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HIV and STI Anxiety – Changing the Narrative by Mario G. Forte, PrEP Navigator

Over the past three years, I’ve been educating people about PreExposure Prophylaxis (PrEP), a one pill once a day medication that helps prevent HIV, and successfully assisting them through the complex navigation process towards access. In almost all cases, the individuals that crossed the PrEP access finish line had some sort of anxiety about contracting HIV and wanted to be on PrEP.

What I’ve learned during these three years, is that epidemiology (statistics) on the HIV epidemic suggests that some people – race, poverty levels, sexual activity, sexual identity, injection drug use, etc., – are at higher risk for contracting HIV than others. Funding efforts attempt to “target” these at risk individuals to provide education, information and hopefully, PrEP access.

While I fully understand the reasoning and rationale for using the term and mythology of “Targeting”, those individuals that feel they are being “targeted” are inadvertently being stigmatized and shamed, just for being in the at-risk category – regardless of whether they are at risk for contracting HIV. In my opinion, this is not a formula for success for trying to get people that may be at high risk onto PrEP.

Here are a couple of examples of what I’m talking about:

*A person goes to the Health Department and tests positive for a Sexually Transmitted Infection (STI). The clinician (correctly) identifies this person as someone who should probably consider going on PrEP, gives the person the contact information of a PrEP navigator, yet the call is never made. I’ve had conversations with several people that went through this exact scenario. They all said they felt shame. They felt embarrassed to have been identified as someone who was “at-risk”. Their shame overwhelmed their anxiety to do anything about it.

*A person goes into a HIV/AIDS resource center / agency for an HIV test, tests negative, but is identified as a candidate who would benefit from being on PrEP and is referred to their PrEP Program. Again, they didn’t come in seeking PrEP; they came in for an HIV test. They must have had some anxiety about HIV to walk in the door and ask for the test in the first place.  Did the person have a recent encounter and HIV scare? Did they walk in the door inadvertently seeking PEP (Post Exposure Prophylaxis), a four-week regimen of HIV meds- Post Exposure to HIV, but didn’t know that’s what they were doing? So why didn’t the PrEP referral work?

It’s true. Being HIV positive is no longer the death sentence it once was. People in care are able to live full lives managing the virus. We don’t hear about HIV so much in the news any more. A lot of young adults never lost anyone to AIDS. HIV may not even be (or may not have ever been) on their radar. So how do we help people come to care enough about their own health to have anxiety about HIV and STI’s? That is the question we need to answer to get more people on PrEP.

I believe if we are to be successful reaching out to people about PrEP, the narrative needs to shift from “I’ve identified YOU as someone who would benefit from using condoms and being on PrEP” to: “Do you have anxiety about HIV or other STI’s? If so, I can help. Would you like to know about condoms and PrEP?” Our goal should be to inform or remind people that they SHOULD be anxious.

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