Retaining Patients in PrEP Care Faces Many Hurdles, Studies Show

Most people who could benefit from pre-exposure prophylaxis (PrEP) are not accessing it, the U.S. Centers for Disease Control and Prevention (CDC) revealed at this year's Conference on Retroviruses and Opportunistic Infections (CROI 2018). As Kenyon Farrow has reported, many men of color who have sex with men (MSM) are unaware of this biomedical HIV prevention method.

"I think the biggest issues are knowledge, stigma, and access," David P. Holland, M.D., M.H.S., of the Fulton County Department of Health in Atlanta agreed. Word of mouth seems to be spreading that knowledge, he noted, but stigma and distrust of the medical system in general remain barriers his clinic is trying to overcome. "Access remains a problem for people without insurance (there are simply not enough providers), but of all the barriers this one is the most straightforward to fix," he added. People without health insurance are actually more likely to stay in care at his clinic, although this may simply mean that people with insurance get their care elsewhere, he said.

Navigating Complex Health Systems

While pharmaceutical companies' patient assistance programs may pay for the medication itself for those without health insurance, related medical services are not necessarily covered, a study published in the Journal of the International AIDS Society has noted. Researchers compared data on retention in PrEP care among three clinics located, respectively, in Rhode Island, Mississippi, and Missouri. Fifty-seven percent of the 171 people who were prescribed biomedical HIV prevention across the three sites were still in care six months later. Overall, the study found insurance status and medication costs not to be a significant barrier to PrEP. However, obtaining pre-approval for the drug or enrolling people in assistance programs required significant staff time, study authors noted.

Related: Four Models of PrEP Service Provision to Enhance Access and Uptake

This is especially true for many of the young men who qualify for PrEP but have little experience navigating these systems, Leandro Mena, M.D., M.P.H., one of the study's authors and medical director of a clinic in Jackson, Mississippi, said. The mean monthly income of patients at his clinic is $1,000, making commercial health insurance unaffordable for most of them, as Mississippi is one of the states that has yet to expand Medicaid to the uninsured who would qualify. "So, overall, training of health care providers (including non-clinical staff) is important, as well as having staff capable of providing assistance in navigating uninsured and underinsured individuals to existing resources to assure access to PrEP," he noted.

Challenges With Keeping Up With Appointments

Lack of transportation and inability to take time off from work to visit a provider are other problems that may make PrEP difficult to access. "In some cases, PrEP wasn't the best option as there were too many steps involved to obtain the medication and follow up, and more pressing life issues to tackle," Ken Almanza, a TelePrEP navigator with the Los Angeles Department of Health, told TheBody by email. Another issue Almanza named is the fear of many people living in small towns and rural areas to disclose their sexual behaviors to a medical provider, who may be connected to one's family, friends, employers, or other networks.

The CDC recommends that people who take PrEP see a health care provider every three months. A five-year study published in Clinical Infectious Diseases has found that few people keep all quarterly appointments for an entire year. During 4,523 person-years of follow up at a Chicago clinic, only 15% adhered to all four visits during the first 12 months of taking their medication. Although half of participants were less than 30 years old and 6% were transgender or gender non-conforming, no difference in retention in PrEP care based on age or gender identity emerged. Those without health insurance visited twice a year but were less likely to complete all four visits than participants with consistent insurance. Conversely, having other health issues increased the likelihood that someone remained in PrEP care. "Thus, identifying clients at risk for retention failure, including those without any other comorbidities or the uninsured, is critical to PrEP implementation and ongoing HIV elimination efforts," study authors concluded.

PrEP Use Higher in the Northeast

Location also matters, a study published in AIDS Patient Care and STDs has shown. Here young MSM were recruited via social media from across the U.S. Overall, 3.4% of 2,347 participants had used PrEP, although 65% met at least one of the CDC's indications for biomedical prevention. Those living in the U.S. South and West were less likely to have health insurance than those in other regions. Lack of insurance was cited as a barrier by 15% of respondents who did not use PrEP. Similarly, AIDSVu has reported that biomedical HIV prevention has been used in the Northeast at twice the rate of the South, West, or Midwest. "This finding is particularly troubling, given that the highest rates of new HIV infection are in the South, and southern blacks have a higher prevalence of HIV there than other ethnic groups," study authors noted.

Beyond health insurance, a variety of barriers to more widespread PrEP use remain, including the frequency of appointments, navigating payment systems, and confidentiality issues in rural communities. Regional disparities must also be overcome.