Gracie Van Brunt hasn’t left her house in seven months and won’t for five more. In those five months, she will recover from a bone marrow transplant, turn 26, and be kicked off her parents’ health insurance plan.
Ever since the passage of the Affordable Care Act in 2010, young people have had the option of being covered under their parents’ health insurance until they reach the age of 26 (before the ACA, young people were only covered until the age of 19 – or 22 if they were a full-time college student). Then, they’re on their own to find insurance through the ACA, an employer, or risk living uninsured. Despite the ACA's efforts, healthcare remains expensive, particularly if you don't have an employer's plan. So the milestone of 26 looms large for young people, especially for those with chronic illnesses, who may be unable to work and require more consistent insurance coverage to maintain multiple prescription medications and specialized care.
Gracie has Shwachman-Diamond syndrome, a condition which affects parts of the body, including the pancreas, skeletal system, and bone marrow. As part of her disease management, she has to take medications for her pancreas, have her blood taken every three months for monitoring, and have bone marrow biopsies every two years.
Compounding her worries about her upcoming birthday is her recovery from her bone marrow transplant, which is why she's not able to go outside.
“I can’t physically work because I’m medically quarantined inside of my house,” Gracie said. “So there’s no way to even make money to save up to get health insurance right now. I have a lot of anxiety about it. I’m so scared.”
Renee Brown, who has fibromyalgia, chronic pain, and endometriosis among other chronic conditions, hasn’t received consistent treatment for her illnesses since she turned 26 and aged out of her parents’ health insurance.
Renee is a 28-year-old stay-at-home mom of three young children. Her husband was recently laid off from his full-time job but even when he was working, his employer didn’t offer health insurance. She has been uninsured since she turned 26 because of the cost of getting insurance through the marketplace.
Before she turned 26, Renee was doing everything she could medically. She underwent extra tests and tried new medications, hoping to find something to tide her over through not having insurance. Without insurance, the cost of treatment is too high and she has no safety net beneath her.
“If something were to flare up so bad that I needed emergency medical assistance, I wouldn’t have it,” Renee said. “The underlying anxiety of that is every day. It’s like it doesn’t matter how bad it gets. I can’t go to the doctor because I can’t afford it.”
Renee says she can either live with the pain or “go into massive debt,” which she says she’s working hard to avoid because of her young children. Meanwhile, her conditions are “building on each other and amplifying over time” without the help of treatment.
Gilbert Gimm, an associate professor of health administration and policy at George Mason University, says going without treatment for chronic illness can make the disease itself worse in the long-term.
“Skipping [treatment] even for relatively short periods of time can significantly worsen the trajectory of certain conditions,” Gimm said. “Having prescription medications really is essential.”
Renee says she’s hoping her husband’s next job offers health insurance but the priority right now is putting food on the table, not health insurance.
“Having to be placed in a situation where you have to decide whether to continue to treat your illness with medication or afford other living expenses is a terrible choice,” Gimm said.
In some states, adults can stay on their parents’ health insurance if they are declared disabled by a doctor. That’s the case for Heather Brannelly, who lives in Massachusetts and has Crohn’s disease, Ehlers-Danlos syndrome, and small fiber neuropathy, among other conditions.
“Every year, my doctors fill out paperwork and then it’s either approved or not approved and I’m allowed to be on the insurance for another year,” Heather said. “Every year I have to repeat it.”
Because Heather is disabled by a combination of her illnesses, it’s harder for her to find a doctor who can treat her properly, one who understands the scope and complexity of her intertwining conditions. This year, she asked her pain doctor to fill out the necessary paperwork and it was approved but she finds herself concerned every year when it comes time to repeat the process. What would she do if she wasn’t approved? She isn’t sure.
Gimm says there are three main options for young adults facing down their 26th birthdays: they can either get insurance through their employers, or if they're graduate students, possibly through student health insurance options; they can enroll in Medicaid if they make less than 138% of the federal poverty level or they can purchase insurance through the marketplace, which can be costly and carry fewer benefits than employer-purchased insurance.
Right now, because of her illness, Heather has to sleep 13 to 15 hours a day. She makes a point of taking a walk with her dog every day because light exercise helps her conditions. She also recently started graduate school online where she’s studying rehabilitation counseling. Her goal is to be able to help people who are chronically ill find jobs and necessary accommodations.
If it were up to her, she would go into private practice after she graduates and help chronically ill people. But the problem with private practice is that she would be responsible for her own health insurance and she isn’t sure how that would work out.
“We grow up being told we can be anything we want but the reality is, especially with a chronic illness, you can’t be anything you want,” Heather said.
She worries that she’ll have to sacrifice her passion in order to find a job that will afford her health insurance. She worries that she won’t be approved for disability benefits for another year or that won’t be well enough to practice at all. And she doesn’t know how she’s going to balance her professional ambitions, her illnesses, and her need for healthcare.
“You’re already so sick...and it’s completely exhausting to, on top of that, worry about how you’re going to pay to stay alive.”
