In 2003, a few weeks after Kamaria Laffrey, then 21 years old, gave birth to her first child, she received a phone call instructing her to immediately contact her doctor. The physician revealed that routine testing had found that Ms. Laffrey was H.I.V. positive. Fortunately, her baby was not.
If she’d received the same news a decade earlier, the diagnosis would have been a death sentence. But since the first combination of antiviral drugs was found to be effective in the mid-1990s, H.I.V. infection has become a chronic, manageable disease. Around one million Americans now live with the virus, taking drugs so powerful that they can make H.I.V. undetectable in the blood and prevent its spread to other people.
Ms. Laffrey, who is co-executive director of the Sero Project, an organization that fights the criminalization of people with H.I.V., said that until recently, she didn’t worry much about what it would be like to get AIDS. “I think about stigma more than I think about the physical health issue,” she said. But as a Florida resident, that sense of safety came into question this month. Some of her peers found themselves unexpectedly without coverage for the H.I.V. drugs that keep them alive.
On March 1, Florida cut off access to H.I.V. medications for some 10,000 to 16,000 residents whose prescriptions are paid for by a federal program called the AIDS Drug Assistance Program, or ADAP. Federal funding for the program has not kept pace with costs, so Gov. Ron DeSantis’s administration decided to make fewer people eligible, changing the cap on incomes qualifying for assistance from 400 percent of the poverty level (an income of around $64,000 for an individual) to 130 percent (an income of around $21,000).
The cuts also ended access to the specific medication that Ms. Laffrey takes. The once-daily drug, called Biktarvy, combines three different antivirals into one and is the most widely prescribed H.IV. medication in the United States.
Florida has the largest ADAP program in the United States and ranks third in the country for its number of H.I.V. cases. Thankfully, the State Legislature intervened and passed a bill to postpone the cuts until the end of the fiscal year in June, when they will be revisited amid budgetary reviews. But even if Governor DeSantis signs the legislation into law (as he’s expected to do), the fix is temporary and raises questions about future access to the drugs. (The bill does not restore coverage for Biktarvy.)
This man-made public health crisis goes far beyond a single state. ADAP also helps pay health insurance premiums under the Affordable Care Act for people with H.I.V. who otherwise could not afford coverage. However, the program’s funding has not increased, despite rising premiums after federal subsidies were not renewed by Congress. Consequently, around 20 states, including Rhode Island, Kansas and Delaware, have started or are considering reducing ADAP eligibility or access to certain medications. Pennsylvania, for example, plans to cut off some 1,600 people.
If action isn’t taken by state legislators, this could bring thousands of Americans back to the days when AIDS was a merciless killer.
These changes that states are considering are incomprehensibly cruel — and they won’t even save money. New H.I.V. cases will increase. Sick patients will eventually be admitted for care that is far more expensive than taking daily preventive medication.
When left untreated, H.I.V. infection is relentless. Because it destroys the immune system, the virus makes people vulnerable to all types of infections and cancers. They develop painful skin lesions, fungal throat infections and pneumonia. People can become blind; H.I.V. itself can infiltrate the brain, causing dementia.
In the worst-case scenario, these cuts could also generate treatment-resistant strains. That’s because even short interruptions of care can potentially allow the virus to mutate so that it is no longer susceptible to current medications.
In the 1980s and 1990s, hospitals were flooded with AIDS patients. But in 1996, when the first effective H.I.V. medication cocktails were introduced, everything changed. “It was like Lazarus rising from the dead,” said an infectious disease doctor, Judith Feinberg, describing the patients she treated at the University of Cincinnati. “You would start them on this medicine, and weeks later, they’d walk out of the hospital.”
Now, even a short-term pause in people’s access to H.I.V. drugs could be disastrous. The amount of virus in a person’s body can rise rapidly, resulting in health complications and making it possible for H.I.V. to be spread to others through sex or needle sharing for drug use.
Even before the changes to Florida law, Ms. Laffrey was above the income threshold for ADAP to pay for her medications directly, but she still worries about what would happen if she were to get sick or lose her job and the safety net were gone. She’s heard from people with H.I.V. and reliant on ADAP who were turned away at the pharmacy, told that their medicine now costs thousands of dollars that they don’t have. One of her friends, who is H.I.V. positive and in recovery from addiction, told her that he would almost certainly use drugs again if he had to stop taking his medication and face the potential of developing full-blown AIDS.
Dr. Gregg Gonsalves, an epidemiologist at Yale whose work with the AIDS activist group ACT UP in the 1990s helped spur the development and funding of H.I.V. drugs, tested positive for the virus shortly before the combination treatments became available. The early years of the epidemic were “horrific,” he says, describing how he and his friends went to funerals monthly, even weekly at some points. “Everybody was afraid for their lives, and then, all of a sudden, the drugs came online and then it was a battle to get people to pay for them,” meaning ADAPs.
That fight now needs to be renewed. It’s immoral to condemn people to die from a once-fatal infectious disease that medicine has made treatable. Not many problems can be solved by simply taking a daily pill. H.I.V. infection is now one of them, and we can’t afford to go back to the time when it wasn’t.
Maia Szalavitz (@maiasz) is a contributing Opinion writer and the author, most recently, of “Undoing Drugs: How Harm Reduction Is Changing the Future of Drugs and Addiction.”
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