Can the Ending the HIV Epidemic in the U.S. Initiative Succeed?
The Ending the HIV Epidemic in the U.S. (EHE) initiative is a promising program launched by the U.S. Department of Health and Human Services (HHS) in February 2019 with the aim of reducing new HIV infections by 75 percent by 2025 and 90 percent by 2030 (from a baseline of more than 38,000 in 2017). The roadmap for achieving the outlined goals of the EHE is based on four pillars: diagnose, treat, prevent, and respond.
While the EHE initiative set ambitious targets for ending the HIV epidemic in the United States in the context of a sound and sensible plan, it is at present off track. Three years on, at the midpoint of the first phase of EHE, which has a target of reducing new HIV infections to 9,250 people or fewer by 2025, is an opportune moment to assess the current status and challenges ahead. This commentary draws from a longer CSIS policy report on the initiative to be published in September, which includes a series of policy recommendations: meet people where they are; address flexibility in design and implementation; improve data, metrics, and accountability; and heighten political advocacy to ensure future funding.
The EHE initiative has three proposed phases, with the first focusing on 57 jurisdictions. This includes 48 counties plus San Juan, Puerto Rico, and Washington, D.C., which together account for more than half of new HIV diagnoses in the United States, and seven states with a substantial rural HIV burden.
Priority Jurisdictions for Phase I of the EHE Initiative
These high-priority jurisdictions were chosen using 2016 and 2017 data , targeting the regions that had the highest number of HIV diagnoses in those two years. The second phase is slated to begin in 2026, once new HIV infections have been reduced by 75 percent, with a focus on expanding local and federal efforts to address prevention, treatment, and care for HIV across the United States. Phase III will ultimately provide intensive case management to maintain the number of new transmissions below 3,000 per year.
The EHE initiative was unusual—both with respect to its ambition and with its emphasis from the start on health equity and building community engagement—and it has shown continued promise and resilience. The EHE initiative was also unexpected because it arose during the Trump administration, at a time when certain policies like the public charge rule, anti-immigrant crackdowns, decisions to permit discrimination against transgender people in healthcare settings, and workplace bias against LGBTQ+ people jeopardized access to HIV care and treatment, leading to increased distrust of federal authorities in the LGBTQ+ community. But the EHE initiative gained credibility for the expertise and standing of its early leaders, including Anthony Fauci (National Institute of Allergy and Infectious Diseases, or NIAID), Robert Redfield (Centers for Disease Control and Prevention, or CDC), and Brett Giroir (HHS), and has had bipartisan support from the outset. The Biden administration incorporated the EHE initiative into its renewed National HIV/AIDS Strategy and has continued to support its goals.
In its first few years, the budget for the EHE initiative lagged behind the program’s ambitions. In FY 2019, roughly $35 million was made available by reprogramming existing appropriations to jump-start the initiative. Although additional funds in subsequent fiscal years enabled EHE jurisdictions to expand services to people living with or at risk for HIV, the total in EHE funding was always less than the administration’s request and a small proportion of total federal funding for HIV/AIDS programs. The administration’s FY 2023 request for the EHE initiative is for $850 million, a $377 million increase over the FY 2022 enacted level (an additional 80 percent).
Although FY 2023 appropriations are not yet agreed, both the House and the Senate have signaled increases for the EHE initiative in their appropriations bills, an encouraging sign of continued bipartisan support—but they are still modest compared to the scale needed to achieve EHE’s ambitious goals.
The EHE initiative results to date are summarized in the table, drawn from the core indicators data reported by the CDC for 2017 and 2019 (with some preliminary data for 2021). These results reflect a complex mix of new and expanded programs across the 57 priority EHE jurisdictions. Some jurisdictions have been able to build on strong programs already in place, while others are just beginning to build out their response. As noted above, the first wave of funding targeted just a few of the localities. It took time for administrators to develop and refine plans, write proposals, and see funds flow to new initiatives. Much of the money has flowed through existing CDC and Health Resources and Services Administration (HRSA) infrastructure.
