The Neverending Fight and Plight of PrEP Counselors

"PrEP is revolutionary," said Angela Charles, a PrEP counselor for the Hyacinth AIDS Foundation in New Jersey.

Abraham Linares, also a PrEP counselor in New Jersey, for Zufall Health Center, agreed. "PrEP is a way to say, 'I can have agency over my own health.'"

Charles, Linares and many like them are frontline workers and coaches for all things pre-exposure prophylaxis, or PrEP.

PrEP counselors go by different names throughout the country—in New York, for instance, they're called "navigators"—but whatever you call them, they each have the mission of giving the treatment its furthest reach possible to ensure it gets to people who need it most.

Everyday hurdles to PrEP

PrEP is a once-daily pill that prevents HIV infection. It sounds simple, but in a world of evolving healthcare challenges, a PrEP counselor helps break through barriers to get their clients the PrEP they need for as long as they want. Such barriers can include insurance, access, proper adherence—even doctors themselves.

"An average doctor will know what PrEP is but not how to deal with it," Linares said. "Especially if the patient is queer or trans. Some doctors refuse to prescribe PrEP."

The doctor's confusion and potential queerphobia can infiltrate and eclipse the needs of the patient, often leaving them at greater risk of HIV exposure. Charles has found the doctors she works with often have no idea about PrEP and are quick to change their minds once they do their homework.

"A lot of doctors don't know anything about PrEP," Charles explained. "PrEP is not necessarily taught in med school. If they're not learning about it in med school or residency, then they're not going to know about it."

In some cases, doctors are still hesitant to engage with PrEP on a wide scale and because of it, people most at risk of HIV infection are being left behind.

The frustration of finances

Another barrier is insurance companies, which Linares explained can be uncooperative and unwilling to pay for PrEP.

"The largest barriers are insurance and access to health care," he said. "People who are uninsured or undocumented with no access to insurance aren't able to access [PrEP]."

The issues go beyond insurance and healthcare access, too. "Even with as much help as we can offer, there are certain things we can't cover," Linares continued. "Often, it's things that aren't medical, [such as] housing, how will they make it to their appointments [and] how will they keep their medication safe."

For instance, Charles once had a client who lost everything in a house fire. Since her client had no cellphone, Charles had no means of contacting them—a grim illustration that PrEP is not just an issue of health care, but one of overall access to housing, money and safety.

A typical sit-down

It's the counselor's job to overcome and mitigate these barriers as they attempt to bring PrEP to their clients. While the barriers may change, a counselor's interactions with their clients remain consistent.

"Typically I get referrals," Linares said. "Some people come back for repeat STI screenings. Actual counseling begins at the moment they begin considering that choice [of starting PrEP]."

There are a series of questions the counselor asks themselves and their client, including: "Is this important to you?" "What does it mean to not use a condom?" and "Is there any stigma around PrEP or using a condom?"

Linares said some sessions take 10 minutes, while others can take half an hour or more.

"[Potential clients] come in for testing," Charles added. "The tester asks them if they want PrEP, and if they do, the tester refers them to me. We talk about PrEP. I go through the medications—PrEP is composed of two medications—how they have to take it every day, what side effects they could experience and how long it takes to become effective."

Future forecasts

Everyone needs help, even the counselors helping others get PrEP. For Linares, that help starts with "affordable health care. Having free or easier access to health care would be the biggest way to help."

But the trickle-down barriers to PrEP need just as much overcoming. The Hyacinth office where Charles works does not have a medical professional who can prescribe PrEP. Thus, a lot of her job is waiting for non-Hyacinth doctors to issue prescriptions.

"It would be helpful to have a prescribing nurse or doctor," Charles said. "Doctors often change their mind. It's hard not having a doctor to prescribe."

These gaps will need to be addressed to continue the longer-term mission of PrEP advocacy: full, healthy lives for people in need, especially in the LGBTQIA+ community.

'[PrEP] has allowed for the communities at higher risk [of contracting HIV] to have a special connection to our sex lives in a world where we are demonized for that. It gives us that chance.'

"There's a reason why we don't have a lot of queer POC (people of color) seniors," Linares said. "[PrEP] has allowed for the communities at higher risk [of contracting HIV] to have a special connection to our sex lives in a world where we are demonized for that. It gives us that chance."

"You don't have to use PrEP," Charles said. "You can stop whenever you want. [But] if you have HIV, you can never stop taking medication."

Fortunately, Charles said, the medication is evolving in a way that will even further increase its benefit.

"I am so excited for injectable PrEP," she said. "People won't have to worry about taking it every day because people forget to take their pills."

Perhaps with the advent of new PrEP methods of treatment, counselors will change and adapt. But as long as PrEP is inaccessible to those who need it most, the need for counselors to break down those barriers and act as an intermediary remains imperative.