TEXAS — After decades of running smoothly as one of the state’s lesser-known success stories in the Dept. of State Health Services, the Texas HIV Medication Program hit a major snag in its operation to supply life-saving HIV drugs in December. 

In a memo addressed to the program’s advisory committee, the department announced that was ending an eligibility clause that could drop some 2,700 low-income and uninsured Texans living with HIV from the program.

Then, more bad news arrived during a quarterly meeting of the program’s advisory committee a few weeks later, in January. The program had a $52 million shortfall thanks, in large part, to the economic downturn during the pandemic, the state health department said. 

From there, the bad news snowballed into what now appears to be a full-on fiscal crisis for the government-funded program that had been heralded by many advocates working with people living with HIV as a critical answer to stopping the spread of the deadly virus that causes AIDS.

In March, the program’s advisory committee learned the alarming news that because of a “glitch” in the health department’s inventory software, the department had miscalculated the amount of HIV medication it had in stock by about $35 million.

Today, the Texas HIV Medication Program and the Dept. of State Health Services are facing not just a budget crunch, but a trust issue between it and its stakeholders and advisory committee.

At stake is the health of some 21,200 Texans living with HIV, who rely on the program to continue to receive the medications they need to stay alive.

“A lot of people are asking who is really minding the store here,” said Frank Rosas, a vice chair on the committee who has been a member of the 11-member board since 2009. Rosas, who has been living with HIV for 29 years, is also a patient in the program, relying on the medication it provides to keep him healthy. 

“The two big words they're asking for are accountability and transparency,” he said.

The medication program’s problems are two-fold, some of which can be blamed on the pandemic’s toll on the economy as well as the strain it put on the state health department’s organizational chart as it oversaw the state’s response to COVID-19.

The federal AIDS Drug Assistance Program, or ADAP, has funded the majority of the Texas HIV Medication Program since 1987, with an additional 25% of its total budget coming from the state budget every year. 

To be eligible for the program, applicants must be Texas residents who are HIV positive and living at 200% or below the poverty level and be uninsured or underinsured. To date, more than 21,247 Texans are enrolled in the program, which provides drug treatments for free.

The medications are life-saving for those who are living with HIV, as they help reduce the viral load in patients and prevent them from contracting AIDS, the often fatal acquired immunodeficiency syndrome. The medications render HIV undetectable in patients who take them regularly, meaning they can eliminate the risk of spreading the disease. 

Global health experts attribute the use of HIV treatment medications as an important component, along with prevention and education, to the dramatic decrease in infection rates in many parts of the world.   

But the drugs are expensive, and getting more expensive each year, which has contributed to the current financial struggles of the Texas program. 

The pandemic exacerbated the situation, as thousands of Texans living with HIV lost their jobs and, subsequently, their employer-sponsored health insurance. As a result, the program saw a 28% increase in enrollment between March 2020 and the end of the year, adding $34 million in needs. That was coupled with the higher cost of pharmaceuticals and fewer rebates being offered to state agencies to purchase the drugs, leading to a cumulative $52 million shortfall.

The program falls under the purview of the infectious diseases section of the state health department, the same section that has been tasked with the coronavirus response. The pandemic spurred a reshuffling in the Dept. of State Health Services, as the state grappled with handling much of the response to COVID-19, from tracking infections to testing, and now the vaccine rollout.

As of this week, the Dept. of State Health Services requested two supplemental budget items from the Texas Legislature, which is currently in session. 

The first request this month led to the recept of $52 million in emergency funding to reconcile the shortfall in the program’s 2021 budget. Part of that request came from $22 million from the Coranavirus Relief Fund and other federal funding, according to Chris Van Deusen, the director of media relations at the Texas Dept. of State Health Services. 

With that budget shortfall for 2021 covered, the department was able to cancel its original memo stating that it was eliminating an eligibility criteria as a cost-saving measure, meaning some 2,700 enrolled in the program would continue to receive their life-saving medication. 

But, an independent audit of the program revealed more needed funds to keep the program sustainable for the next two years, according to Januari Fox, the policy and advocacy director at PRISM Health of North Texas. 

People are understanding of the budget challenges to the program caused by the economic fallout of the pandemic, Fox said. The problem lies in how deep the problems were and how little the department was communicating about it, she said.

“I’ve never seen anything like this and I’ve been doing this for 10 years,” said Fox, who has worked with Texas lawmakers and the Dept. of State Health Services to advocate on issues related to HIV and AIDS.

For that, the department is asking the Legislature to approve $103.4 million to supplement its original biennial budget request for 2022 to 2023 fiscal years. 

“That’s what we are looking for...what happened to get us to this point,” Fox said. “There clearly was some pretty serious mismanagement.”

The situation is indeed confusing, and has suffered from a lack of clear communication, a fact that the Dept. of State Health Services is trying to remedy, said Chris Van Deusen, the director of media relations for the department.

The memo in late December that kicked off this current crisis surprised people, Van Deusen said. “Honestly, we could have done a better job communicating what that was and why that was happening.”

To keep the program sustainable with the increase in enrollment for the next two years, the state health department has submitted also a request to the Texas Legislature for $103.4 million in additional funds to stabilize the program. About $83 million goes directly to the HIV medication program, with the rest going to prevention programs.

The Texas Legislature, which meets every other year, has begun debate on the state’s biennial budget, which includes funding for the state health department. The House has approved a version that would fully fund the special request for the HIV medication program, while the Senate version included only $35 million. The final amount would need to be reconciled in the budget’s joint committees as part of the budget approval process.

Then there is the issue of the inventory “glitch,” which has many stakeholders in the program scratching their heads. 

Van Deusen said the glitch occurred when the software program that does the department’s inventory stopped deducting the number of doses sent out each month.  It wasn’t that $35 million in drugs went missing or lost, it’s just that the computer software wasn’t recording the deductions as it should have, Van  Deusen said. 

“It was really simply what was reflected in our internal inventory system,” he said. “There was medication there and it was being shipped out and people were receiving it,” he said. 

The department is working with their IT department to fix or replace the software, but the inventory glitch has been rectified and no one missed their medications because of the glitch, he said. 

Going forward, “we are working to make sure we are being more communicative and transparent with folks,” Van Deusen said.

While solutions to the crisis appear to be in play, there is still some skepticism, particularly among those on the program’s advisory committee. 

“It sounds great and positive, but it also feels kind of like it's just a band-aid,” Rosas said.

Those Texans who rely on the program want to see more than a band-aid solution for long-term sustainability, Rosas said.

“These are our lives they are talking about,” Rosa said. “We’re asking for them to break it down for us to explain what happened and what they are going to do going forward so we don’t see this again and again.”

With the worst of it perhaps behind them, Rosas said that there is a bright side to all of the turmoil. 

“All this is that it's put the spotlight on the department in the state,” Rosas said.

According to the Centers for Disease Control and Prevention, Texas HIV infection rates remain one of the highest in the United States at about 15.3% per 100,000 people. An estimated 100,000 people are living with HIV in Texas, with about 5,000 new infections every year. 

Texas and the southern states of the U.S. led the country in new HIV infections each year. In 2018, new HIV diagnoses in the southern states accounted for 51% of the total 38,000 new diagnoses that year, according to the CDC.

The more attention on the issue of preventing the spread of HIV infection and the issues facing Texans living with HIV the better, he said.