Like many HIV clinicians, Robert Goldstein, M.D., Ph.D., spends a lot of time thinking about the patients who never step foot in his office. With one out of every seven patients unaware of their HIV status, many never make it to the first step in the HIV care cascade: diagnosis.
At the annual IDWeek conference in Washington, D.C., Goldstein helped organize a session that drew attention to three groups that are unlikely or unable to seek medical care: transgender patients, adolescents, and the currently and recently incarcerated.
"As we think about the care cascade, we can't even test people to diagnose them if we can't get them in the door to a health care setting," said Goldstein, who is the medical director of the transgender health program at Massachusetts General Hospital.
Goldstein explained that transgender people face rampant discrimination and are often turned away from health clinics. When it comes to children and adolescents, they are often unwilling or unable to seek sexual health care -- precisely at a time when they are most at risk. Meanwhile, incarcerated people "have no place to land" once they leave the prison setting, he said.
Goldstein, alongside his colleague Virginia Triant, M.D., M.P.H., assistant professor of medicine at Mass General, organized an IDWeek session called "Populations with Disparities in the HIV Care Cascade." There, clinicians gathered to learn about best practices to care for these historically disadvantaged groups, including best practices for pre-exposure prophylaxis (PrEP).
Think you've never had a transgender patient? Think again, says Asa Radix, M.D., M.P.H, senior director of research and education at the Callen-Lorde Community Health Center in New York City.
There are about 25 million adults across the globe who identify as transgender or gender non-conforming. That means, Radix said, "there are as many people identifying as trans as there are natural redheads -- so you definitely have a trans person in your clinic."
Although transgender people have a high risk for HIV infection, many are reluctant to visit a doctor's office -- and for good reason.
"No matter where you are, trans people face dire rates of hate, hostility," said Radix. "About a third are being bullied in schools. About half facing family rejection. One in four avoid medical care."
One of the best things providers can do for their transgender patients is to create a more inclusive environment. That means putting up posters of transgender people in waiting rooms, implementing appropriate intake forms, and training frontline staff on the basics of gender-inclusive language.
For HIV-negative patients, another important step is encouraging PrEP uptake. Some transgender patients -- transgender women in particular -- may be anxious about taking PrEP because they believe it will interfere with hormone therapy.
And, as Radix explained, the data on PrEP use in transgender people is thin. According to a subgroup analysis of iPrex trial participants who identified as trans-female or used feminizing hormones, it's clear that PrEP is not as efficacious in this group. However, Radix noted that there were low rates of adherence in this group as well.
"I always tell patients that there were no seroconversions in anyone who had levels indicating taking four or more pills a week," Radix said.
Among transgender men, a recent 2019 review found high rates of PrEP eligibility but very low rates of PrEP uptake.
The bottom line, according to Radix, is that the medical community should support studies of transgender people in research. In the meantime, doctors can support their transgender patients with more inclusive policies and by encouraging PrEP uptake.
"When you're working with a community that is underinsured and has difficulty navigating medical spaces … you have to be really proactive and help people's path," said Radix.
According to the Centers for Disease Control and Prevention, the highest rate of onward HIV transmission arises from adolescents and young adults. Anne M. Neilan, M.D., M.P.H., an infectious disease physician at Mass General, explains that that's because adolescents and young adults experience a variety of unique challenges in accessing sexual health care.
Their brains are changing dramatically, and they are still often tied to their parents' health insurance -- which makes it difficult to protect privacy, she explained.
During her talk, Neilan told the story of one of her patients -- a teenage black man who has sex with men (MSM) -- who requested PrEP but didn't feel ready to tell his parents about his sexual activity. That teen's PrEP use was later "outed" to his parents when they received a notice from their insurance provider. The parents were upset and confused, and the teen was angry.
Neilan's experience with this patient prompted her to develop better protocols among her staff for dealing with patients under the age of 26 who are still covered by parental insurance. As much as possible, they try to avoid disclosure -- but given the legal complexities of caring for a minor, inadvertent disclosure is still a risk.
There are additional considerations to PrEP uptake among adolescents. Currently approved PrEP comprises emtricitabine and tenofovir disoproxil fumarate (TDF), and TDF is associated with modest declines in bone mineral density -- a particular concern among patients in the midst of puberty.
Newly approved PrEP regimen emtricitabine and tenofovir alafenamide (TAF) has less bone toxicity, but it was not approved for transgender men or cisgender women.
The bottom line, said Neilan, is that "adolescents who bear a disproportionate burden of the HIV epidemic deserve access to HIV prevention services. Improving access is a matter of justice."
When people are released from prison, HIV care is often the last thing on their mind, explained Ank E. Nijhawan, M.D., an associate professor at the University of Texas Southwestern Medical Center in Dallas. Only about a third of recently released people with HIV are successfully linked to a clinic, Nijhawan said, basing her estimate on observational data.
"When we're thinking about ending the HIV epidemic, we really need to be thinking about our jails and prisons," she said, speaking at the conference.
Although the political barriers to PrEP use in prison are high, Nijhawan pointed to two surveys -- one among women on probation, parole, or recently incarcerated, and one among MSM in prison -- which found high interest but low awareness of PrEP among incarcerated and recently released people at high risk for HIV.
Beyond caring for HIV-positive people in prisons, the legal and medical community needs to do a better job of helping people upon release. People are often successfully virally suppressed while in prison, yet they quickly fall out of care upon release.
Nijhawan and her colleagues are in the midst of an ambitious project called the Comeback study. The goal of the Comeback study, based in Dallas, is to use a medical-legal partnership model called the "Transitions Clinic Model," which was developed at the University of California, San Francisco.
The basic premise of the Transitions Model is to recruit motivated, formerly incarcerated people as peer navigators for recently released HIV-positive people. Results of the Comeback study are forthcoming, she said.
But beyond HIV outcomes, Nijhawan is calling for an end to mass incarceration.
"We cannot continue to incarcerate people at this level," she said. "This is not sustainable."