This HIV-prevention drug is often not prescribed to those who need it most

When Poppy Morgan met her husband in 1999, HIV was a curse word, one that made her body cringe. She had recently moved to San Francisco, a city that comprised almost four percent of all AIDS cases reported nationally and where over 15 thousand people lived with the virus. Morgan’s husband was one of them.

By the summer of 2009, the couple had spent five years exploring options to get pregnant. They wanted a child but kept encountering obstacles. Some adoption agencies still saw HIV as an excuse to disqualify potential parents — though the law had prohibited that kind of discrimination since 1990. Other alternatives like sperm washing, a technique that separates individual sperms from the rest of the HIV-loaded semen, were not really promising nor covered by Morgan’s insurance.

Just when she was about to choose a sperm donor, Shannon Weber, a perinatal coordinator at the University of San Francisco and a friend of Morgan, told her about a new strategy that could prevent people from getting infected. The practice, which we now know as pre-exposure prophylaxis (or PrEP), involved taking a daily dose of an HIV medicine called Truvada for several days. Eventually, researchers have found, the body builds up a shield strong enough to paralyze the virus’ ability to replicate and prevents it from passing on the infection to other cells. The drug has shown to reduce the chances of virus transmission in most cases by more than 90 percent.

Though Truvada was not approved to protect HIV-negative people until July 2012, it had been marketed since 2004 — in combination with other drugs — to keep a low amount of HIV in the blood. Soon, rumors of its efficacy at preventing HIV for non-infected people started to spread. The news gave Morgan hope. “[PrEP] was basically what I had been asking for since day one,” she says. She printed out all the studies about PrEP she could find and took them to her primary care provider, who works at one of the largest medical centers in San Francisco. But when she asked about the medication that could make it possible for her to get pregnant, she found an unexpected reaction.

“Absolutely not,” said the doctor, who declined a request to talk alleging patient privacy. It would be unethical to support a decision that would put her patient — and a future baby — at risk. And according to Morgan’s recollection, the provider even threatened to dismiss her as her patient if she insisted.

After leaving the office, Morgan walked to the parking lot. She got into her car and cried. This was the first appointment since her doctor had come back from maternity leave, which upset her even more. “She gets to go home with her baby,” Morgan recalls thinking. “And she just decided that I don’t get to do that because she’s scared.”

Morgan’s case is not unique. Though this has not yet been recognized as a national problem, recent preliminary research and similar anecdotes have led scientists to believe that moral judgments and biases among medical providers can contribute to health care disparities and determine, at least in part, who receives PrEP — and who doesn’t.

This phenomenon does not come as a surprise to Sarah Calabrese, a psychologist at George Washington University who focuses on studying sexual health among marginalized communities. “Disparities in patient care have been documented throughout the healthcare system,” she says. “When clinical protocols and precedents are lacking — and treatment decisions rely more heavily on provider discretion — it’s easier for biases to creep in.” With PrEP being so new, it was almost predictable that this would happen.

In 2012, the year Truvada was initially introduced by the FDA as a safe way to prevent HIV, the drug faced harsh criticism. Some doctors expressed skepticism about the treatment’s potential; others demonized the pale blue pill, with one high-ranking official in the AIDS Healthcare Foundation calling it a “party drug.” It was not until 2014, when the U.S. Public Health Service published clinical guidelines for PrEP, that its use grew rapidly.

But now, after six years of government endorsement, the uptake of HIV-prevention pills has lagged. And recent surveys suggest that the medication is not getting to the communities who need it the most — such as gay and bisexual men of color, transgender people, and women. “The Centers for Disease Control and Prevention estimate that about 40 percent of people at high risk for HIV (and therefore strong candidates for PrEP) are women, but they only represent 10 percent of PrEP users in the U.S.,” says Calabrese. And even lower rates of uptake have been reported among women of color. But while marginalized groups constitute the largest percentage of newly diagnosed cases with HIV, white men make up over 70 percent of those who fill Truvada prescriptions. Others, like Latinos (12 percent) or African-Americans (10 percent), continue to be underrepresented.

The numbers are worrisome, according to Sean Cahill, a leading expert on HIV and director of health policy research at the Fenway Institute in Boston. “I think they tell us that we’re failing,” he says. “Our healthcare system is failing to get PrEP into the hands of the people who are most at risk for HIV infection.”

