When confidentiality is not guaranteed, young patients miss out on essential health care | Expert Opinion

“I can’t have my parents finding out that I’m gay.” That is what I heard from a young man in clinic while discussing PrEP, a medication that protects people from contracting HIV. This medication has kept thousands of individuals like this patient safe and healthy. But he was worried his parents would discover this medication, and therefore his sexual orientation, when his insurance company sent out an explanation of benefits (EOB) to his parents.

No one should live in fear of being “outed.” It is even worse that health insurers may be the cause of this worry. Unfortunately, young adults who remain on their parents’ insurance in Pennsylvania have limited capacity to prevent their health information from being shared. These privacy concerns can lead to gaps in care, not only in the area of sexual health, but also in treating mental illness and substance abuse. We need to strengthen state and federal legislation to help young adults access the care they deserve.

Following Joe Biden’s victory in the presidential election, efforts to adapt and expand the Affordable Care Act (ACA) will likely inform health policy decisions in the next administration. The ACA transformed health care for young adults, and it is important to celebrate its successes. By allowing young adults under age 26 to remain on their parents’ health insurance, the ACA greatly increased medical access for this vulnerable population. Nearly 3 million people gained coverage between 2010 and 2011 alone. But we must also acknowledge the ACA’s flaws. By not providing stronger privacy protections, the ACA may paradoxically prevent some young adults from receiving necessary health care.

EOBs are sent to the insurance policy holder (the parents) instead of to the patients themselves, often revealing sensitive medical information and compromising patient confidentiality. As a comparison, if we as medical providers were to disclose similar information about our patients, we risk losing our licenses. In efforts to prioritize patient confidentiality, we talk with young adults about the benefits of medical interventions vs. the costs of violating their privacy.

These insurance complexities have real life consequences. Young adults have some of the highest rates of mental illness, HIV, and sexually transmitted infections in the United States.

Yet research shows that privacy concerns may cause young adults to defer mental, reproductive, and sexual health care — only rendering them more vulnerable to these conditions.

Alternatively, some young adults may choose to access these services by circumventing the system. For example, in 2014, 14% of people who used Title X federal assistance to access family planning services could have utilized private insurance instead. Other young adults may drop their parents’ insurance and join Medicaid, which sends them health information directly. Though this appropriate use of Title X or Medicaid by those with access to private insurance should not be discouraged, it could limit the resources available to those who are underinsured or uninsured.

To partially address these challenges, federal law allows patients to request that insurers not send EOBs or conceal sensitive care in the EOBs. However, insurers aren’t obligated to honor these requests. Some states have taken further action to ensure patient confidentiality. Massachusetts’s PATCH Act, for example, requires insurers to send an EOB to the patient’s preferred address and hide sensitive details about care upon a patient’s request. Pennsylvania and New Jersey, unfortunately, do not offer this extra protection.

Assuring confidentiality to young adults is key to increasing access to care in this vulnerable age group. A simple way for the incoming Biden administration, or individual states, to improve patient confidentiality would be to enact their own versions of the PATCH Act. Meanwhile, those of us that interact with young adults need to be honest about these challenges to confidential care. We can help these individuals approach their insurance companies to ask what protections the insurer is able to provide.

Unfortunately, the young man I saw in clinic did not receive a prescription for PrEP. Despite hours of phone calls to other health providers, his insurance company, and the pharmaceutical company that manufactures PrEP, we could not provide the young man with a prescription because of these confidentiality concerns.

The young man’s story is shared by other young adults in similar situations. It is time for those stories to change. Through strengthened legislation and more cooperation from insurance companies, let’s help guarantee young adults a new story — one of access to health care and optimal well-being, unfettered by insurance disclosures.

Daniel Resnick is a fourth-year medical and health policy student in Philadelphia. Jeffrey M. Eugene is a pediatrician and an adolescent medicine fellow in Philadelphia.