“When our second child, Zade, arrived in 2004, my wife and I thought we knew most of the hazards facing babies,” Doug Hirsch writes over at Stat News. “Until the night in the fast food restaurant when Zade died. At least that’s what it seemed like. I had taken him to the bathroom to change his diaper and he suddenly went limp, didn’t respond to me, and started turning blue. It was maybe 30 seconds…. I can still feel the panic that engulfed me as I ran out of the bathroom screaming…. An ambulance arrived and whisked my wife and son to the hospital. … As we later learned, our son had experienced a febrile seizure. These are fairly common: 2 to 5 percent of babies experience them. Most kids eventually stop having seizures and live totally normal lives. That’s exactly what happened to Zade. The $16,000 ambulance ride, mostly covered by insurance, was followed by a few hours in the emergency department. … Zade had a few more seizures. Then they stopped. The terrible part of this story wouldn’t happen for another few years. In 2009, I switched jobs and needed to buy health insurance for my family. This was before the Affordable Care Act had been passed, and I was required to provide dozens of pages of personal medical questions. Then followed humiliating discussions with a nurse from my new insurance company who asked about every single issue my family had ever experienced. He wanted to know when my birthmarks had started — I’m not kidding — and demanded letters, doctors notes, and intimate details about any time we had ever seen a doctor or taken a medication…. I told the nurse about Zade’s febrile seizures, my family history of high cholesterol, and even my struggles with depression. I knew that disclosing this information could potentially increase our premium, but if that’s what it took to get health insurance for my family, so be it. Two weeks later, I received my insurance cards and a bill. I first noticed that I was now paying twice as much for our insurance as I had been. Then I noticed that the envelope held only three insurance cards; there wasn’t one for Zade. This insurance company, and five more after that, decided that my son might cost them too much money because of those seizures, which they called a pre-existing condition. So they simply rejected him from coverage.” Doug Hirsch, “A past pre-existing condition shouldn’t mean my son is denied insurance,” Stat News
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.
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.
Her TED talk about fixing health costs has surpassed 2 million views.