PrEP has revolutionized the war on HIV — but barriers to access remain
[This story, which we feature today on World AIDS Day, is part of ongoing work on LGBTQ+ healthcare in North Carolina, written by Joe Killian. It was conceived and written through a partnership between NC Newsline and Qnotes Carolinas.]
As a 40-year-old gay man, Trevor Hoppe still remembers a time when sex was inextricably linked to the danger of HIV infection — and HIV was considered a death sentence. As a sociologist, he’s fascinated by how Preexposure prophylaxis (PrEP) has changed the world just in his lifetime — especially for LGBTQ people.
“I sort of sometimes joke it’s like birth control for gay men,” said Hoppe, who lives in Charlotte and teaches at UNC-Greensboro. “It’s separated the link between this outcome of HIV and sex. So it’s broken that connection for a lot of people and created a sense of relief and freedom and possibility of exploration sexually that did not exist before. And at least hadn’t existed since the early ’80s, before HIV came around.”
Hoppe got on PrEP almost as soon as it was commercially available.
“It changed my life,” he said. “I think it changes a lot of people’s lives. I used to freak out every time I got sick thinking I had HIV, really for my entire life up to that point. And now I don’t. I don’t even consider the possibility of getting it. It’s just not part of my life concerns.”
The Federal Drug Administration approved Truvada, the first commercially available PrEP pill, in 2012. Two years later, the Centers for Disease Control and Prevention (CDC) approved guidelines that recommended its use by high-risk groups, especially men and transgender people who have sex with men.
With daily use, Truvada is more than 99% effective. Its appeal was strong and adoption swift, especially in major cities. The CDC tracked PrEP usage among gay and bisexual men and found usage skyrocketed from just 6% in 2014 to 35% in just three years.
But not everyone was benefiting. Without insurance, a 30-day supply of PrEP could cost $2,000. Even insurance plans that covered the medication often required cost-sharing, co-pays or required patients to be responsible for the lab testing to access or stay on the drug.
The upshot: Far fewer lower-income people, particularly Black and Latino people, were able to get the drug.
That began to change in 2019, when the U.S. Preventive Services Task Force (USPSTF) issued a recommendation that would require nearly all private health care plans to cover PrEP without cost sharing no later than 2021, effectively making it free.
That same year, the FDA approved a second PrEP drug, Descovy. It was found to be as effective but with fewer effects on bone density and kidney function. Later that year, the FDA approved Apretude, the first injectable PrEP drug, which can be taken just once every two months. Later, doxycycline post-exposure prophylaxis (Doxy-Pep) would show great promise in dramatically reducing gonorrhea, chlamydia and syphilis infections in the same manner.
It seemed a real revolution was under way.
“I would joke that we should put it in the water,” Hoppe said. “Because every sexually active person, certainly every gay man and transgender woman and transgender man who is having sex with men should definitely be on PrEP. To me there’s no real question, because it’s so effective and the side effects are so low.”
But more than a decade after the first PrEP drug was approved, there are still barriers to and disparities in access. Low-income people and racial and ethnic minorities are still less likely to take the drugs, even as programs meant to expand access have proliferated. And conservative lawmakers are targeting funding for some of the most effective HIV prevention programs — including those that could make true universal access to PrEP a reality.
Kody Kinsley, North Carolina’s Secretary of Health and Human Services, calls PrEP a phenomenal tool that unfortunately still faces barriers to access including geography, affordability, politics and, unfortunately, stigma.
“Like every other virus it often preys on the vulnerable,” Kinsley told Newsline. “It preys on the people who are in rural communities, who don’t have access to health care, who are marginalized, and so bringing them into the fold of health care, bringing them to the fold of testing and support is step one, in trying to combat HIV.”
Medicaid expansion, scheduled to go into effect Dec. 1 in North Carolina, “could help broaden access to folks to cover these therapeutics and preventative treatments, so that people can get access to them,” Kinsley said. “And really, it starts with someone just having a conversation with their health care provider, and not having any shame about it. Figure out how to get that pill every day. It’ll be the simplest thing you do to support your health and well being and let you live a full and happy life.”
Challenges to access and political pushback
Carl Schmid has been advocating for the HIV community for more than 25 years. As the executive director of HIV+Hepatitis Policy Institute, he sees PrEP as one of the greatest innovations in the decades-long fight against the spread of HIV/AIDS.
“It’s been an amazing game changer,” Schmid said. “And we’re still seeing new things, improvements. I say we’re really still at the beginning of PrEP. At the same time, we have a long way to go to getting access for everyone who needs it.”
The CDC estimates 1.2 million Americans fit the characteristic profile of people who should be taking PrEP, Schmid said. To date, only about 36% of those people are using the medication.
“And there are huge disparities,” Schmid said. About 94% of the white people who should be on PrEP are getting it, compared with 24% of Latinos and 13% of Black or African American. “Now, that’s not to say it’s bad that all those white people are on it, because it’s good. But we are right now just failing to reach all the populations. We really have to do a better job in those communities.”
One of the problems is that providers and insurance companies, either through ignorance or belligerence, are still not making the medication as available without cost-sharing, as it should be under the law.
“That’s been one of the barriers, that people are still being charged — around 30 odd percent, according to new stats on that,” Schmid said. “And PrEP is not just the drug. It’s the labs, it’s doctor’s visits. And we’ve been having huge problems there.”
