In June 2020, a federal law went into effect mandating that insurance provided through the Affordable Care Act must cover the HIV-prevention medication known as PrEP (pre-exposure prophylaxis). The law requires that all preventative services with an "A" or "B" rating from the US Preventive Services Task Force be covered by public insurance programs.

This seemed like a win for LGBTQ+ people, who make up a higher percentage of Medicaid recipients than their heterosexual counterparts, according to KFF, an independent source for health policy research. However, four years later, loopholes in coverage are causing some to still shovel out thousands a month to cover their PrEP.

Chris Pitts, like many Washingtonians, is currently covered by Kaiser Permanente. After his doctor prescribed him PrEP, Pitts discovered that the medication caused a horrible reaction when combined with his anxiety, depression, and ADHD meds. "When I take Truvada or Descovy, I tend to throw those up immediately, pretty violently. I can't keep it down one way or another," Pitts told the SGN. Together with his doctors, Pitts started taking PrEP injections once every two months. The new method caused no side effects — but it is not covered by his insurance program.

"I work in food service right now. I don't make a lot of money," Pitts said. "The copay at billing can be around $2,000. So, every other month I just don't get a paycheck."

Since starting injectable PrEP, Pitts looked around to see if the medication might be covered by other insurance plans. What he found was disheartening. Currently, none in Washington state cover the entire cost of injectable PrEP. There are cost-effective programs that can help LGBTQ+ get the medications they need, but whenever he seeks their services, Pitts feels as though he's taking advantage of a program that could benefit others.

"I have been looking into [copay assistance programs], but I'm a little bit frustrated at the same time, because those are resources that other people could benefit from, especially when the Affordable Care Act says, very specifically, that PrEP is supposed to be covered at 100%," Pitts said.

PrEP and insurance
In the United States, insurance companies are run like private businesses, which means profit is considered before decisions are made. Min Hwan Ahn, an insurance law attorney at Anh and Sinowitz, explained the reasoning behind many companies' resistance to covering injectable PrEP.

"Insurance companies are risk-oriented businesses," she told the SGN. "They calculate their operational models based on statistical data, risk assessment, and financial stakes. Typically, injectable pre-exposure prophylaxis used for preventing HIV/AIDS might not be covered under some insurance policies, primarily due to reasons related to its newness in the market and the lack of longitudinal data establishing its long-term effectiveness and safety."

According to KFF, Apretude, the only approved injectable PrEP medication currently on the market, should be covered by all insurance plans by 2025. Until then, patients like Pitts will continue to have to pay nearly $12,000 a year out of pocket. "Choosing between my mental health and whether or not I'm able to have a sex life is not a choice anyone should be having to make," Pitts said.

While many hope to see insurance coverage for PrEP expanded in the coming years, a case against insurance coverage of the medication has picked up steam in Texas. In 2022, a Christian business owner in Texas raised the argument that the Affordable Care Act's requirement of private insurance companies to distribute HIV-preventative medication was unconstitutional and violated his religious rights.

The case found its way to US District Court, where Judge Reed O'Connor ruled in favor of the business owner, striking down the section of the Affordable Care Act that required no-cost coverage for such services. The federal government appealed the decision, leading to an administrative stay on the ruling. Oral arguments in the case were heard at the beginning of March, but the Fifth Circuit has yet to issue a ruling. Legal experts predict the conservative bench will likely lean toward stare decisis (adhering to precedent) and uphold O'Connor's verdict. The case could eventually make its way to the Supreme Court, where another conservative majority would hold the future of PrEP availability in their hands.

Lifesaving medication
While PrEP is not covered by insurance in full and may encounter more limitations in the future, global studies have shown that access to medication is lifesaving. In 2021, international health authorities estimated that the annual new HIV infection rate decreased by over 70% in the Netherlands and by 44% in Australia, where HIV preventatives are affordable and easy to access. In the United States, the CDC estimated that the US decline over the same period was only 12%.

"Healthcare policy in the United States is multitiered, and it often clashes with consumer interests," Minh said. "The Affordable Care Act has expanded coverage to millions, but, like all laws, it possesses some loopholes too. Those 'gaps' can contribute to the current situation surrounding the insurance of injectable PrEP. Profit margins and bottom lines can greatly influence coverage decisions of insurance companies even when they compromise patient healthcare and affordability of lifesaving medicines."

The future may be uncertain, but one thing isn't — PrEP is a vital medication, and it saves LGBTQ+ lives. "This is an illness. It's a disease that has the power of eradicating Trans people and Gay people," Pitts said. "Maybe that's what they want, I don't know. It's a very personal thing for me. The motivation might be that they want this community to just disappear. We have to decide. We are at this moral turning point in our country where we're very much at risk of steps being taken to eradicate our communities. It's terrifying."