Ending the HIV Epidemic Off to a Middling Start

By: Marcus J. Hopkins, Founder & Executive Director, Appalachian Learning Initiative

The Health Resources and Services Administration (HRSA)’s HIV/AIDS Bureau (HAB) released its inaugural Ending the HIV Epidemic (EHE) triannual report—Ending the HIV Epidemic in the U.S. Initiative Data Report—in December 2021 (HRSA, 2021). The findings contained within present a limited, clouded, and admittedly complicated portrait of a program that has been beset by setbacks, complaints about the selection process, and a global pandemic.

What is EHE?

EHE was announced in 2019 by the Trump Administration as a plan to “…end the HIV epidemic in the United States by 2030. The plan “…leverages critical scientific advances in HIV prevention, diagnosis, treatment, and outbreak response by coordinating the highly successful programs, resources, and infrastructure of many HHS agencies and offices” (Office of Infectious Disease and HIV/AIDS Policy, 2021). To achieve this goal, those who worked to develop EHE as a strategy developed a four-pillar approach:

1. Diagnose – diagnose all people with HIV as early as possible
2. Treat – rapidly prescribe Antiretroviral Therapy (ART) to people living with HIV (PLWH) to reach sustained viral suppression.
3. Prevent – prevent new HIV infections from occurring by using proven interventions, including Pre-Exposure Prophylaxis (PrEP) and Syringe Services Programs (SSPs)
4. Respond – respond to potential HIV outbreaks to get needed prevention and treatment services to people who need them (Office of Infectious Disease and HIV/AIDS Policy)

Once these policy goals were developed, EHE went about selecting “priority jurisdictions”—48 counties, Washington, DC, San Juan, Puerto Rico, and seven states that have a substantial rural HIV burden (AL, AR, KY, MS, MO, OK, & SC) (Figure 1).

Figure 1 – Map of Ending the HIV Epidemic Phase 1 Jurisdictions

Note: Office of Infectious Disease and HIV/AIDS Policy, 2020

Phase I jurisdictions were selected based upon HIV reporting data from 2017, including incidence, prevalence, and racial and ethnic demographic makeup. Once those jurisdictions were chosen, the vast majority of federal HIV funding was redirected away from a national approach to confronting HIV and to these jurisdictions.

The key strategies for addressing HIV in these jurisdictions include the following:

• Implementing evidence-informed and emerging intervention strategies shown to increase linkage, engagement, and retention in care focused on those not yet diagnosed, those diagnosed but not in HIV care, and those who are in HIV care but not yet virally suppressed;
• Re-engaging people with HIV who were in care, but are no longer in ongoing care and are not virally suppressed.
• Providing technical assistance and systems coordination to support effective strategic plans and activities to successfully implement the new initiative; and
• Expanding workforce capacity through the efforts of the AIDS Education and Training Centers (AETCs).

The Findings of the Report

The data presented in the HRSA report cover March 2020 through December 2020, broken into two reporting periods—March 2020 through August 2020, and September 2020 through December 2020. This was selected because funding was awarded to Phase I jurisdictions in March 2020. It is noted that subsequent reports will represent a full calendar year. $63 million was released to the 47 HRSA HIV/AIDS Bureau (HAB), two technical assistance providers, and 11 Ryan White HIV/AIDS Program (RWHAP) AETCs. HRSA anticipated that the HAB EHE recipients would serve 18,000 new or re-engaged people with HIV during the initial year.

According to the HRSA report, HAB EHE-funded service providers served 11,139 new people and 8,282 re-engaged people, totaling 19,421 clients—meeting and exceeding the goal of 18,000 new or reengaged clients by 7.9%.

These data include all clients served by funded providers. When controlled for EHE initiative-specific services, 6,381 clients were served, of which 68.4% were new or re-engaged clients. In 2020, of the 45,880 total clients prescribed ART, just 21.5% were new or re-engaged in care and treatment (HRSA).

Limitations of the Data

First and foremost, it must be mentioned that the rollout of the EHE initiative was very heavily impacted by the onset of the COVID-19 pandemic. As the U.S. nears the end of two calendar years of pandemic-related service reductions, social distancing, remote services implementation, and temporary or permanent site closures. These conditions created a set of hurdles that required on-the-spot revisions and improvisations that potentially limited the ability of jurisdictions to plan and implement the programmatic offerings for which they were funded.

As to the report, itself, HRSA openly admits that these data are limited to just the EHE-funded jurisdictions and are not reflective of overall trends across the nation. Because these providers are already providing services, the data they provide includes all of their clients, not just those served using EHE funding. As such, the Triannual Module data cannot be used to estimate the specific costs associated with serving clients using 2020 EHE funding. 

Additionally, no demographic or other characteristic data are submitted, meaning that it will be difficult to try to determine how EHE is actually impacting PLWH at the demographic level (e.g., White, Black, Hispanic).