As an advocate, Schmid said he and his organization receive many calls from people having problems with their provider or insurance company charging them — especially for labs and doctor’s visits that should be covered. Those calls are almost always from white gay men, he said.
“I rarely get calls from Latino and Black gay guys who are experiencing problems,” Schmid said. “Some don’t know that they can fight that. Some aren’t willing to.”
Decades of studies have shown LGBTQ people have more negative interactions with medical providers, which contributes to greater health disparities. It’s an even greater problem among transgender people, who reported far more negative interactions with medical providers even before a recent wave of anti-transgender laws impacting their health care.
Factor in the long negative history of Black and Latino people’s experience with medical care in America, and it’s not difficult to see why those populations aren’t adopting a game-changing drug requiring extra doctor’s visits and labs at the same rate.
“We do get stories of people who just give up,” Schmid said. “They have a co-pay of $20, or they get billed hundreds of dollars for their labs. We’ve had to work with people to get their money back, to work with state insurance commissioners. It’s supposed to be for free, but we’re still having lots of issues. And those are the people who are insured.”
About 55% of people eligible for PrEP have private insurance, Schmid said — and then there’s the Medicaid and Medicare populations, and those who are uninsured. Each type of coverage can be difficult to navigate and there are still varying levels of compliance with eliminating co-pays and cost sharing.
But there are programs, including some in North Carolina, working to reach those who are having the most trouble with access.
“There is a new program through the federal government for PrEP, through the community health centers, and this was actually started as part of the [Ending the HIV in the U.S.] Initiative, and it’s for low-income people,” Schmid said.
The federal government has started a new program for PrEP using community health centers known as the Ending HIV in the U.S. Initiative, and it’s aimed at low-income people, Schmid said.
Three community health centers in North Carolina are part of that effort, Schmid said — CW Williams Community Health Center in Charlotte, Charlotte Community Health Clinic, and Gaston Family Health Services in Gastonia.
In total, 654 people are getting PrEP that way, Schmid said.
Chelsea Gulden, president and CEO of RAIN, has been helping to advocate for people living with HIV since her own diagnosis 20 years ago. As a social worker, she saw a lot of early confusion over and trouble with accessing PrEP in its early days. The situation has improved, she said, especially in larger metro areas. But in more suburban and rural areas, there is still a lot of work to do.
“The people that really need PrEp, the most vulnerable populations – people of color, people with trans experience, people living in poverty, people with limited access to health care, no health insurance, not eligible for Medicaid. They were still unable to access PrEP,” Gulden said.
“In Mecklenburg County, I think we are fortunate,” Gulden said. “Because the county has stepped up and provided a program with certain medical clinics, where somebody who is uninsured and within a certain income bracket and living in Mecklenburg County can access PrEP. And so now they have access not only to PrEP, but to a primary care or PrEP-prescribing physician quarterly.”
In the South, the need to close that disparity gap is particularly acute.
The South has 52% of the undiagnosed infections in the U.S., according to data from the Southern AIDS Coalition. Forty-four percent of all people living with HIV were diagnosed in the South.
Nationally, about 85,000 people are getting PrEP through community health centers, Schmid said.
“Unfortunately, the Republicans in the Congress on the House side have zeroed out that program,” Schmid said. “The Senate has that funding for it, it’s $147 million. But they zeroed out all the Ending the HIV Epidemic funding that impacts North Carolina and 57 jurisdictions. The Senate is actually keeping that money, but, you know, we are facing the possibility of it going away.”
Earlier this month, health care advocates helped defeat an amendment to eliminate the Minority AIDS Initiative, by a vote 109 to 324.
“And so that shows even with Republicans the majority, a majority of the Congress does not support these cuts,” Schmid said. “But that’s what we’re facing right now.”
Fighting stigma, holding ground
Many people draw parallels between the advent of birth control and PrEP, Gulden said. That’s not only because both were revolutionary, society-changing medical innovations. It’s also because each faced —and still face — social stigma and conservative resistance.
“I think medical mistrust still plays a significant role in lack of access, in lack of PrEP-providing doctors — because we’re still seeing some of those stigmatizing comments, and doctors that are refusing to prescribe PrEP,” Gulden said. “As we’re seeing policies swing the other way now, where doctors can decline to prescribe birth control due to personal reasons or personal beliefs, I think we’re going to see a similar swing around preventative measures like PrEP.”
Having emerged from the dark early days of the HIV/AIDS epidemic, many advocates say it’s difficult to understand why lawmakers would oppose funding for a life-saving drug.
“There are a lot of survivors who marveled at the existence of PrEP, and obviously wish that it was around before,” said Christina Adeleke, senior policy manager for community mobilization and health equity with AIDS United. “But we have this amazing tool now, which in conjunction with the existing HIV treatment that is available for folks living with HIV, we really have a lot of the tools that we need to actually end the HIV epidemic.
“Yet, if we regress and don’t continue to adequately fund and resource these programs that allow us to continue this progress, we’re going to go back,” Adeleke went on. “Currently we are experiencing appropriation season in Congress, and a lot of HIV programs are proposed to be cut. And that’s in absolutely no way helpful towards ending the HIV epidemic.”