While all the indicators are moving in the right direction, the pace of change appears to be too slow to reach the goals established for 2025 and 2030. There were some early wins from March 2020 to December 2020 when the Ryan White HIV/AIDS Care Program saw 19,500 people who were newly diagnosed or recently reengaged in HIV care and treatment, which exceeded earlier estimates that the program would reach 18,000 people. Additionally, in the Bureau of Primary Health Care (BPHC) health center programs, over 389,000 patients received pre-exposure prophylaxis (PrEP) or PrEP- associated services and 2.5 million people received a HIV test (an increase of almost 1 million from the previous time period).
However, HIV diagnoses appear to be declining more rapidly than other indicators (a decrease of 14 percent between 2019 and 2021), but this is likely due more to disruptions in HIV testing and diagnosis from the Covid-19 pandemic, when many people avoided testing to comply with guidance on Covid-19 social distancing, than to a decline in the rate of new HIV infections. Indeed, the CDC reported sharp declines in HIV testing and other services between 2019 and 2020, which had an adverse impact on efforts to expand the EHE initiative. Finally, PrEP coverage remained more or less flat at around one in five of the people indicated for PrEP who had begun this preventive regimen.
Challenges and Opportunities for EHE
The EHE initiative is designed to expand and improve upon the U.S. domestic response to the HIV epidemic, with an emphasis on health equity. After decades of programmatic interventions, with an ever-increasing and more effective array of biomedical tools, the benefits of HIV prevention and treatment efforts are still not available to everyone. The EHE initiative, as outlined above, was intended to address the needs of key populations such as men who have sex with men (MSM), adolescent girls and young women, people who inject drugs, transgender individuals, and other vulnerable groups, by building programs with community input, providing flexibility to states and communities in using new federal funds, and using mandatory funding to try to improve national rates of PrEP coverage. The EHE initiative was envisioned to take into account not just biomedical dimensions of the HIV epidemic but also the social, economic, and behavioral determinants of health that lead to persistent inequalities in access to care and treatment. These determinants include structural racism, poverty, stigma and discrimination, homelessness and housing insecurity, food insecurity, lack of access to transportation, lack of access to health insurance, and substance use and mental health disorders.
Translating this comprehensive strategy into reality has proved difficult, since the EHE initiative got underway just as the Covid-19 pandemic swept the United States. The same healthcare institutions, community organizations, government agencies, and healthcare workers dedicated to addressing the needs of people living with and at risk of HIV infection found themselves inundated with the acute crisis of the Covid-19 pandemic. The stresses and strains that Covid-19 created in the U.S. healthcare system exacerbated underlying health disparities, with a disproportionate impact on the same communities of color and vulnerable populations that were already affected by the HIV epidemic.
The EHE initiative is off to a good start, but like any ambitious public health program, there are opportunities to learn by doing. Some elements of the EHE initiative are working well, while others would benefit from a course correction. There is a need for realism and patience in assessing what EHE is able to achieve, and in what time frame. The overall goals are important and achievable—if coordination and implementation can be improved across the EHE jurisdictions and lessons learned from those efforts are shared with other non-EHE jurisdictions nationwide. The following recommendations will help in that process of reconsideration and refinement.
Meet People Where They Are
Working with all stakeholders directly affected by the HIV epidemic in local contexts is critical to ensure that the needs and insights of those at the community level are central to strategy, planning, and implementation of the EHE initiative. This approach of community engagement should be adopted as a way of working in all EHE jurisdictions—it builds directly on the long-standing imperative among HIV community members of “nothing for us without us,” which has informed successful HIV interventions for decades. One way to operationalize this insight would be to provide targeted funding for community outreach—through community representatives, community health workers, social workers, and other key stakeholders—as an integral part of planning and design of all EHE implementation.
