We can’t say we weren’t warned.

In summer 2021, it was reported that in January 2022, drugmaker Gilead Sciences would end a reimbursement program that helps fund prevention services at numerous HIV clinics. HIV advocates decried the move, noting that it would diminish uninsured clients’ access to pre-exposure prophylaxis, or PrEP, the daily pills and long-acting injections that prevent HIV. Gilead Sciences, for its part, has said the decision to change its reimbursement policy was a long time coming and arrived at after some clinics misused the funding.

Earlier this month, The Dallas Morning News checked in with the leaders of three HIV clinics in north Texas to see whether this change affected their budgets. It did. The CEOs reported that they’ve already lost about $20 million, money that would have been used for HIV prevention efforts. 

“The loss is pretty tremendous,” said John Carlo, MD, the CEO of Prism Health North Texas, adding that the clinic’s revenue dropped about $3.5 million last year. “We’re going to lose people who are going to need it the most.” The clinic offers fewer slots to clients seeking PrEP, and beginning April 1, Carlo said, the clinic won’t be able to cover the costs of services related to PrEP, such as lab tests and office visits.

Texas Health Action runs four clinics across the state. Its CEO, Christopher Hamilton told the Morning News that the nonprofit lost $9.2 million, about 53% of its revenue. Similarly, DeeJay Johannessen, CEO of Health Education Learning Project (HELP), said the center saw a revenue decline of 40% because of Gilead’s new policy.

AIDSVu.org, which creates interactive maps and graphics based on HIV-related data, offers a look a PrEP use nationally. In the below Facebook post from last summer, the groups writes that “AIDSVu released the first-ever publicly available state-level #PrEP use data & maps by race/ethnicity for 2012-2021, showing that PrEP use has increased 56% each year since its approval in 2012. However, disparities still exist.” For more on that, visit AIDSVu.org.

How did we end up with a nationwide PrEP funding system that is so precarious? A POZ article from July 2021 reported in part:

The situation stems from federal law 340B, which regulates drug pricing. As NBC News explains, 340B allows clinics that cater to uninsured or underinsured clients to obtain steep discounts on meds. The insurers, however, reimburse the clinics’ pharmacies for an amount closer to the drugs’ list price, leaving the clinics with extra cash. The clinics then use this surplus, referred to as the “340B spread,” to fund their services and pay for their uninsured clients.

Gilead Sciences, which manufactures Truvada and Descovy—the two meds approved by the Federal Drug Administration for PrEP as well as for HIV treatment—had operated under a similar agreement with clinics, providing free HIV meds and allowing the clinics to receive substantial reimbursements. The drugmaker, NBC News reports, said it is ending the program because of increasing costs.

Considering that a month’s supply of Truvada costs $1,842, HIV clinics stand to lose a staggering amount of funding.

Of note, most insurance covers PrEP, and a generic version of Truvada recently hit the U.S. market, but when 340B clinics prescribe generics, they don’t receive the vital reimbursement funds that keep them afloat.

(Since that article was published, the FDA has approved Apretude [cabotegravir], the first long-acting injectable for PrEP. For more about this drug, which is manufactured by ViiV Healthcare, click #Apretude.)  

Texas Health Action’s Hamilton told the Dallas Morning that the clinic is staying afloat by tapping rainy day funds, applying for more grants and seeking donations.

States that have refused to expand Medicaid, the federal health insurance program for low-income Americans, will likely feel the loss of Gilead funding the most. In states that have expanded Medicaid coverage, individuals qualify for coverage based on income (133% of the federal level) alone. To date, according to the Kaiser Family Foundation, 40 states (including DC) have expanded Medicaid, while 11, mostly in the South, where HIV is most prevalent, have not.

As of February 16, 2023, the states that have not expanded Medicaid are:

Alabama

Florida

Georgia

Kansas

Mississippi

North Carolina

South Carolina

Tennessee

Texas

Wisconsin

Wyoming.

This means the funding loss affects those most vulnerable to HIV and the clinics that serve them. This includes African-American, Latino and LGBTQ people and residents of the South. For example, in 2019, African Americans represented 13% of the U.S. population but 43% of new HIV cases; in the South, they accounted for 52% of HIV diagnoses. You can learn more about HIV among African Americans—and several other minority populations—by visiting the HIV/AIDS Basics on POZ.com and clicking on the “HIV in Specific Populations” section.

Led in part by advocacy group PrEP4All, a movement demanding a federal PrEP program has been gaining momentum for the past year. For more about this effort, see the June 2022 POZ article “Over 100 HIV Groups Urge Congress to Fund a PrEP Program” as well as the April 2022 POZ opinion piece “Equity-Driven Advocacy for a National PrEP Program for Uninsured People” by Jeremiah Johnson, Kenyon Farrow, Raniyah Copeland and Asa Radix.

 

Also during the past year, conservative efforts to torpedo PrEP funding have escalated. For background, see “Judge Rules That the Mandate to Cover PrEP for HIV Prevention Violates Religious Freedoms”—about a Texas lawyer who argues that requiring insurance to cover PrEP to prevent HIV amounts to forcing Christians to support homosexual behavior—and “Tennessee Rejects ‘Free Money’ from U.S. Government to Prevent HIV.”

 

To learn more about this HIV prevention, see the POZ Basics on Pre-Exposure Prophylaxis (PrEP) and click #PrEP, where you’ll find a collection of related articles, including: