PrEP vs. Privacy

When you’re a young adult on your parents’ insurance, your health decisions are a family affair. And that’s a problem for HIV prevention.

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This post is part of Outward, Slate’s home for coverage of LGBTQ life, thought, and culture. Read more here.

Although Salvador is 23 years old and lives halfway across the country, his parents back home in the Carolinas always know when he visits his doctor. He doesn’t even need to tell them: Their health insurance provider, which also covers his health care, does that for him. After each medical appointment, an explanation of benefits arrives at his parents’ place detailing every billable procedure, test, and prescription he received during the visit. So, whether Salvador likes it or not, his parents always have a sense of the state of his health.

“In general, it doesn’t bother me to discuss health problems with my parents,” Salvador wrote in an email. But lately Salvador has been mulling over a new medication regimen, called pre-exposure prophylaxis, or PrEP. Currently consisting of a daily pill marketed as Truvada in the United States, PrEP is 99 percent effective at preventing an HIV infection when taken correctly. Salvador wants to take PrEP but feels he can’t, not with his parents essentially looking over his shoulder. Salvador is gay. His parents don’t know, and he’d prefer to keep it that way. Any HIV treatment, even one being used in a preventative capacity (Truvada functions as both), could send up a red flag in the form of an EOB from the insurance company to his folks back home, particularly given the historical association of HIV with gay men.

As long as this is the case, going on PrEP is out of the question not just for Salvador, but for thousands of Americans on their parents’ health insurance who are forced to choose between their personal privacy and control of their sexual health. Pioneering research published in the American Journal of Emergency Medicine last year found that while being on parental insurance doesn’t dissuade young adults from taking PrEP, associated concerns around confidentiality—like disclosing prescriptions to their parents—do. According to the study, respondents aged 18 and 26 on parental insurance were 70 percent less likely to take up PrEP if their parents could learn of their prescription.

How these outcomes differ among genders and sexual orientations is still unknown. The study’s sample notably included both gay and straight individuals, and there is reason to believe that the motivations of both groups for taking PrEP could vary. Still, the fact remains that parental insurance coverage is a significant barrier to getting on PrEP, regardless of a dependent’s real (or implied) sexual orientation.

“Parents don’t normally talk to their children about sex, so there’s no foundation or transparency of communication,” said Kelvin Moore Jr., the first author on the study and a graduating senior at Brown University. “Trying to talk about PrEP and your interest in taking the medication can be difficult if you’ve never established that foundation of sexual health transparency.”

Moore also knows this from personal experience. Like Salvador, he deliberated whether to begin taking PrEP while on his parents’ insurance. By then, he had already come out to his family as gay. Still, the prospect of discussing his sex life—that is, the fact that he has one at all—made him briefly second-guess getting a prescription.

The opacity between parent and child isn’t without consequence. While each year since 2012, HIV infection rates have fallen in many regions of the U.S.—thanks in large part to PrEP—Americans between 18 and 26 years old still straddle the two age groups (20–24; 25–29) that account for the most new HIV cases annually, according to the Centers for Disease Control and Prevention.

When the Food and Drug Administration approved PrEP for use by HIV-negative adults in 2012, activists and health care professionals hailed the drug as a “miracle pill” that could go far toward ending the HIV/AIDS crisis. Since then, Truvada has lived up to its early reputation as a powerful prevention tool. In New York City alone, the introduction of the drug helped the number of new HIV infections drop by more than 30 percent between 2013 and 2017.

What has proven successful on the whole, however, has not been born out evenly across American society. Accessing Truvada—which costs close to $1,500 a month out of pocket—remains an impossibility for many Americans, particularly those who are uninsured and living outside major cities, where physicians tend to be less familiar with the drug. In fact, as annual HIV infection rates have dropped in some metropolitan areas, once hotspots of the AIDS epidemic, the total number of new cases has remained stable in the rural South where poverty is endemic and quality health care remains elusive—especially for Black and Latino communities.