Address Flexibility in Design and Implementation
It is also important to respond flexibly to program requirements and find ways to shape implementation so that bureaucratic rules do not get in the way. Opportunities to redesign approaches and priorities range from simple tactics—for instance, do not distribute funds proportionate to population size in EHE jurisdictions, which may perpetuate the resource constraints in certain smaller counties—to more ambitious innovations like using AIDS Drug Assistance Program (ADAP) money to provide medical insurance, rather than just medications, which has been shown to be a cost-effective way of expanding access in Virginia. Additionally, financial incentives, which have helped to improve access to HIV prevention, care, and treatment in both East Baton Rouge Parish and Ward 86 in San Francisco, may be adaptable to other jurisdictions, so long as they are monitored for long-term positive improvements of retention in care and health outcomes.
To capture the social determinants of health affecting the lives of people living with and at risk of HIV infection, EHE jurisdictions—and the federal agencies supporting them—should be willing to try new approaches to improving wraparound services for vulnerable populations (including housing stability, food security, transportation, education, and childcare) to get people to clinics.
Improving Data, Metrics, and Accountability
What gets measured, gets done. This commonplace observation is apposite to the question of how the EHE initiative can put data to better use in guiding programmatic design and ensuring that EHE reaches it goals by 2025 and 2030. Two approaches will help to ensure that EHE can be held more accountable for results.
First, under the auspices of the Office of National AIDS Policy, EHE should begin to convene semiannual conferences to review the data and methodology and suggest ways to improve the monitoring and evaluation of the EHE initiative. These meetings should include not only the technical teams working on these issues at the federal, state, and local levels, but also representatives of the policy teams who work with them and the community-based stakeholder groups who have an interest in EHE outcomes. Building a culture of transparency and continuous improvement in understanding and refining the data at the core of the EHE initiative will help ensure that the results are more robust—and that learning from the entire EHE community is put to use to improve monitoring and evaluation efforts.
Second, a related effort could be put in place, one that again builds on learning from the global HIV movement, which has benefited from community-based monitoring efforts. Such community-based independent monitoring and evaluation efforts would complement, enrich, and inform the formal data efforts already under way, as well as build transparency and trust among the community of those affected by the EHE initiative’s efforts.
Heighten Political Advocacy to Ensure Future Funding
Finally, to encourage the persistent efforts of the complex network of individuals and institutions required to see the EHE initiative to a successful conclusion, renewed advocacy to raise visibility and awareness around the initiative and its goals will be critical. This advocacy agenda should begin with President Biden and Vice President Harris, each of whom has credibility in this area. But their advocacy alone is not enough. The EHE initiative will need the active engagement and support of governors, mayors, and state and federal legislators on a bipartisan basis. They will need to be educated, mobilized, and converted into active advocates. And of course, Congress will need to do its part by fully funding the EHE.
The EHE initiative should also provide earmarked funds for civil society organizations to build advocacy efforts to give voice to the needs of marginalized and vulnerable populations in EHE jurisdictions, ensuring that no one is left behind. Interested stakeholders—professional groups, providers, and regional, state, and local NGOs—should let HRSA, CDC, Centers for Medicare & Medicaid Services (CMS), other federal agencies, and their elected representatives know that EHE is important to them and that they expect to see appropriate and timely action taken to provide the resources required to achieve EHE’s goals by 2030. This is even more important given the need for funding to make up for the disruptions caused by the Covid-19 pandemic.
The EHE initiative still has the potential to transform the domestic HIV response, but it will require significant adjustments in policy, strategy, integration, inclusion, and resources to reach the goals of reducing HIV incidence by 75 percent in 2025 and 90 percent in 2030. If these changes are translated into reality between now and 2030, in part by implementing the recommendations given above, as noted in an article published in The Lancet, “the USA could indeed become a place where new HIV infections and AIDS deaths are rare, and where people at risk of either are provided with the services they need in safety and dignity, and with compassion.” This is a vision of the future of the U.S. HIV response that is worth fighting for.
Jeffrey L. Sturchio is a senior associate (non-resident) with the Global Health Policy Center at the Center for Strategic and International Studies (CSIS) in Washington, D.C. Mackenzie Burke is a program coordinator for the CSIS Global Health Policy Center. Maclane D. Speer is a research assistant for the CSIS Global Health Policy Center.
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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