ATLANTA — Latonia Wilkins is aware of she must be on PrEP because of her non-monogamous way of life. But the 52-year-old Atlanta mom has confronted repeated challenges getting the lifesaving drug that may stop new HIV infections.
Years in the past, Wilkins was relationship a person newly identified with HIV and went to get examined, she mentioned, however was not supplied PrEP.
Since then, Wilkins mentioned, docs both have advised her she doesn’t want the drug or have been reluctant to prescribe it. Her insurance coverage by means of work wouldn’t cowl a long-acting injectable type that tends to have higher outcomes than the unique capsule type. Getting to appointments throughout Atlanta for the drugs was a problem. She is now enrolled in a drug trial for a promising PrEP injection however worries about future entry and price.
Preexposure prophylaxis, often known as PrEP, reduces the chance of recent HIV infections by means of intercourse by 99% and amongst injectable drug customers by at least 74%, in accordance with the Centers for Disease Control and Prevention.
Among states, Georgia has the highest rate of recent HIV infections, however residents — particularly ladies and Black sufferers like Wilkins — are sometimes not getting PrEP, information exhibits.
A rule enacted by the Biden administration that took impact for a lot of Affordable Care Act plans on Jan. 1 ought to make it simpler for individuals like Wilkins to get long-acting PrEP injectable medication.
A brand new Trump administration provides an X issue to this and different federal well being applications. On Jan. 27, the White House introduced a federal funding freeze, which despatched shudders by means of well being companies and nonprofits. By Jan. 29, it had reversed the order.
Federal initiatives just like the Ryan White HIV/AIDS Program and HIV prevention funding appeared to be affected — and “blocking access to PrEP would have deadly consequences,” mentioned Wayne Turner, a senior lawyer on the National Health Law Program.
Georgia has large racial and gender discrepancies in PrEP uptake, mentioned Patrick Sullivan, who’s an epidemiology professor at Emory University and leads AIDSVu and PrEPVu, which observe HIV information and entry to the drug — work that’s backed by Gilead Sciences, a PrEP drug producer.
Public well being consultants use what’s known as a “PrEP-to-need ratio” to measure how many individuals prone to HIV are getting the drug. A better quantity is healthier. In Georgia for 2023, the statewide ratio was 6, whereas it was practically 167 in Vermont, according to PrEPVu.
While the ratio for white individuals in Georgia was roughly 22, it was about 3 for Black individuals and simply over 3 for Hispanic individuals. And whereas it was 7 for males, it was simply over 2 for ladies.
“Black people generally are underserved by PrEP, and women are underserved by PrEP relative to men,” Sullivan mentioned.
Increasing PrEP uptake would assist the state minimize its new HIV diagnoses, mentioned Dylan Baker, affiliate medical director at Grady Health’s HIV Prevention Program.
Georgia’s fee of recent HIV diagnoses was 27 per 100,000 in 2022, in accordance with the newest accessible information. That’s second solely to Washington, D.C., and greater than double the nationwide fee of 13 per 100,000. That quantities to about 2,500 new circumstances identified in Georgia in a 12 months.
Globally about 3.5 million individuals used PrEP in 2023, up from 200,000 in 2017 however in need of the United Nations’ 2025 goal of 21.2 million individuals, according to a 2024 report by the United Nations Program on HIV/AIDS.
PrEP customers in Atlanta report many challenges in getting the drug, together with price, medical suppliers who don’t prescribe it, stigma, a scarcity of inclusive advertising, and transportation. Wilkins mentioned she has run up towards all of these.
“Here I am telling you that I’m here to get tested because I have come into contact with someone who was living with HIV, and we had a sexual relationship, and you’re not even mentioning PrEP to me,” Wilkins mentioned. “That was a disservice.”
Insurers Now Required To Cover PrEP
Cost has lengthy been a barrier. The Biden administration final fall issued guidance requiring most insurers to cowl the complete price of all types of PrEP, with out prior authorization, together with sure lab work and different providers. This contains drugs in addition to Apretude, an injection given each two months.
That means insured PrEP customers shouldn’t face out-of-pocket costs, mentioned Carl Schmid, govt director of the HIV+Hepatitis Policy Institute, which lobbied for the rule.
It applies to these on the federal market plans and most massive non-public well being plans. A similar rule exists for Medicare and Medicare Advantage plans.
Schmid mentioned he doesn’t assume the Trump administration will repeal the rule, however he’s involved the U.S. Supreme Court might finish protection for preventive providers, together with PrEP, when it points a call in Braidwood Management v. Becerra, anticipated this summer season.
The rule is not going to assist the uninsured. In Georgia, which didn’t develop Medicaid underneath the ACA, about 1 million adults under age 65 are uninsured.
“The cost is also a struggle, especially given different people are part of the gig economy, a lot of folks don’t always have access to health insurance,” mentioned Maximillian Boykin, an Atlanta PrEP person.
Expanding Medicaid would assist. States which have performed so, Sullivan mentioned, “have higher levels of PrEP uptake.”
Winning the PrEP Lottery
Since getting on PrEP in 2019, Wilkins has encountered two docs who didn’t wish to prescribe it.
One feminine OB-GYN advised her “‘Girl, at our age, we should know better.’” Wilkins mentioned she “fired” that doctor, telling her that such feedback are stigmatizing.
When Wilkins moved, she seemed for a close-by major care supplier so she wouldn’t must pay for transportation to get PrEP.
But the physician she discovered, Wilkins mentioned, advised her to seek out an infectious illness specialist for PrEP.
“‘You’re not treating an infectious disease,’ I say. ‘This is preventive care,’” Wilkins recalled.
Wilkins’ fortunes turned when she was chosen to hitch a examine for a twice-yearly injectable type of PrEP.
Latonia Wilkins, an Atlanta mom, has confronted a number of challenges accessing PrEP, an HIV prevention drug.(Darriyhan Edmond)
Lenacapavir, already accredited for HIV remedy, confirmed promising outcomes for HIV prevention in two earlier Gilead trials. Wilkins is a part of a trial in Atlanta together with about 250 cisgender ladies nationally who’ve intercourse with males.
It’s a lot better than a day by day capsule or perhaps a shot as soon as each two months, Wilkins mentioned.
She hopes to remain on the drug, however the U.S. checklist worth for lenacapavir as an HIV remedy averages about $40,000 a 12 months.
Gilead final 12 months introduced it signed royalty-free licensing agreements with six producers to make generic lenacapavir for 120 primarily low- and lower-middle-income nations.
It’s not clear the place it falls with the Biden rule. “We believe it should be covered,” Schmid mentioned, “but want the federal government to state that clearly.”
For many sufferers, challenges stay. Most persons are keen to journey about half-hour for routine well being care, Sullivan mentioned, however in cities like Atlanta, these counting on public transportation could face longer commutes to PrEP suppliers. Some who want PrEP have unstable housing with out agency mailing addresses.
Privacy is one other concern. “Everybody should be able to find a place that’s comfortable,” Sullivan mentioned. “More of that can go on in primary health care.”
Others agree that public well being messaging round PrEP providers ought to goal extra numerous audiences. Dázon Dixon Diallo is the founding father of SisterLove, an HIV, sexual, and reproductive well being group centered on Black ladies within the Southeast.
“You’re not going to get to us by giving us a 3-second cameo in a commercial about PrEP,” she mentioned. “There’s no story in there for me, right?”
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Rebecca Grapevine, Healthbeat:
rgrapevine@healthbeat.org
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