When Keeping A Secret Trumps The Need For Care

Dana Lam was insured under her parent's health plan until the end of 2014, thanks to a provision of the Affordable Care Act that allows young adults to stay on family health insurance until they turn 26.

The arrangement worked out well until she needed treatment for depression. Lam knew that if she used her parents' health plan to see a psychotherapist or psychiatrist, her visit would show up on their insurance statements.

She wasn't ready to talk to them about her mental health issues. "I was just so afraid of having that conversation with them," she says.

She was able to use her school's free counseling services instead, but there was a catch. "Medication is really what I needed," Lam says. She couldn't afford to pay for medicine without using insurance, she says, so she didn't take any.

When she graduated, Lam's part-time job didn't come with benefits, so she stayed on her parent's insurance and she stopped getting help of any kind. "I looked around for free mental health care or community centers, but I didn't find much of anything," Lam says.

Now Lam is 26 and teaches English as a second language in Orange County, Calif. She has her own insurance, which she bought on the state exchange. She's getting the help she needs, and she recently told her parents what had been going on. "But if I didn't have to worry about privacy, I definitely would have gotten help sooner," she says.

Lam's situation isn't unique. Millions of young adults have been able to stay on their family insurance plans since that provision of the Affordable Care Act took effect in 2010. But studies show that young people often hesitate to get certain types of medical care, such as mental and behavioral health care, birth control and sexual health screenings, because they don't want their parents to find out through insurance statements.

Now several states are testing ways to solve the problem, but none has a foolproof solution.

"The issue of maintaining confidentiality while a dependent is one that has existed for a long time," says Abigail English, president of the Center for Adolescent Health and the Law, a nonprofit advocacy group. "It's just receiving more attention now, because of the ACA and the increase in the number of dependents."

On NPR's Facebook page, we asked young adults to tell us about their concerns about privacy while on their parents insurance. Some said they avoided the doctor altogether, while others paid out of pocket or sought low-cost or free treatment at Planned Parenthood and community clinics.

Those who want to use their family insurance while maintaining privacy do have some options. Under the national medical privacy law, known as HIPAA, dependents have the right to ask insurance companies to redirect statements detailing sensitive medical information to a different address.

But the law implies that insurance companies are obligated to honor such requests only in cases where sharing medical information with parents would endanger the patient, English says. And it doesn't make it clear what patients have to do in order to prove that they're in danger.

Often, patients find the process of making such privacy requests too complicated or daunting, she says.

And then there's the issue of awareness. "Many young people don't even know that they have the right to do this," English says. So, many young patients avoid using their insurance to get some types of care.

That's what Becca Holt, 23, did when she was in high school. Her parents' insurance would have covered birth control, but she didn't want them to know that she was sexually active.

"I was so nervous about them finding out. So I just went to Planned Parenthood, and I told them about my situation," she says. Holt lived in Sacramento, Calif. at the time, and Planned Parenthood helped her sign up for a statewide assistance program that helps people pay for birth control and preventative sexual health appointments.

People worried about privacy should try community clinics, says Clare Coleman, who heads National Family Planning and Reproductive Health Association.

But in the long term, it can put a strain on public funds allocated to helping those who truly lack health care, she says. "Wouldn't it be much better if patients who have insurance could just use that resource without worrying?"

A California law that took effect this year now allows people to ask insurance companies to keep sensitive health information private by submitting a single page-long form. Those who fill out the form can have their billing information sent to a different address, sent via email or made accessible online.

"It's designed to close loopholes in the existing federal laws," says Kathleen Tebb, an assistant professor at the University of California, San Francisco School of Medicine. Patients don't have to explain why they want their information kept private, and insurance companies are required to comply.

But the process isn't as simple as it seems, Tebb says. Not all insurance companies have the infrastructure in place to honor these requests.

Even when young patients manage to have insurance statements redirected, their parents can call up the insurance company ask about billing information, such as how much of their deductible has been met. Mom or Dad may wonder how their $2,000 deductible was met so quickly, and ask the kids what they've been using the family plan for.

Washington and Maryland have laws similar to the one in California. Colorado does, too, though it only applies to patients who are over the age of 18. Connecticut, Delaware and Florida offer confidentiality for treatment of sexually transmitted disease. In Massachusetts, advocates are pushing for laws that would require insurance companies to automatically withhold billing information for sensitive services.

"A number of states are struggling with this," she says. "Because it's extremely difficult to balance the privacy needs of dependents and the needs of policy holders."