And, because the data are reported in aggregate, it is not possible to de-duplicate client counts, meaning that the report may overestimate the number of unique PLWH served.

Perhaps the most damning lack of evidence in this report is that none of these data are broken into funding jurisdictions. Essentially, there’s no way to see how each jurisdiction is performing. This means that it is entirely possible that these reports could potentially originate from just the metro regions that already see the bulk of new and re-entering PLWH. Without these detailed data breakdowns, we have no way to see whether or not jurisdictions are producing results.

Criticisms of the EHE Approach

One sentence that causes concern in the Comments section of the HRSA report is the following:

"Without this EHE initiative, new infections will continue and could increase, costing more lives and the U.S. government more than $200 billion in direct lifetime medical costs for HIV prevention and medication."

This statement is indicative of what many advocates feel to be the primary issue with EHE: its insistence that the EHE approach is the definitive approach to addressing HIV. To be fair, this type of hubris and “this is the only way” verbiage was a consistent feature of the Trump Administration: “Only I can fix America;” “Only this trade deal will fix our trade deficit.”

Since the launch of EHE, HIV advocates across the country have raised significant concerns about several aspects of the strategy:

• If the purpose of EHE is to increase testing and surveillance, why are the majority of resources going to jurisdictions that already received considerable federal HIV funding resources?
• If funding is released in phases, what happens to HIV funding for jurisdictions that are not included until later rounds?
• What measures are in place to determine if EHE funds are being properly and effectively used in the selected jurisdictions?
• Are new funding opportunities always going to be restricted to Phase I jurisdictions?
• Does the “Respond” pillar actually function?
• While data do show that HIV has disproportionately impacted minority communities, particularly Black and Hispanic communities, they also show that HIV disproportionately impacts people with lower incomes. With that in mind, why has “poverty” been eliminated as a criterion in favor of focusing almost entirely on racial and ethnic minority demographics?

In this author’s experience, whenever those responsible for putting together or running the EHE program are faced with these questions, they tend to fall back on their methodology, rather than addressing either the problems that exist with EHE or appropriately resourcing jurisdictions with emerging HIV outbreaks if they are not included.

The Failure of EHE—A Case Study

An excellent case study of this is the state of West Virginia. Since the beginning of the HIV epidemic in 1981, West Virginia has been considered a low-incidence state, averaging 77 new HIV diagnoses per year between 2013-2017. Beginning in 2018, West Virginia began experiencing a series of HIV outbreaks related to Injection Drug Use (IDU). By 2019, the number of new HIV diagnoses increased by 92% to 148 new diagnoses, of which 61.5% were directly related to IDU (Office of Epidemiology and Prevention Services, 2022).

By all accounts, West Virginia is the ideal jurisdiction for the EHE initiative. A primarily rural state, West Virginia has been the poster child for public health disasters: it has led the nation in drug overdose deaths, opioid addiction, Hepatitis A, B, and C diagnoses, and now has the highest rate of IDU-related HIV diagnoses in the United States. It also has virtually no statewide HIV testing and surveillance infrastructure. What complicates the situation is that West Virginia is one of the most chronically underfunded states. 

And yet, West Virginia was not chosen to be a Phase I jurisdiction. Because the data used were from 2017, when West Virginia was not yet experiencing an outbreak, the state was not considered. However, even by current standards for newer funding announcements, West Virginia meets neither the threshold for new diagnoses (200) nor the racial and ethnic minority demographics—minorities make up just 4% of West Virginia’s population— that these announcements require.

When it became clear that West Virginia was experiencing concurrent HIV outbreaks, a West Virginia public health advocacy organization, the Community Education Group (CEG), approached those in charge of EHE, Dr. Jonathan Mermin at the Centers for Disease Control and Prevention (CDC), Health and Human Services (HHS), and numerous other agencies to try to get resources for the state to address these outbreaks. What they discovered was that the problem was deemed not severe enough for intervention and that the “Respond” pillar of EHE applied only to current phase jurisdictions. Moreover, West Virginia was not expected to receive HIV funding from EHE until 2025, when Phase II funds will be released.

In the end, it took nearly three years of constant needling and finally national press attention to get the CDC to return to West Virginia. Even then, the solutions they recommended came with no funding attached and relied upon harm reduction responses, such as SSPs, that, thanks to a state statute passed in 2021, are under such intense scrutiny and regulations that a significant number of the health department-run SSPs are closing.

How to Address These Issues

West Virginia is just one example of how EHE fails to address the real-world needs of PLWH and the jurisdictions that serve them. One of the primary failings of EHE is that it directs funding to jurisdictions that have, over the course of the past forty years, received the bulk of federal and private HIV funding: Los Angeles, San Francisco, New York City, Atlanta, and other metropolitan areas—areas of the country where the majority of HIV infections have occurred over the past forty years.

