The first time Dallas resident Rafael Ruiz de Velasco heard about PrEP in 2017, it wasn’t from his doctor. It was from a dating app.
“Because people were saying ‘on PrEP’, and I was like, ‘What is this? What does that mean?’” Ruiz de Velasco said. “I thought I was just getting old and they're using some kind of new lingo.”
PrEP stands for pre-exposure prophylaxis, a medication that prevents about 99% of HIV infections. There are a few kinds of PrEP: Truvada and Descovy are once-a-day pills, and Apretude is a shot every few months.
The CDC recommends PrEP for people who are high-risk, like gay and bisexual men, men who have sex with other men, and people who inject drugs. But the CDC recommends everyone who’s sexually active have a conversation with their doctor about PrEP.
Ruiz de Velasco didn’t have health insurance but wanted to get on PrEP “to do something proactive.” But when he asked, his doctor had no idea the medication existed.
“I just assumed all medical professionals would know what this is,” Ruiz de Velasco said. “I don't understand how that's not part of their dialogue, especially when you have a gay male client.”
Doug Hardy, a physician with the HIV and sexually transmitted infections (STI) clinic Prism Health North Texas, said taking a pill a day to prevent HIV seemed unimaginable back in the 1990s.
“It used to be people take a handful of pills a few times a day,” Hardy said. “And it was so hard to take the medications. You had to take another handful of pills just to take care of all the side effects. So, it's really, really changed.”
Hardy said one way to think about PrEP is in the context of other kinds of prophylaxis, like travelers getting vaccinated against malaria, or birth control pills to prevent pregnancy.
“When someone gets exposed to HIV, either sexually or through IV drug use, then those medications already in their blood system will counteract the HIV infection, and prevent that person from becoming infected with HIV,” Hardy said. “The idea is to prevent that person from ever getting HIV in the first place.”
And in a state like Texas, which has the second-highest rate of new HIV infections in the country, prevention methods like PrEP are a key part of the federal response to ending the HIV epidemic. But not everyone who’s at risk can afford it or find a doctor to prescribe it. Stigma, health insurance, poverty and access all impact people’s ability to find HIV care in the state.
Doctor education as a barrier to HIV care
Primary care and family providers can be unequipped to have conversations about HIV, because routine STI testing often doesn’t include screening patients for HIV. Hardy said this is common among doctors who haven’t made this care “part of their practice.”
“A lot of people really don't want to, they’re not comfortable with it,” he said. “Maybe it's something that they're not comfortable talking to people about. Maybe they have different judgments about it, or some kind of stigma that they're thinking about. But it's not available everywhere.”
In one 2019 study from the Journal of HIV/AIDS & Social Work, researchers found other barriers to discussing PrEP: Doctors weren’t taking sexual histories; they assumed their patient wasn’t engaging in sexual behavior that might put them at risk for contracting HIV; their patient wasn’t comfortable discussing their sexual history; and, they were worried prescribing PrEP would mean a patient would stop using condoms and engaging in safe sex practices.
Jeffrey Campbell is the CEO of Allies in Hope, the first AIDS Service Organization in Texas. The Houston nonprofit helps people with HIV access health services, housing support, and prevention education. He said if doctors don’t know how to support their patients, it can stop people from getting tested or seeking treatment altogether.
“By the time a person comes in and asks you, they know they need it,” Campbell said. “Sometimes they're doing it just as a part of their sexual health screenings, but a lot of times there's a concern.”
But Campbell said he still hears from folks that their doctors will tell them to “go to an infectious disease specialist if you want a PrEP prescription.”
“If they get up the nerve to ask the question, and the doctor basically pooh-poohs that, it's already been a struggle to get there and to get those words out,” Campbell said. “They're like, ‘OK, I don't need it. I'm good because my doctor told me that I don't need it.’ Those words carry a lot of weight.”
How affordable is PrEP?
Affordability is another barrier to HIV prevention care. When Ruiz de Velasco’s doctor finally prescribed him Truvada, he didn’t realize how expensive it could be without insurance.
Gilead Sciences, the pharmaceutical company that makes Truvada, charges $2,000 or more for a month’s supply of the medication.
“The pharmacist told me how much it was going to be and he just looked at me like, ‘Are you sure you want this?’” Ruiz de Velasco said. “I didn't know it was going to be that much. I can’t afford that. So, we had to take it back, and it was disappointing.”
PrEP’s accessibility has been an issue since the U.S. Food and Drug Administration approved Truvada back in 2012. The U.S. House of Representatives held a committee hearing in 2019 investigating the rising cost of the drug.
Robert Grant, a professor with the University of California who led clinical trials of Truvada, testified that the drug can be “manufactured and distributed for $6 per person per month,” but has a 35,000% markup from Gilead.
Rochelle Walensky, a professor of medicine from Harvard University who also testified at the hearing, said the cost meant most people who received PrEP were “white gay men in the Northeast and the West Coast,” even though most new HIV infections are in the South among Black and Latinx men.
“The way that PrEP was initially rolled out, it wasn't covered by insurance,” Campbell said. “The people who got on it were rich, white gay men, because they could afford it.”
New data from the CDC shows there’s still disparities in PrEP usage. About 94% of white people who could benefit from PrEP were prescribed it in 2022, in comparison to 13% of Black people and 24% of Latinx people.