As an insured 23-year-old living in a large Midwestern city, Salvador should not face significant barriers to getting on PrEP. His problem instead lies in a peculiarity of the American health care system intended, ironically, to unburden young Americans. Under the Affordable Care Act, Americans may remain on their parents’ health insurance plans until the age of 26. Considered to be one of the health care law’s crowning achievements, the provision extended insurance coverage to as many as 3 million Americans in the two years after the ACA became law, but notably, it did not include specific protections for safeguarding dependents’ confidentiality. As a result, parents in most states continue to receive their adult children’s medical statements although they’ve relinquished legal authority over their kids.

Under most circumstances, the Health Insurance Portability and Accountability Act, HIPAA for short, would protect against these types of disclosures. However, the federal rule does permit the release of certain information in billing and statements, like an EOB.

Privacy advocates have long recognized the inadequacies of both HIPAA and the Affordable Care Act in protecting patient confidentiality. But finding a federal solution to the problem would require the support of congressional Republicans, many of whom are still engaged in a marathon effort to repeal the ACA. Strengthening one of the law’s hallmarks remains far beyond the realm of possibility on Capitol Hill. The task of reform has therefore fallen to individual state legislatures.

According to the Guttmacher Institute, 13 states have enacted laws to protect patient confidentiality. Five of these—California, Colorado, Maryland, Oregon, and Washington—require insurance providers to send confidential communications directly to dependents, not the policyholder, upon written request. New York and Maryland also permit EOBs to be sent directly to a patient or to be withheld by the insurance company if there is no outstanding balance. The remaining states have special protections for dependent minors.

Most recently, Massachusetts joined these 13 states when it adopted the bipartisan Act to Protect Access to Confidential Health Care last year, which allows residents to request EOBs through HIPAA-compliant means. “The onus of this legislation is confidentiality — but its core mission is access,” Democratic state Rep. Kate Hogan, who co-sponsored the bill, wrote in a statement. “Before the PATCH Act, this loophole in patient privacy, and the very real concerns about exposure it posed, was actively standing between Massachusetts residents and health care.”

The new law has far-reaching implications. Apart from the LGBTQ community, survivors of sexual assault and domestic violence will now be able to seek medical and psychiatric treatment without fear of their abusers finding out. “Residents struggling with addiction, individuals coping with mental illness, adults seeking sexual or reproductive health services,” Hogan added, also benefit under the PATCH Act. Now, the focus for Massachusetts and other states with patient confidentiality laws is convincing insured Americans that these protections actually work.

“It’s a really tough thing for folks,” said Nashoda Temperly, manager of benefits navigation at the Cascade AIDS Project in Portland, Oregon. “Even though there are policies on board and the state of Oregon does support this, I still think, on the ground, people just have such levels of mistrust that they don’t want to jeopardize [their privacy].”

The oldest and largest community-based provider of HIV services, housing, education, and advocacy in Oregon, CAP works with a number of communities that historically have been affected by the disease. For three years now, the organization has provided PrEP-related counseling. Temperly has worked in this capacity for two. In that time, he has seen interest in the drug soar. “I’ve really seen an exponential growth,” Temperly told me in a phone interview. “Our first year, we maybe only facilitated about 50 enrollments.” Since July 2018, the organization has met with 352 interested users, whose average age, Temperly estimated, was somewhere in the late 20s.

Interest doesn’t always result in action, however. “A lot of times people have such levels of fear, they either stop, give up, or they apply for a different [health insurance] plan if it’s available,” he said. When this is the case, Temperly will direct people to the state’s Medicaid program or attempt to get them on a second private insurance plan, though this process can be filled with pitfalls.

Back in the Midwest, Salvador is well-aware of these difficulties. Doctors have prodded him to start taking PrEP, but none so far have found a way to skirt his insurance. “All I’m told is to contact Gilead,” he said, noting the manufacturer of the drug. (The company offers a copay assistance program to defer the cost of Truvada, but this may only be accessed with insurance. In other words, it’s a dead end.) Salvador has also considered going to Planned Parenthood, though he’s “intimidated by the process of making an appointment and just going there by [himself].”

Salvador’s only solution in the meantime is to utilize other safe-sex practices, like wearing a condom. It’s the next best thing—by a long shot. Latex condoms still can break, and many people have contracted HIV this way. Yet, of the at least 455,000 people worldwide who have used PrEP at some point, the known number of times it has failed is only seven. For Salvador, these are odds that make PrEP so desirable and the inability to access the drug that much more painful.