LGBTQ Agenda: State of HIV Care report finds workforce burnout, PrEP awareness are persistent issues

  • by John Ferrannini, Assistant Editor
  • Tuesday December 5, 2023
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Elizabeth Moore, Ph.D., is the director of health services, research, and evaluation for HealthHIV, which recently released a report on the state of HIV care in the U.S. Photo: Courtesy HealthHIV
Elizabeth Moore, Ph.D., is the director of health services, research, and evaluation for HealthHIV, which recently released a report on the state of HIV care in the U.S. Photo: Courtesy HealthHIV

Released ahead of World AIDS Day, HealthHIV's annual report on the state of HIV care in America found that the situation is improving but that workforce burnout and the effects of HIV criminalization are persistent challenges.

The report also said that PrEP awareness is a top priority; this on the heels of federal Centers for Disease Control and Prevention numbers showing wide racial and ethnic disparities in who is taking PrEP, as the Bay Area Reporter reported last month.

"When asked what the state of HIV care is in one word, respondents primarily stated: 'improving,' followed by the 'better,' 'progressing,' and 'evolving,' suggesting that most agreed that despite improvements, there is still room for growth," the report stated.

The report's results were based on answers to a survey from "1,031 diverse and representative health care providers, spanning a broad spectrum of racial, ethnic, and sexual identities and hailing from various geographic, educational, and income backgrounds," the report stated.

Elizabeth Moore, Ph.D., the director of health services, research, and evaluation for HealthHIV, stated, "as an HIV care provider myself, the challenges identified by respondents resonate with me." HealthHIV is a national nonprofit based in Washington, D.C. that works with organizations, communities, and health care providers to advance effective prevention, care, and support for people living with, or at risk for, HIV and HCV through education and training, technical assistance and capacity building, advocacy, and health services research and evaluation.

"These findings provide critical insights into the state of HIV prevention and care from the perspective of the workforce, who are on the ground doing the work and telling us they need support," Moore stated in a news release. "As we move beyond the COVID-19 pandemic, it is imperative that we prioritize the well-being of HIV providers and work towards eliminating the barriers that impede their efforts to provide the best care."

Carl Schmid, a gay man who is the executive director of the Washington, D.C.-based HIV + Hepatitis Policy Institute, concurred with the findings about burnout.

"HIV providers, like so many others providing health care, are burning out and aging," Schmid stated. "We need innovative ways to provide HIV care and prevention services. One such way is permitting pharmacists, who are located in all parts of the country, to be allowed to offer some services. California has taken some steps in this arena, and other states are also considering it."

One of those moves was Senate Bill 159, authored by gay state Senator Scott Wiener (D-San Francisco) and gay former Assemblymember Todd Gloria (D-San Diego) that authorized pharmacies to furnish up to a 60-day supply of PrEP without a prescription. It was passed in 2019 and signed by Governor Gavin Newsom. (Gloria is now the mayor of San Diego.)

On December 6, after the initial publication of this report, Wiener returned a request for comment, stating "HIV criminalization leads to more HIV infections and worse health outcomes for people living with HIV. These criminal laws make no sense and need to be repealed."

However, this year, as the B.A.R. reported, Newsom vetoed a bill that would have closed loopholes and strengthened protections in existing law to ensure that California health insurers continue to provide free and complete coverage for preventive services like PrEP. As the B.A.R. reported, Newsom did so over concerns the legislation, AB 1645 authored by gay Assemblymember Rick Chavez Zbur (D-Santa Monica/West Hollywood), would result in higher premium costs for consumers.

Also in the recent legislative session, Wiener had sought to expand that access under SB 339. But he pulled the bill in September after the Assembly Appropriations Committee inserted language into it he considered to be a "poison pill amendment" counter to his legislative aim of expanding access to the HIV prevention medication known as PrEP. As the B.A.R. reported, the bill sought to increase the amount of PrEP that pharmacists are authorized to provide without a doctor's prescription.

Continued Schmid: "While I am pleased that providers believe that HIV care is improving, we know that there is a severe shortage of HIV providers, particularly among the communities most impacted by HIV. People with or at risk of HIV prefer to go to providers that look like them."