Jonathan Mermin, the director of the National Center for HIV, Viral Hepatitis, STD and TB Prevention at the CDC, said while PrEP usage has been increasing, “the encouraging results also highlight the gaps.”
“Bringing information about PrEP, and ensuring that there's appropriate resources, and that we all have the access that we need, continues to be an issue,” he said.
A 2020 study from the CDC’s HIV/AIDS Prevention Division estimated that HIV care could cost between $420,000 to a little over $1 million for someone’s entire life. But under the Affordable Care Act (ACA), “almost all public and private insurers should cover PrEP with no copay,” which means that “money shouldn’t be a barrier.”
A Texas lawsuit challenged that provision in 2022. A Christian for-profit company argued it shouldn’t have to cover PrEP for employees under the ACA, because it would “facilitate and encourage homosexual behavior.”
Anyone can contract HIV, regardless of sexual orientation, and in 2020, heterosexual sexual contact was the second-highest transmission category for new HIV diagnoses.
A Texas judge ruled that this coverage violated the company’s religious freedom, but the federal government challenged the lawsuit in May 2023. The lawsuit is on hold for now.
There are programs that help people without insurance afford PrEP, like the federal Ready, Set, PrEP program, along with community health centers that offer services on a sliding scale.
Five counties in Texas—Dallas, Tarrant, Harris, Travis and Bexar— are also part of the national Ending the HIV Epidemic initiative, which focuses on places in the United States “hardest hit by HIV.” Those counties receive additional government funding to improve access, education, prevention and treatment for HIV.
Prism Health North Texas also launched a free at-home condom and HIV test kit delivery program in October for people anywhere in Texas.
HIV funding
After understanding the out-of-pocket cost for one month of PrEP, Ruiz de Velasco thought he just wouldn’t be able to access it without insurance. A friend told him about Prism Health, which at the time had a program to help people pay for PrEP and the lab work needed every few months.
When he got to the clinic, he spoke to a doctor who answered all his questions and “did a thorough examination” that “covered all the bases.” He was even tested and got treatment for an STI he didn’t know he had.
“Without having insurance, I wouldn't ask a doctor to screen me for everything under the sun, but Prism, they did,” Ruiz de Velasco said. “And as a result, I was able to get well again.”
Doug Hardy with Prism Health said the organization sees patients with and without insurance, but the funding for their work can fluctuate every year.
“Something that's funded by the county, the state, federally, the CDC, the National Institutes of Health, may be funded one year or may not be funded the next year,” he said. “That makes it a little bit challenging to always provide the same care at all times.”
One of the funding sources clinics used to rely on was Gilead, the maker of Truvada, which provided reimbursements that often paid for services for low-income or uninsured patients. But that program stopped in 2022, which meant clinics across the United States had to cut back on services and lay off staff.
That’s what happened at Prism Health. The organization cut community STI testing and education about HIV treatments due to funding issues. The organization also laid off about 15% of its employees earlier this year.
“It makes a difference to the person that’s actually being attended to,” Ruiz de Velasco said. “Cutting short on staff, people that have become your rock after a while and then are no longer there…it’s just like, woah, what happened?”
The other funding issue in Texas is the large uninsured population. Almost 17% of Texans are uninsured, according to the latest census data, and like Ruiz de Velasco, many people can’t afford to pay for doctor’s visits or prescriptions out of pocket.
“There's things you have to sacrifice,” he said. “Unfortunately, your health is one of them, when the cost is high.”
Medicaid expansion and HIV in Texas
One reason for Texas’ high uninsured population is because it’s one of 10 states that has yet to expand Medicaid. Nationally a little over 40% of people with HIV are on Medicaid, which covers HIV treatment, care and testing.
It’s the “largest source of insurance coverage for non-elderly adults with HIV,” according to the Kaiser Family Foundation. The federal government spent about $13 billion on Medicaid services for people with HIV in 2022. But in Texas, many of those people don’t qualify because of the state’s strict income requirements.
“If I can't, as a patient, afford [PrEP], I just can't afford it,” Jeffrey Campbell with Allies in Hope said. “And we're talking about every month. Some of this continues to happen…where there's lack of Medicaid expansion.”
Guillermo Chacón, the president of the Latino Commission on AIDS, said “lack of access to health care is still a fundamental issue” with trying to end the HIV epidemic in the United States.
“I can tell you that people will be in a better place if they have access to health care and get the benefit of the coverage,” Chacón said.
Since Medicaid makes up almost half of federal HIV spending in the United States, but since Texas hasn’t expanded the program, that means clinics like Prism are unable to access millions of dollars of funding.
That bothers Ruiz de Velasco. He’s helped friends and family get tested for HIV and educated others from what he learned at the clinic.
“I don't understand the delay with wanting to fund a program [that] prevents any kind of disease from wreaking havoc upon your life,” he said. “I just wish there was more funding for the people that are trying to make a good difference in someone's life.”
In the meantime, Ruiz de Velasco is doing what he can to take care of his sexual health. PrEP is just another part of his “nightly routine.”
“It's right there next to my toothpaste,” he said. “I brush my teeth, I take my pill, and then I go to bed. I can sleep at night easy, knowing that my body's being taken care of.”
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