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In July the Biden administration directed insurance companies to cover all costs related to landmark HIV prevention drugs, a move many lauded as an important step to ending the HIV epidemic in the nation. But those already living with the virus have for years said the drugs are exorbitantly expensive and that insurance companies have an outsized hold on their medical and financial well-being. Now, they might be left out of the financial relief the directive provides. 

Kyle Lucas was diagnosed with HIV in December 2018, he tells the Reader, at a branch of local health center Howard Brown. Since then, he says he has been taking Biktarvy, a drug made by California-based pharmaceutical giant Gilead Sciences, which makes other HIV treatment and prevention drugs. Like many people living with HIV, Lucas uses both his insurance and a co-pay card to afford his medication.

But with his job changing insurance providers, he worries how much his medication will cost under the new plan. Without insurance and that co-pay card, he says his current insurer Aetna charges more than $4,100 a month for the drugs. 

Matt Brim, a professor of queer studies at the College of Staten Island, City University of New York, wrote about his own experiences contending with labyrinthian insurance and bureaucratic red tape when seeking coverage for his own HIV treatment drugs. 

In his book Poor Queer Studies: Confronting Elitism in the University, Brim describes joining clinical trials for free pills, getting rejected for financial assistance from Gilead, and being harangued by university officials for using a welfare fund to afford his drugs, thus forcing him to find other avenues to afford the drugs. 

In an interview with the Reader, Brim says that even as a privileged white man with insurance and public university employment, he still faces hurdles in accessing quality care. “I’m somebody who looks like he would be able to have access to affordable drugs, and that’s just not the case,” Brim says. “And so then you say, ‘Well, if it’s not the case with me, who else is that not the case for?’”

Even when insurance pays for most of the cost of the drugs, and a co-pay card covers the rest, human error can impede access to important treatment. As Lucas details, when he was first diagnosed, pharmacists improperly charged the entire cost of the drugs to his co-pay card instead of his insurance, nearly depleting the card’s total balance for the year after just a few refills. Though the issue was eventually resolved through another pharmacy, Lucas says this is a perfect example of how people living with HIV can be helpless in the face of complicated insurance schemes that even medical professionals have trouble navigating. 

“It’s just really crazy that I’m just beholden to the benevolence of a fairly evil drug company,” Lucas says. “So I’m subjected to their benevolence to survive, essentially.” 

The HIV epidemic in the U.S. now most seriously impacts poor people of color. Black men who have sex with men are most at risk of contracting HIV, the CDC states, and with drugs costing thousands of dollars a month, those most able to navigate the financial and bureauctic hurdles associated with treatment are most likely going to be wealthy white people, a phenomenon that research overwhelmingly shows is endemic to our health care system.

Rae Lewis-Thornton made history when she graced the cover of Essence magazine’s December 1994 issue, opening up about living with HIV. She tells the Reader she was diagnosed in 1987, early on in the crisis, and recalls times where no one would insure her. That was remedied in part by an Obama administration reform that barred insurers from using pre-existing conditions as a reason to deny coverage. She details this more specifically in a forthcoming memoir, Unprotected: A Memoir.

More than 30 years after she was first diagnosed, Lewis-Thornton says getting medicine is still difficult. “If you have HIV, depending on where you are socio-economically, there’s just like a lot you have to do to get the medicine,” she says. “Of course, you do it because you need the medicine, but you can easily fall through the cracks.”

Difficulty accessing treatment doesn’t just mean a delayed prescription, expensive medicine, or long phone calls with insurance companies. In 2018, journalist Mark S. King wrote about the thousands of people in the U.S. still dying of HIV/AIDS-related complications, whom he says are a victim of the hurdles impeding access to treatment. The subject central to his writing, his friend Antron-Reshaud Olukayode, lived with HIV and fell out of treatment simply because he had trouble getting to appointments without a car.

The CDC reports that more than 5,000 people died of HIV-related causes in 2019 in the U.S. “[Those deaths are] people who were exhausted by this very problem, of how to stay in care, how to continue their medications, because AIDS is a disease of the poor, and the marginalized,” King says. “And you have people without resources that we are asking to go through this very complicated, sophisticated, bureaucratic puzzle, and they’re not equipped to do it.” King, who has HIV himself, calls living with HIV a full-time job.

