Six years after the therapy's approval, Arkansas lags behind many other Southern states in adopting a drug regimen that can protect people from contracting HIV, recent findings from data-mapping group AIDSVu reveal.
The shortfall has been noted by providers and health advocates in the state, who say high costs, inadequate education programs and lingering stigma have limited the number of people on pre-exposure prophylaxis treatment, known as PrEP.
According to information compiled by AIDSVu, which is run through Emory University's Rollins School of Public Health in Atlanta, the school's Center for AIDS Research and drug manufacturer Gilead Sciences, Arkansas is tied for ninth of 14 Southern states in its rates of usage of prophylaxis treatment. For every 100,000 people in the state, 16 were using the treatment in 2017, the findings said.
That rate barely tops the South's lowest rate of usage, where 14 of every 100,000 people in South Carolina use the treatment. The highest rate is in Florida, which has 42 users per 100,000 people.
What's going on in the region matters, AIDSVu principal scientist and epidemiology professor Dr. Patrick Sullivan said in an online presentation about the data, because it's a major hot spot in U.S. HIV and AIDS rates. Over half the country's new HIV cases were in the South in 2016, though just 30 percent of users of prophylaxis treatment live there.
"We always want to ask how things are going in the South ... where we know that the epidemic is very intense," Sullivan said.
Although he said overall use of preventive treatment has grown by 1,000 percent and current numbers are likely an undercount (partly because of a lack of data sharing in some health systems), Sullivan points to a cluster of Southern states -- including Arkansas, Alabama and Mississippi -- that continues to show lower treatment use, often correlating with high poverty rates.
"That nexus of poverty and PrEP uptake has implications" for policymakers, he added.
Arkansas' rate of prophylaxis usage is 33 percent lower than Tennessee's, which had the same rate of new HIV diagnoses as the Natural State in 2016 (the most recent year for which data are available). Local use of prophylaxis treatment also is growing more slowly than in four of the six contiguous states, with Louisiana and Texas' rate nearly doubling Arkansas' within the same six-year period.
At health clinic network ARcare, statewide outreach and prevention coordinator Danny Harris said he's been hearing more Arkansans ask questions about preventive treatment. But he also hears about doctors who don't want to prescribe it, and from people who are curious about the medication but don't ultimately follow through with treatment.
"In Arkansas, I can't verify that I'm seeing more [usage] ... I still think that our numbers are very low in using PrEP," he said. "To me, mostly, it's kind of frustrating."
The Planned Parenthood clinic in Fayetteville has seen a "slow increase" in its number of patients using the treatment, but there are meaningful obstacles to more widespread adoption, family physician Dr. Stephanie Ho said.
Chief among these is the medication's high cost, which can run about $2,000 a month out of pocket, she said. While some insurers and prescription access programs will pay for it, the upfront cost can be prohibitive in a state where many are poor and disposable income is in short supply.
"I don't have $2,000 in my pocket that I can just hand somebody right now. I really don't know a lot of people who do," Ho said.
The treatment also carries costs beyond the price of the medication, including transportation to and from recurring appointments for medication management -- it's not like prescriptions that just have to be refilled annually, Ho said -- and the accompanying lab tests.
"[It's] the labs that come with it that's the problem," said Harris. People worry about the costs, and "they never will make that appointment."
Adding to affordability problems, few programs in the state effectively disseminate details about the therapy, said Cornelius Mabin Jr., founder and CEO of health advocacy group Arkansas RAPPS. He says there haven't been many coordinated, "homegrown" education initiatives, and doctors working in rural areas don't always have information to offer patients about the treatment's usage.
There also have been reports of doctors in the state, Harris said, who are reluctant to prescribe the treatment, contending that it promotes promiscuity. He said that attitudes like this don't engender goodwill among patients, who may already be hesitant to talk about their personal lives in doctors offices.
"If any discussion of sexuality is [labeled] 'promiscuity' ... it makes it uncomfortable to be there. Immediately, there's a judgment attitude someone has," he said.
Discussions of prophylaxis treatment are complicated by the fact that people at higher risk of contracting HIV are often members of groups that are marginalized for other reasons, Ho said: gay and bisexual men, black women, people who are transgender. Doubts about self-identifying as gay or trangsgender, for example, may shut down discussions between patients who might benefit from the treatment and their doctors.
"Because of some of the stigma that's associated with sexual orientation or gender identity, and the risk that patients feel that they are putting themselves in by declaring that, is sometimes the barrier ... with Arkansas being really conservative," Ho said.