This is not to say that PLWH in these areas are not deserving of funding and services; they absolutely are. However, the U.S. has spent countless millions in these areas building testing, treatment, and services infrastructures that, while not perfect, exist. The inclusion of the seven states with a rural HIV burden has always seemed a bit like an afterthought.

In response to this, supporters of EHE consistently argue, “We’re going where the data lead us.” This argument is hard to refute because it is true—they are going where there are available data to lead them. This was the case with West Virginia: in a state with no surveillance infrastructure, how do we identify and respond to emerging trends?

If the purpose of EHE is to build those infrastructures across the country and reach into areas with the existing social determinants of health that often predict the emergence of infectious disease outbreaks, such as HIV and Hepatitis C (HCV). In fact, it is this point that makes the selection of the EHE counties so confusing:

A 2016 report released in the Journal of Acquired Immune Deficiency Syndrome identified 220 counties that were “…vulnerable to a rapid spread of HIV if introduced, and new or continuing high rates of HCV” (Van Handel, et al., 2016). Of the 220 counties identified in that report, with the exception of the 7 entire states that were selected, none of those counties identified were targeted with EHE funds (HRSA).

This is a problem. The way to solve it is to begin directing a greater proportion of federal HIV resources to those counties in order to build infrastructures in order to begin laying the groundwork to prevent those worst-case scenarios.

This isn’t a new problem. It is one that has existed since the beginning of the HIV epidemic which, after forty years, is now just ‘endemic.’ We have always directed the majority of resources to where the majority of people are located because that is where the data lead.

In order to address this, we must decide to move away from the model of being reactive to one where we are proactive. When these smaller jurisdictions are handed large sums and expected to upscale without having a clear pathway or the long-term resources to do so, the infrastructure will never be solid. Even if they receive Phase I dollars, the majority are going to large jurisdictions to prop up their existing systems, rather than to those that need to build theirs from scratch.

Does this mean that we “rob Peter to pay Paul”? Sadly, the fiscal reality is that there aren’t a lot of great solutions. We can:

1. Massively increase total HIV funding at the federal level, give the new additional funds to these vulnerable jurisdictions, and leave HIV funding in the metro areas at their existing levels, or
2. Live with the reality that a massive increase is highly unlikely and redirect a percentage of the funds currently allocated and awarded to metro areas to vulnerable jurisdictions, essentially telling metro areas to do more with less.

Neither of these scenarios is perfect. Then, again, neither is the existing funding mechanism under EHE. What is clear, however, is that we need yet another rethink about how we’re approaching HIV in the United States, because EHE does not appear to be bearing the fruit it promises.

But maybe the critics are wrong. Maybe, if we give it time, the problems will self-correct. Perhaps, with targeted interventions to help those struggling Phase I jurisdictions, we can right this ship. Given the current political climate in Washington and the increasingly volatile climates in statehouses around federal-level responses to public health crises, it is unclear as to whether or not a rethink will even be possible.

References:

• Health Resources and Services Administration. (2021, December). Ending the HIV Epidemic in the U.S. Initiative Data Report 2020. Rockville, MD: United States Department of Health and Human Services: Health Resources and Services Administration: Data: Data Reports and Slide Decks. https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/2020-hrsa-ehe-data-report.pdf
• Office of Epidemiology and Prevention Services. (2022, February 10). HIV Diagnoses by County, West Virginia, 2019-2022. Charleston, WV: West Virginia Department of Health and Human Resources: Office of Epidemiology and Preventions Services. https://oeps.wv.gov/hiv-aids/Documents/Data/WV_HIV_2019-2022.pdf
• Office of Infectious Disease and HIV/AIDS Policy. (2020, November 03). Priority Jurisdictions: Phase I. Washington, DC: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV [dot] gov: Federal Response. https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/jurisdictions/phase-one
• Office of Infectious Disease and HIV/AIDS Policy. (2021, June 02). What Is Ending the HIV Epidemic in the U.S.?. Washington, DC: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV [dot] gov: Federal Response. https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview
• Van Handel, M. M., Rose, C. E., Hallisey, E. J., Kolling, J. L., Zibbell, J. E., Lewis, B., Bohm, M. K., Jones, C. M., Flanagan, B. E., Siddiqi, A. -E. -A, Iqbal, K., Dent, A. L., Mermin, J. H., McCray, E., Ward, J., & Brooks, J. T. (2016, November 01). County-Level Vulnerability Assessment for Rapid Dissemination of HIV or HCV Infections Among Persons Who Inject Drugs, United States. Journal of Acquired Immune Deficiency Syndromes, 73(3), 323-331. https://doi.org/10.1097/QAI.0000000000001098

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.