prevention in the United States that responds to the changing epidemiology of the epidemic and societal, health system, and political barriers, and also leaves no one behind?

Sadly, these are chronic structural problems that have bedeviled HIV care in the United States (and elsewhere) across the past four decades. This suggests the need for humility in thinking that there are quick fixes. Solutions, however, do exist, if there is sufficient political will and sustained commitment over time—and a willingness to build new approaches that are inclusive, person-centered, and reflect the diversity of needs and experiences of the communities of people living with HIV.      

The State of HIV Care and Treatment Today

Wafaa El-Sadr, Kenneth Mayer, and Sally Hodder wrote a memorable article in the New England Journal of Medicine in 2010 titled “AIDS in America—Forgotten but Not Gone,” in which they pointed out that HIV prevalence in key subpopulations in certain U.S. cities like New York and Washington, D.C., was as high as some African countries with generalized epidemics. They highlighted the need to focus on HIV as a major health threat in the United States—and how it affected disenfranchised communities disproportionately. These stark realities are still true today, as recent data on the U.S. HIV epidemic from the Centers for Disease Control and Prevention show.

Approximately 1.2 million people in the United States are living with an HIV infection, of whom an estimated 13 percent are unaware of their HIV status. As noted above, there were an estimated 34,800 new HIV infections in the United States in 2019, and still some 15,815 deaths that year from HIV/AIDS (the most recent year comprehensive national data is available).

In 2019, African Americans represented 13 percent of the U.S. population but accounted for 44 percent of new HIV diagnoses. Hispanic/Latino people represented 18 percent of the U.S. population but accounted for 30 percent of new HIV diagnoses. Gay, bisexual, and other men who have sex with men (MSM) are the population most affected by HIV in the United States, accounting for 69 percent of new HIV diagnoses in 2019. Black and Hispanic/Latino gay and bisexual men were even more disproportionately affected—a consequence of facing greater barriers to HIV care and preventive services. 

The incidence rates among people aged 13–24 and among transgender people are increasing, not decreasing. Women account for about a fifth of new infections, but their vulnerability varies across racial and ethnic groups and risk profiles. These statistics stem predominantly from unequal access to care and treatment, with widespread variation depending on location and income. The reality of living with HIV in the U.S. healthcare system is that many people in underserved populations do not believe it is even possible to obtain access to the healthcare services they need, or that health practitioners care about them. To have a reasonable hope of ending the HIV epidemic in the United States, this situation has to change. The resignation and alienation that exist within the communities in the United States most vulnerable to HIV infection must be acknowledged if progress is to be made.

The Health System and HIV Transmission

Four decades into the HIV epidemic, one lesson learned is that encouraging people living with HIV or at risk of HIV infection to engage with the healthcare system and to take advantage of care and treatment resources available to them has led to significant improvements in health outcomes. With the range of antiretroviral treatments and prevention tools now available, and the knowledge that undetectable does not mean untransmissible, epidemic control should be possible. Yet overall, less than 60 percent of people living with HIV have undetectable viral loads and pre-exposure prophylaxis (PrEP) is only accessible to 23 percent of the population.

All too often, the health system makes it difficult for people living with HIV to achieve viral suppression and persist with their treatment—clinics may be located too far away for people who cannot afford transportation or childcare, clinic schedules may not accommodate the needs of homeless people, and many HIV-positive people cannot afford access to care, even if they have physical access to HIV/AIDS services. And there is significant mistrust and discrimination in the health system among some key populations: transgender individuals, for instance, often find that “LGBTQ-friendly” services often only are friendly toward white, cisgendered, gay males.  

One relative bright spot among the statistics is that the Ryan White client population in the United States had higher viral suppression rates on average than the overall U.S. HIV population in 2019—for MSMs, Black/African American women, people who inject drugs, and transgender women, the viral suppression rate is greater than 82 percent; for clients in unstable housing it is 74.5 percent; and for youth (13–24) it is 79.4 percent. This compares to a rate of 66 percent in the overall U.S. HIV population. Interestingly, by 2021, nine PEPFAR countries had already met the global target of 73 percent of people living with HIV who have suppressed viral loads: Botswana, Cambodia, Eswatini, Namibia, Rwanda, Thailand, Uganda, Zambia, and Zimbabwe. This strongly suggests that programs that offer more wraparound and pro-poor services for people living with HIV have higher success rates.

An inescapable conclusion is that ending the HIV epidemic in the United States requires meeting people where they are and tailoring prevention, care, and treatment services to their needs, not the system’s. Health policy choices are embodied in the practices of government institutions that are responsible for public health, yet these often neglect to pay attention to the differing needs of key populations living with and at risk of HIV infection. Rather than providing for the entire social network that supports care and treatment for these populations (including stable housing, transportation, food security, education, childcare, and employment), the healthcare system places hurdles between individuals, families, and the care they need. Policies, moreover, are often followed by resource allocation decisions that may favor urban over rural areas, or misalignment of incentives that turns pre-authorizations and approvals into barriers to care, rather than facilitators of access to care and treatment.  

Leaving No One Behind: Prospects for Developing an Integrated and Holistic HIV Prevention Program in the United States

The United States needs to take a more holistic view of the needs of people at risk of HIV infection and be willing to tackle elements of structural racism, homophobia, and transphobia in healthcare institutions. This point is reinforced by the findings of a recent study published in The Lancet on international disparities in Covid-19 outcomes and the factors that explain them in 177 countries. As the authors put it in a Wall Street Journal op-ed, “Covid is less deadly where there is trust.” There was a strong correlation between trust in government and trust in fellow citizens and the adoption of recommended public health behaviors and relative success at fighting the Covid-19 pandemic.  