"It just kind of makes it harder and harder ... to offer treatment to patients, if they're scared to even come to the clinic."
A SLOW START
Only one type of pill, sold under the brand name Truvada, currently is approved for the prophylaxis therapy, though others (at both manufacturer Gilead Sciences and other drug companies) are in development. Taken consistently, it's thought to reduce the risk of contracting HIV by as much as 92 percent, according to the Centers for Disease Control and Prevention.
Truvada combines two medications, emtricitabine and tenofovir disoproxil fumarate. It was developed to treat HIV, but trials revealed a decline in new infections in those who were given the drug combination, suggesting its use in prevention, said Gilead's vice president of HIV medical affairs, David Piontkowsky.
At the time of its Food and Drug Administration approval of that usage in 2012, Piontkowsky said the company was aware of stigma around the treatment -- he compares it to early discussions of the birth-control pill -- even in communities most affected by HIV, such as gay men.
It's part of what's led to a relatively slow start for the treatment in some places. He said the number of people using the therapy is "nowhere near" the number the CDC currently recommends.
"It's taken a long time for PrEP to catch on," agrees Greg Millett, vice president and director of public policy for The Foundation for AIDS Research. "We're still at this period where this innovation, as incredible as it is, just hasn't disseminated widely to people who need it."
Millett describes overall barriers to adoption of the treatment as being much the same as those in Arkansas, including doctors who believe it encourages unsafe sex. Inconsistent insurance coverage also has played a role, though he says that could start to change after a recent recommendation from the U.S. Preventative Services Task Force.
Despite what he calls "HIV fatigue" after years of related headlines, Milllett said it's important for people working in public health to keep talking about preventive treatment, which has had ancillary benefits such as opening up dating among people who have HIV and those who don't -- relevant in the gay community, where he says as many as 1 in 5 men is HIV positive.
But he concurs there have been speed bumps in messaging about the treatment, especially within some groups. For example, he said black women, who the CDC marks as making up more than 60 percent of new women's HIV diagnoses in 2016, sometimes share a mix of anger and skepticism when learning about prophylaxis treatment.
"They wonder, well, how come I didn't hear about this? How come no one told me about it, or shouted it from the rooftops?" he said. "There's still a lot of hiccup in the rollout, where populations who need it are not necessarily getting it."
SPREADING THE WORD
"It's going to be a matter of getting the information out there," said Ho, when asked how she thinks use of the treatment can become more common in the state.
Mostly, Ho said, expanding use in Arkansas is a matter of access -- of finding ways to get prospective patients into the clinic, figuring out how they can pay for the medicine, and making sure they are able to keep follow-up appointments.
"Until we can kind of overcome all of those, we will have issues making this as widespread as it needs to be," she said.
Another key piece is education and outreach, she said. Recently, providers at the Fayetteville clinic, where the treatment has been available since at least 2017, are asking patients about it first, rather than waiting for visitors to bring it up. "We don't necesssarily wait for patients to say 'Hey, I would like to talk about PrEP,'" Ho said.
At the Arkansas Department of Health, infectious-disease branch chief Tiffany Vance said representatives regularly attend national and CDC trainings to learn more about the treatment so they can provide information to the community-based organizations the department partners with on HIV-prevention efforts.
Prophylaxisis treatment not prescribed through the state Health Department's county units (there isn't grant funding for it, Vance said). However, she said there have been department-sponsored HIV-prevention events at colleges, including Philander Smith College, Henderson State University, the University of Arkansas at Pine Bluff and the University of Central Arkansas.
Arkansans also can visit www.preplocator.org, which lists eight clinics in the state that prescribe the treatment.
Mabin has looked toward initiating and expanding workshops on the treatment, saying education, awareness, resources and money would all improve adoption rates. He invited a scientist to Little Rock to answer questions about the therapy, and recently he heard that Los Angeles' Black AIDS Institute had some graduates from Arkansas who are interested in doing work on the treatment in the state.
In addition to education programs, Harris said he'd like to see more of a model he's familiar with from other states. In some places that have clinics that only provide the treatment, people can visit and go home with Truvada the same day, he said.
But that kind of streamlined access, he said, is still a ways away throughout Arkansas, where more than 6,000 people are living with HIV or AIDS.
"There are a few tools that we have for HIV prevention, and PrEP is one of those that could help us," he said. "We're not there yet."
A Section on 12/23/2018