Jorge Roman, a gay man who is the senior director of clinical services for the San Francisco AIDS Foundation, stated that the findings "underscore the intersecting challenges of preventing new HIV infections and supporting the complex needs of people living with HIV."

"Due to existing disparities that affect the efficacy of prevention efforts and the maintenance of HIV care engagement for racial and ethnic minorities, people who use substances, and unhoused individuals, our workplaces a primary emphasis on eliminating stigma and ensuring equitable access to HIV services to achieve the goal of ending the HIV epidemic," he stated.

The B.A.R. also reached out to the San Francisco Department of Public Health and the San Francisco Community Health Center seeking comment for this report but none returned comment by press time.

Six key findings

The report listed six key findings. The first was that burnout is persistent across the HIV workforce.

"More than one-third (34.8%) of respondents reported high levels of burnout — defined here as feeling emotionally drained from work at least once a week or more — and 55.2% had considered quitting their job in the preceding six months," the report stated. "Respondents indicated one of the top ways the COVID-19 pandemic impacted healthcare delivery was by increasing staff burnout (50.4%). Relatedly, burnout was ranked as the second most significant workforce issue facing responding organizations (52.1%) along with workforce shortage (53.4%) and increased workload (51.1%)."

Another was that among the general public there is a lack of awareness about the effects of HIV criminalization in underserved communities. Seventeen states and one United States territory have HIV criminalization statutes. Another Wiener bill, SB 23, modernized California law so that criminal penalties based on HIV status can't be imposed unless the defendant was found to have acted with the intent to harm somebody else. Sentencing enhancements still apply to people living with HIV who commit underlying sexual assaults, however. Former governor Jerry Brown signed that bill in 2017.

"Only 40% of HIV providers are aware of HIV criminalization policies," the report found. "Of those, 75.5% express concerns about the impact of these policies on the health of their clients/patients. Importantly, a considerable proportion (52.3%), have observed that HIV criminalization disproportionately affects marginalized communities, including people of color, LGBTQ+ individuals, and people who use drugs. However, only 8% of patients routinely express concerns about HIV criminalization."

The report also found that the HIV workforce believes barriers to PrEP need to be addressed and awareness greatly increased.

PrEP, or pre-exposure prophylaxis, refers to the use of antiviral drugs to prevent people exposed to HIV from becoming infected. The pill Truvada was first approved for PrEP use in 2012 by the U.S. Food and Drug Administration; since then the FDA has also approved the pill Descovy for some groups, and the drug Apretude as an injectable treatment.

"Efforts should be made to communicate the awareness and benefits of PrEP to individuals at risk for HIV and PLWH [people living with HIV], as their voices can play a pivotal role in reaching community members and sexual partners who could benefit from PrEP," the report stated. "Stigma, lack of knowledge, bias among health care workers, and difficulties accessing care continue to be significant barriers to PrEP uptake.

"Despite these challenges, the number of PrEP users in the U.S. has steadily increased since 2012, reinforcing the importance of ongoing efforts to promote PrEP awareness and accessibility," the report continued.

As the B.A.R. recently reported, CDC numbers show that little over one-third of people nationwide who could benefit from PrEP were on it in 2022, and there continue to be major disparities among white, Black, and Latino Americans. Numbers from San Francisco show a much larger proportion of people on PrEP than nationally, and show the same racial and ethnic disparities, but less dramatically so.

In 2021, 78% of eligible whites were on PrEP, and in 2022 that rose to 94%. However, among eligible Black Americans — only 11% of whom were on PrEP in 2021 — it's only 13%. Uptake among eligible Latino Americans rose 21% to 24%, and among eligible women from 12% to 15%.

The other key findings were that limited familiarity with status-neutral care delays integration of prevention and treatment settings; that prescribers are most concerned about managing HIV treatment with competing priorities including aging, comorbidities and behavioral health; and that retention in HIV care is often challenging due to mental health issues, substance use, and housing instability.

LGBTQ Agenda is an online column that appears weekly. Got a tip on queer news? Contact John Ferrannini at [email protected]

Updated, 12/6/23: This article has been updated with comments from state Senator Scott Wiener.

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