Just last year, a survey of retail pharmacies conducted by Gilead Sciences, the pharmaceutical company manufacturing Truvada, showed that fewer than 120,000 Americans are taking the drug even though over 1.2 million are at high risk for contracting HIV. So why aren’t more people on PrEP?

For Jeremy Pagirsky, a clinical research coordinator at the Icahn School of Medicine at Mount Sinai in New York City, there is no easy answer to this question. Typically, lower-income communities of color don’t have adequate services for HIV prevention available to them, and this alone can explain why they are less likely to look for PrEP in the first place.

But even if those services are available, it can be tricky to obtain them. Biased beliefs may lead a physician to treat a patient unfairly, according to Pagirsky. “These beliefs have been ingrained for a number of years,” he says, “and can lead a clinician to deny PrEP to a patient at risk for HIV.” This can leave people without the drug.

A handful of studies suggest that implicit biases may affect the willingness of healthcare providers to prescribe PrEP. In 2014, a survey from the Center for Interdisciplinary Research on AIDS at Yale University presented 102 medical students with hypothetical scenarios of patients seeking HIV-prevention pills. The researchers discovered that black patients were seen as more likely than white patients to engage in increased condomless sex, which led participants to be less willing to prescribe PrEP to them. In 2017, another survey of 115 medical students suggested that they were more likely to assume gay patients would become more promiscuous and sexually irresponsible when taking PrEP — which, again, led to lower numbers of prescriptions.

Calabrese, the main author of both articles, thinks that her results may not be limited to the classroom. “Social biases are unfortunately a human phenomenon, not something specific to medical students,” she says. “I think we can infer from my studies that biases could affect PrEP clinical decision-making among practitioners.”

Stereotypes and moral beliefs can also affect how primary care providers treat underserved communities. In May 2016, Giuliani Alvarenga, then unemployed and uninsured, walked into a well-known LGBT Center in Los Angeles to ask for Truvada because his stash was running low. He had been there before: as a gay man of Salvadoran descent, Alvarenga used to get tested every three months for STIs and HIV. But when a healthcare provider at the center recognized him, she told him he was being reckless.

The word felt like an admonishment. “This was coming from someone who sees a queer man of color and already has these preconceived notions that I’m overly sexual,” he says. “I was like, ‘I’m only reckless in my Givenchy dress, girl. I’m not reckless when it comes to other things.’”

The clinic provider agreed to prescribe him a bottle of pills just for that one time. But she failed to mention that Gilead Sciences, the biopharma company that manufactures Truvada, can supply the drug to people who don’t have insurance coverage. By the time Alvarenga found out about this, it was already too late. The bottle lasted him a month, and by mid-July he got infected with HIV.

When he blogged about his experience, people started to call him out. “They were saying, ‘Well, you deserved this because you did not wear a condom,’” he recalls. “But it’s easier to stigmatize than it is to advocate for more resources for queer [people] of color.”

The response sounds familiar to Douglas Krakower, an infectious disease specialist at Beth Israel Deaconess Medical Center in Boston. Some primary care providers have expressed concerns that their patients will simply stop using condoms if given HIV-prevention pills.

This fear should be discussed with each patient, says Krakower, but should not justify withholding PrEP from people. “I think a patient requesting PrEP in and of itself should be an important reason to consider prescribing it,” he says. “And even if people increase their sexual risk behaviors, the effectiveness of PrEP is sufficiently high that they will still get excellent protection [against] HIV.”

Poppy Morgan, whose name has been changed in this story to safeguard her family’s privacy, wishes she would have known this to confront her doctor at the medical center in San Francisco. “I wonder if part of her felt like it was not okay to bring a baby into my life,” she says.

Her tone hardens while she stares at her computer camera.

“But you don’t get to decide the level of risk I want to take. It’s your job as a doctor to not have an opinion about that but to give me the help I’m asking for.”

She starts talking about how she finally got PrEP from another doctor in 2010 but is suddenly interrupted by a blonde patch of tousled hair that appears on her side of the screen. “Mommy,” her five-year-old daughter says. Morgan apologizes, picks her up, and lets her sit on her lap. She has a cold, her mother explains. But other than that, the child looks curious and healthy. “All is good. I’m negative; she’s negative,” Morgan says. “I call her our little miracle PrEP baby.”