Claims that HIV treatment drugs are wildly too expensive aren’t exactly new, and have earned the attention of the federal government and lawmakers alike. For its role in all this, Gilead Sciences—the company that makes Biktarvy and the blockbuster HIV prevention drug Truvada—is facing a massive class action suit in federal court alleging the pharmaceutical giant broke federal antitrust law by conspiring to block generics of the antiretroviral drugs.  

Truvada, and HIV prevention drugs like it, are commonly known as pre-exposure prophylaxis, or PrEP. According to February 2019 securities filings from Gilead, Truvada boasted nearly $3 billion in sales in 2018, a fraction of the roughly $14.6 billion in total sales reaped from the drugmaker’s HIV-related products that year. The CDC states that the only two drugs approved for use as PrEP are Truvada and Descovy, both made by Gilead.

The federal government also sued Gilead in November 2019, alleging the government owns the patent to Truvada and Descovy. In light of those allegations, Gilead investors also sued the company in February 2020 seeking records about Truvada. After the pharmaceutical company refused to turn over anything to the investors, a Delaware state court judge ruled the company had to pay them $1.8 million in legal costs and fees. U.S. Representative Alexandria Ocasio-Cortez also took the drugmaker’s chief executive Daniel O’Day to task at a hearing in May 2019, highlighting significant price disparities between what Gilead charges for Truvada in the U.S. versus what it charges abroad. 

“The list price is almost $2,000 in the United States,” said Ocasio-Cortez. “Why is it $8 in Australia?” She added, “There’s no reason this should be $2,000 a month. People are dying because of it, and there’s no enforceable reason for it.”

In an effort to make some drugs more accessible, the Department of Health and Human Services, along with the Department of Labor and the Department of the Treasury, said in a July 2021 rule change that insurers must cover the drug, including doctor’s visits and quarterly lab costs associated with the drug regimens. 

And while the PrEP directive was indeed novel, the omission of drugs to treat HIV is a glaring one. It’s also left many people living with HIV feeling sidelined in the fight to end the epidemic, despite overwhelming evidence that access to medication prevents people living with HIV from spreading the virus. 

Campaigns around the globe have homed in on the scientific fact that people living with HIV whose viral load—the amount of the HIV virus in the blood—is undetectable pose no risk of transmitting the virus. Activists, public health experts, and people living with HIV say that getting those living with the virus the medicine they need to achieve undetectable status is just as important as making PrEP widely available.

For those unable to afford the drugs without insurance, the government provides some options. Notably, the AIDS Drug Assistance Program, under the federal Ryan White HIV/AIDS program, is a state-level system that provides FDA-approved medication to people who are low income who have little to no insurance under Medicare, Medicaid, or private coverage. 

And ADAP isn’t without its own problems, says Jim Pickett, senior director of prevention advocacy and gay men’s health at AIDS Foundation Chicago. As a federal program administered by the states, ADAP suffers under fragmented coverage across the country. “The AIDS Drug Assistance Program is really an incredibly important backbone of medication access for people living with HIV in the country, but where you live depends on how well those programs are going to work for you,” Pickett says. 

But as Pickett and other experts like him overwhelmingly say, universal health care would significantly improve access to treatment and would be a crucial step toward ending the HIV epidemic.

“We need a different health care system that doesn’t predispose people to better or worse care, depending on where they live,” Pickett says. “If you’re HIV-positive and you live in Los Angeles, or Milwaukee, Wisconsin, or Baton Rouge, or New York City, or somewhere in South Carolina, you should be able to get the same level of care. You shouldn’t be dinged because you live somewhere that doesn’t value health care.”

Adam M. Rhodes

Adam M. Rhodes is a queer, nonbinary, first-generation Cuban American journalist. Rhodes is currently a social justice reporter at the Chicago Reader, where their work centers primarily on queer people and people of color. Their recent work has examined HIV treatment access in Puerto Rico, racism in Chicago’s principal queer neighborhood, and, most recently, HIV criminalization in Illinois. Alongside the Reader, Rhodes has been published in outlets including BuzzFeed News and The Washington Post. You can follow them on Twitter at @byadamrhodes.