Katie Beckett fits herself with a vibrating vest that helps clear mucous from her lungs. A nurse comes over to her apartment in Cedar Rapids to help her do this twice a day. On the wall to the right are pictures of Katie as a child with Ronald Reagan. This story starts twenty-nine years ago with an angry President Ronald Reagan. <> We just recently received word of a little girl who has spent most of her life in a hospital. <> The little girl in the hospital was three-year-old Katie Beckett. Because of a brain infection, she needed to be hooked to a ventilator at night to breathe. Her parents wanted her home. Her doctors said she'd be better off at home. And it'd be cheaper, too: Just one-sixth the cost.
Credit John Poole / NPR
A few years ago, I asked a 13-year-old girl who was receiving care for cystic fibrosis on a Medicaid program known as the "Katie Beckett waiver" if she knew who Katie Beckett was. "Probably some kind of doctor," the girl said.
It was a logical guess. But Beckett was another child with a significant disability, and she changed health care policy for hundreds of thousands of other children with complex medical needs. On Friday, Beckett, at age 34, died in Cedar Rapids, Iowa, of complications from her disability.
It turns out we may not know nearly as much about all the money spent on health care in the U.S. as we thought we did.
But there's a new group that wants to, well, remedy that.
The problem, Martin Gaynor, chairman of the Health Care Cost Institute, told Shots, is that "two-thirds of the population has private [health] insurance, but most of the information comes from Medicare."
In 2008, Kimberly Fague was diagnosed with organ failure. Plagued by nausea, she lost a third of her body weight. She suffered from confusion and constant fatigue. Her liver and surrounding organs swelled to the point that she developed a hernia.
To get a feeling for what being sick in America is really like, and to help us understand the findings of our poll with the Robert Wood Johnson Foundation and the Harvard School of Public Health, NPR did a call-out on Facebook. We asked people to share their experiences of the health care system, and within 24 hours, we were flooded with close to 1,000 responses.
In the lull between the Supreme Court arguments over the federal health overhaul law and the decision expected in June, we thought we'd ask Americans who actually use the health system quite a bit how they view the quality of care and its cost.
Most surveys don't break it down this way.
When the results came back, we found that people who have a serious medical condition or who've been in the hospital in the past year tended to have more concerns about costs and quality than people who aren't sick. No big surprise there.