Wisconsin Isn’t “Prepped” for HIV-Preventing Drug PrEP

Pride flag raised during the month of June at the Wisconsin State Capitol in Madison. (Photo credit: John Hart/Wisconsin State Journal)

Brian Conway was let down, again. A health care insurance agent from their network confirmed that Conway’s HIV self-testing kit, and mail-order prescription for PrEP, would be denied. Conway reached for their phone to schedule an appointment at the Holton Street Clinic in Milwaukee, soldiering on in their next attempt at getting PrEP.

For nearly five months, Conway had been trying to get a prescription for pre-exposure prophylaxis (PrEP) with no success. The oral drug, also known by its brand names of Truvada and Discovy, is designed to prevent HIV in those with a high risk of contracting the disease, such as men who have sex with men. PrEP is advertised as readily accessible in Wisconsin, but anecdotal evidence and prescription statistics paint a picture of steep social and economic barriers for patients. Bureaucratic red tape from Conway’s insurance company and the potential out-of-pocket costs for the drug are just two of the major access barriers stalling their progress.

“If I had this prescription, it would give me such peace of mind,” says Conway, who is a nonbinary, second-year medical student and lifelong Wisconsin resident. He was assigned male at birth and uses he/they pronouns. “I’ve tried my health care network in my rural hometown, Milwaukee clinics, mail-order PrEP labs, and I’m not totally eligible anywhere.”

When taken consistently and correctly, PrEP is highly effective, preventing 99 percent of infections through sex and about 74 percent of infections through injection. Despite the high rates of effectiveness, only a small amount of individuals who would benefit from PrEP have been prescribed the drug. A 2019 report from Harvard Health Publishing states only 135,000 prescriptions of PrEP were filled from 2012-2018. The Centers for Disease Control estimates that around 1.1 million people could benefit from the drug.

In Wisconsin, PrEP usage is varied. A 2020 report from AidsVU found that some rural counties reported zero PrEP patients while more urban counties, such as Dane County, home to the state capital of Madison, reported more than 42 PrEP patients per 100,000. This is far lower than other regions, like the Northeast, which reported up to 106 PrEP patients per 100,000. Health care experts in Wisconsin believe this is an indication of a PrEP access disparity.

PrEP navigators at the Froedtert & Medical College of Wisconsin Inclusion Clinic in Milwaukee like Rae Piette work with patients interested in using PrEP to overcome barriers like insurance co-pays, transportation, and prescription and lab costs.

“My job exists because PrEP is so difficult to get in Wisconsin. Folks don’t know what their insurance covers, they don’t know where to go to get PrEP, and in many cases, they have mistrust in the medical system,” says Piette, who uses they/them pronouns.

Piette compares their experience working in Denver to their current position in Milwaukee as “night and day.” In Denver, through a public health program called the Public Health Intervention Program, or PHIP, PrEP access was far more equitable than in Wisconsin. Anyone who wanted PrEP and met the income requirements outlined by PHIP (income less than 500% of the poverty level, or $63,000)—nearly everyone that applied—immediately qualified for a prescription and financial assistance for PrEP.

“We’re failing so many communities in Milwaukee and Wisconsin,” Piette says. “In some areas, there might not even be a provider willing to prescribe PrEP. There’s a serious disparity here.”

Every physician who practices in Wisconsin is allowed to prescribe PrEP. Still, in rural areas of the state, providers may refuse to prescribe it. Those in health care who are nonbinary, like Conway and Piette, believe it is due to social stigma surrounding HIV transmission and care.

“My primary care physician back home wasn’t sure they wanted to give me a PrEP prescription,” Conway says. They feel that stigma surrounding HIV and its transmission influenced their doctor’s decision based on the common conservative ideologies in their home county.

Other providers believe that a lack of medical education regarding PrEP, coupled with stigma, contributes to the lack of Wisconsin providers willing to prescribe the drug. Dr. Sol Aldrete, an infectious disease expert and associate professor at the Medical College of Wisconsin specializing in HIV care, says she sees examples of this unwillingness to learn in referrals she receives from primary care providers.

“I wish my colleagues in health care, especially primary care, knew prescribing and advocating for PrEP isn’t difficult at all,” says Aldrete, who tries to prescribe PrEP to any of her patients that express interest. The prescription process for PrEP is relatively simple and includes an HIV blood test and a kidney function test every three to six months, as well as a monthly prescription pick-up.

“PrEP does not mean that people can run around and ignore safe sex practices,” says Aldrete. “It isn’t a hall pass to have unsafe sex, it is a preventative measure in the same way condoms are.”

Common misconceptions about PrEP and its prescription practices are highlighted in 2017 study that asked clinicians around the United States about their opinions on PrEP. Five hundred twenty-five clinicians responded to the survey, 17 percent of which disclosed they had never prescribed PrEP. Of those who had not prescribed PrEP, one-third cited lack of education about PrEP and HIV care as the primary reason for not prescribing the drug.

It turns out, though, that the Holton Street Clinic did pan out for Conway, who finally received their PrEP prescription at an affordable rate, after nearly six months of self-advocacy and relentless searching. Despite the happy ending, Conway’s story is an example of how private Wisconsin insurance companies and outdated ideologies surrounding HIV are failing the LGBTQ+ community. Rather than treating PrEP as a medication that allows individuals to practice unsafe behaviors, like unsanitary injectable drug usage or unprotected sex, this drug should be treated as an essential tool in the fight against the continuing HIV epidemic.

Conway, Piette, and Aldrete all individually agreed that the massive roadblocks to getting PrEP in Wisconsin are diminishing the quality of life for those that need prescriptions. It is clear that efforts to educate providers and banish the stigma of HIV prevention and health care are long overdue in Wisconsin, and advocacy is crucial to dismantle barriers surrounding PrEP access.

“If LGBTQ+ members have to beg and hunt for something that could save their life, that’s not equitable health care” says Conway. “This process should be as easy as getting birth control. This is an issue everyone should be invested in.”