After months of keeping participants in the dark, a Texas state-run program that covers the cost of lifesaving HIV medication for low-income, uninsured residents has announced that it has secured the funding necessary to continue its services.
More than 650,000 Texans have lost their jobs since the onset of the pandemic. With around 94,000 Texans living with HIV, many turned to the Texas HIV Treatment Program to access their medications. The program pays for lifesaving drugs for treatment of HIV and related complications for low-income and uninsured Texans—if they meet stringent requirements. Applicants must show they make less than 200 percent of the federal poverty level and are un- or under-insured, all of which must be reverified every six months.
Over the past year, the number of people enrolled in the program has swelled by about 30 percent, to more than 21,000 participants. In late December 2020, the program announced that it would drop nearly 3,000 of them. No notice was provided to clinics, providers or participants. For some, the change meant that when going to pick up their monthly refill, they were suddenly told they needed to pay for the medicine themselves.
“There wasn’t any communication … that there would be any changes,” Januari Fox, director of policy and advocacy at Prism Health North Texas, a health care provider for people living with HIV, told Filter. “The only way [patients would be notified] is when they went to pick up their prescriptions, they’d be told they’re no longer covered. Or if they recertify their paperwork, case workers would tell them. We would’ve had to shift quickly to make sure people stay on medication, and that’s not quick.”
Any gap in medication is a concern because of how crucial treatment is, with even short gaps leading to increasing viral load, weakened immune systems and other negative health impacts. Many providers are willing to cover the cost themselves if it means patients get treatment.
Although the program started ending coverage for some enrollees, it then stopped following outcry, and participants were re-enrolled.
“It goes back to transparency and accountability.”
Instead, in January, the program revealed a $52 million funding shortfall—due, it said, to the increase in people accessing the service and the increasingly high cost of HIV medication—that it would need to offset right away in order to continue operations. In March, as advocates were still fighting for the funding necessary to keep the program running, another issue became public: an earlier $35 million gap that was previously unknown due to a computer error.
“It goes back to transparency and accountability,” Frank Rosas, a program participant as well as vice chair of the advisory committee, said at a town hall meeting with program administrators that month. “We always used to get all kinds of budget and data reports that we would discuss at the meetings. Over the years, those reports were becoming less and less.”
Once the initial funding to cover 2021 had been secured, the program revealed another risk to operations: this time the need for over $100 million dollars to continue running for the coming two years, 2022-2023. $30 million was secured through the state budget, but a shortfall remained, creating concern and potential need for a wait list and other changes.
In late June 2021, the program finally announced that funding had been secured and that it could continue its operations. Many are confused about where the additional $70 million is coming from.
While announcing that no wait list would be needed, program director Rachel Sanor at the same time stated that changes could be coming—including potentially no longer covering the cost for medications that don’t directly treat HIV, but support related complications instead.
“We know that prevention is part of health care … We could be looking at a much larger health issue in the near future.”
For many providers and patients, the situation requires clarification.
“It’s a little confusing as to what happened and what changed,” Fox said. That confusion has the potential to be very damaging to the already-fragile trust between the HIV Treatment Program and its participants. Neither the program nor the Texas Department of Health and Human Services responded to Filter’s requests for comment.
The additional funding apparently secured should help the program not only remain in operation and at least maintain capacity. Currently, it struggles with archaic technology and limited staff, creating long application processing times and other issues.
Texas’s conservative government additionally refuses to expand Medicaid under the Affordable Care Act, which would allow people to receive HIV medication with the state getting partial reimbursement from the federal government. Medicaid requirements in Texas are extremely strict.
As a result, the state leads the country in the number of uninsured residents, with 4.8 million Texans under the age of 65 without health insurance—that’s 17 percent of the population, almost double the national average. In 2019, 4,302 Texans were diagnosed with HIV: the third highest total in the country. An estimated 16 percent of Texans are also living with HIV without having been diagnosed.
“Forty years of this and we’re still not getting ahead of things—especially in the South,” Fox said. “We know that prevention is part of health care … We could be looking at a much larger health issue in the near future.”