After a few weeks of texting, Oliver stopped answering my messages. I took the hint and accepted that the conversation was on hold, at least for now. I didn’t take it personally, but I did find myself concerned. Oliver had first responded to an ad I placed on Craigslist with some concerns of his own. They were questions that I was excited to help him work through. He wanted to know how he could start taking PrEP while on his parents’ insurance. Starting PrEP under these circumstances can be an uphill battle for some, but it didn’t have to be.
PrEP (or pre-exposure prophylaxis) involves an HIV-negative person taking a pill once-a-day to lower their risk of contracting the virus. In certain pockets of the country, PrEP has been credited with reducing the number of new HIV infections. But in the 5 years after PrEP was approved by the Food and Drug Administration, the number of new diagnoses in New Hampshire has remained stubbornly stable. PrEP is safe and effective, but massively underutilized right in the middle of multiple STI outbreaks and the HIV risk we know this represents.
We started Granite State PrEP Connect last summer to help unlock the potential of PrEP in our state. We wanted more people in New Hampshire to get the facts and support they need to live their healthiest lives. Sometimes that fact is just the knowledge that PrEP exists, that it’s covered by insurance, Medicare and Medicaid, that any medical provider with a prescription pad can get you started. Since launching, over 100 Granite Staters have connected with the project and I’ve personally counseled almost 50 individuals on PrEP. Four have started care but dozens more have gotten linked to other crucial services from STI and HIV testing referrals to information about payment assistance. It’s an accomplishment we’re proud of, but there is more to be done, especially for the most vulnerable among us.
For Oliver (whose name has been changed here for privacy), he first wanted to know where he could get free condoms and testing for HIV and other sexually transmitted infections. From there, I assured him there were options to access PrEP confidentially if that was his concern. He grabbed those condoms, he said he found the clinic I recommended that offering free testing, and then, nothing. My colleague at the health department said nobody stopped by matching Oliver’s description or mentioning our project.
I knew things would be okay regardless of how Oliver’s HIV test result might have turned out. If it came back positive, Oliver could start on any number of treatments able to reduce the amount of virus in his blood to undetectable levels. If the test came back negative as Oliver was expecting, there would be more good news there as well. Oliver would have variety of options to stay HIV-negative. Condoms, of course, are always on the table for the taking if he wanted; that hasn’t changed. Newer to the scene, though, PrEP and an open line to help make that a reality would also be within reach. Even if Oliver were able to access these services without my knowing, both experience and the numbers tell me that Oliver might have a harder time accessing PrEP than some other Granite Staters with whom I’ve worked.
Youth are among the most disproportionally affected by HIV nationwide, accounting for over one in five of our country’s new infections. They are less likely to know their HIV status and face special challenges in accessing preventative services like PrEP. Oliver is not yet 25 years old and thus fits comfortably in this category of heightened vulnerability. The recently published 5-year summary report from the New Hampshire STD/HIV Surveillance Program suggests this risk is not equally spread across the state. We know that people in southern counties and men who have sex with men carry the greatest burden, but zoom in closer for a clearer view of the picture these numbers paint. In 2016, the rate of infection in Black New Hampshire residents was over 10 times that of the overall rate. The rate was over 4 times greater among those identifying as Hispanic.
Inequities like these are not based on our biology but rather baked into our social fabric. The burdens of medical mistrust, traveling large distance to providers, and having to navigate a complicated insurance system to get covered weighs far more heavily on some us than others. The question then becomes how do we, as a community, leverage the tools we have to better care for those most affected by HIV in the Granite State? People are still getting left behind somewhere between risk and risk reduction. Those on the front lines of the epidemic must be armed with this information about the latest and greatest in HIV prevention.
I consider it a privilege to run the PrEP Line, to attend my community’s questions and concerns before and after (and sometimes during) class. This service ought to be busier, though, to have more folks calling in and spreading the word. The Granite State PrEP Line is open to all those who would benefit for connecting, from testers to harm reduction workers to public health officials to medical providers of all stripes. Bending the arch of the epidemic toward zero new infections requires collaboration. To do it right, as our name suggests, we need to connect.
There are no easy fixes for the reasons the Granite State HIV diagnosis rate has held so steady in recent years. We can hope and try to best to ensure the Olivers of tomorrow have an easier time making informed decisions about their own health. For now, however, our options aren’t half bad. Among them: PrEP for prevention, treatment that works, and texting a stranger (Hi, I’m Jake!) to take your next step.
Jake Perlson, Founder, Granite State PrEP Connect
MS2, Geisel School of Medicine at Dartmouth