These findings on trust are relevant to the challenges of ending the HIV epidemic in the United States. Building trust in and with underserved communities would encourage people living with and at risk of HIV infection to seek prevention, care, and treatment services. On the institutional side, providing flexibility and incentives at the state and local levels to design inclusive and equitable solutions that are responsive to the needs of different underserved communities would clearly help to improve uptake of PrEP and sustainable viral suppression. Combined with community-based monitoring and private sector engagement, overburdened health facilities might find that they are able to reach more people and improve their health in measurable ways.

Policy Recommendations

  1. Improved Data: Just as Mayer, El-Sadr, and Hodder pointed out over a decade ago, a better understanding of the “sociocultural dynamics that facilitate [HIV] transmission” is needed. The starting point for this should be better data on the nature and extent of the HIV epidemic in the United States. CDC statistics are more than two years out of date, which makes it difficult to follow a fast-moving epidemic. At the same time, aggregate figures (even at the state level) obscure the dynamics of what’s happening at the local level—and it is notoriously difficult to capture the behavioral, social, structural, and economic determinants of the health of different underserved populations through the usual public health surveillance data. A new approach—drawing on the insights and engagement of disenfranchised and directly affected communities—would offer a clearer picture of the state of the epidemic and provide a better guide for planning and action. There are positive developments along these lines in the more granular data that EHE jurisdictions are collecting and publishing, but there seems to be no overarching effort to create a data architecture that reflects the changing nature of the U.S. epidemic in all its relevant dimensions. And new approaches to data collection should also include agreed-upon metrics to capture both health inequities and accountability for progress. The provisions in the new PREVENT Pandemics Act outline plans for better standards, quality, timeliness, and transparency in public health data are a step in the right direction.

  2. “Whole-of-Society” Framework: There is also a need for a comprehensive approach to bridging the sensible and aspirational aspects of the NHAS to a framework for action that involves a “whole-of-society” approach. The EHE initiative is a good starting point, focused on the 50 jurisdictions that account for more than 50 percent of new HIV infections in the United States, with community advisory panels that draw on the knowledge and skills of advocates and local community members in addition to the public health professionals, case managers, and clinicians who are on the frontlines of HIV prevention, care, and treatment. But there seems to be no national coordinating mechanism that links policy planning at the federal and state levels with the vital work that happens in affected communities. It is known from work on the social determinants of health that about 80 percent of the most effective health interventions occur outside the clinic—and this is certainly true with HIV infection, where behavioral trends, access to housing and education, social mobility, employment, and underemployment all have an impact on the risk that individuals face of acquiring an HIV infection. What would such a framework look like? A good place to start would be to build not from the top down, but rather from the organizing efforts within the HIV community.

    A conceptual scheme that could be useful for thinking about how to set up such a national coordinating mechanism is the E4As model that Emilia Aragón de León and colleagues recently proposed in The Lancet for “Beyond building back better: imagining a future for human and planetary health.” They start with engagement, the underpinning of successful change, involving all stakeholders, sectors, and levels. The four A’s then follow—access, align, accelerate, and account. Taking an inclusive approach to aligning efforts around a common set of goals to improve access to HIV care and treatment, accelerate progress toward the goals, and make sure that no group is left behind, coupled with an accountability framework to measure progress and identify bottlenecks, would certainly help in moving toward ending the HIV epidemic in the United States.

  3. Person-Centered Care. Finally, calls for more and better data and a new framework for action, while necessary, are not sufficient to move the needle. Policy refinement—as important as it is—should not be confused with action. To that end, there are several structural barriers in the way that U.S. public support for people living with HIV is administered that can and should be fixed. While this may present political and economic challenges, the risks of inaction far outweigh the benefits of addressing such issues as improving access to PrEP for people in the Ryan White program or providing more of a “one-stop shop” for those seeking support. The nurses and doctors who provide such care daily surely know the policies that need to be changed, as do the clients in their clinics who are living with HIV and the care managers with whom they interact regularly. Administrators should start working with affected communities to rethink how AIDS care and services are provided, with an eye toward what works best to improve the health of the people they serve—and adjust programs to meet that goal. There is growing evidence that what works best—as seen, for instance, in the relative success rate of achieving viral suppression among Ryan White clients—is adequately resourced programs that feature locally directed, outcomes-oriented, and wraparound services. Applying these lessons nationally will require flexibility, transparency, and accountability—characteristics sometimes in short supply in most bureaucracies. But, again, the benefits in improved health for people living with or at risk of HIV will more than repay the challenges involved in changing the system.

Jeffrey L. Sturchio is a senior associate (non-resident) with the Global Health Policy Center at the Center for Strategic and International Studies in Washington, D.C.

Commentary is produced by the Center for Strategic and International Studies (CSIS), a private, tax-exempt institution focusing on international public policy issues. Its research is nonpartisan and nonproprietary. CSIS does not take specific policy positions. Accordingly, all views, positions, and conclusions expressed in this publication should be understood to be solely those of the author(s).

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Jeffrey Sturchio
Senior Associate (Non-resident), Global Health Policy Center