“Gracie Van Brunt hasn’t left her house in seven months and won’t for five more,” Fortesa Latifi writes over at Teen Vogue. “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.” Fortesa Latifi, “Health Insurance After Age 26 Isn’t Guaranteed If You Have a Chronic Illness,” Teen Vogue.
Jeanne Pinder is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded ClearHealthCosts.
With Pinder at the helm, ClearHealthCosts shared honors for the top network public service journalism project in a partnership with CBS News, as well as winning numerous other journalism prizes.
She was previously a fellow at the Tow Center for Digital Journalism at the Columbia University School of Journalism. ClearHealthCosts has won grants from the Tow-Knight Center for Entrepreneurial Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York; the International Women’s Media Foundation; the John S. and James L. Knight Foundation with KQED public radio in San Francisco and KPCC in Los Angeles; the Lenfest Foundation in Philadelphia for a partnership with The Philadelphia Inquirer; and the New York State Health Foundation for a partnership with WNYC public radio/Gothamist in New York; and other honors.
She is one of Crain’s Notable Women in Tech. Niemanlab wrote of ClearHealthCosts that “The Internet hates secrets.”
Her TED talk about fixing health costs has surpassed 2 million views.