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Duration:07:14
Uploaded:2019-04-29
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The US healthcare system has a huge gap. A lot of care giving isn't covered, and it falls on families and friends to pick up the slack. It can take a lot of time and help to make it through an illness, and there isn't much coverage for that assistance. We look at several patient experiences with serious illness and the toll it takes.

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Last year, one of my best friends learned he had cancer. In many respects he was lucky. He had great insurance. He had enough money. Partly because one of his friends (me) is well connected in the healthcare system, he got excellent care. So, this is not a story about how the system failed or how people need insurance or access. He had those. He got the care. This is the United States healthcare system at peak performance. And yet, I was utterly floored by how hard it all was. That's the topic of this week's Healthcare Triage.

[Intro]

American's spend so much time debating so many aspects of healthcare, including insurance and access. Almost none of that debate covers the actual impossibility and hardship faced by the many millions of friends and family members who are caregivers. It's hugely disrupting and expensive. There's no system for it. It's a gaping hole.

My friend, Jim Fleischer, missed a few days of work when his diagnosis was made, then missed many more after he had surgery. His wife, Ali, had to take time off. His mother-in-law had to come and help take care of him and the children when Ali had to go back to work (she's a teacher). Every appointment required Jim and Ali to take off work. They live in Indiana, and, at one point, they even had to pay for flights and a hotel room and everything else associated with with the trip to New York (none of it covered by insurance), because no one would do the second opinion remotely. He had a kidney removed in an initial operation, then doctors found he had a rare cancer, a neuroectodermal tumor, instead of the expected renal cell carcinoma.

Chemotherapy is rough. After each cycle, Jim would pretty much sleep or rest for a week, unable to work. Someone had to take the time to be with him. Sometimes it was Ali, sometimes it was my wife or me or other friends.

By my count, other adults missed at least 30 days of work to get Jim to his appointments. The economic loss, the many months of work, is the least of it. Not included is all the strain that's been put on Jim's relatives as they shifted to care for him while still maintaining all the obligations and commitments any family of five has to deal with.

Again, I should be clear that this is how the system works in optimal conditions for people with a lot of privilege. Jim's now in remission, although he'll need to be monitored for some time. This isn't a story of how things went wrong. And yet, on many occasions, I've wondered how Jim's family pulled it off. If it was this hard for him, it's probably unbearable for many others with fewer resources. People can be financially ruined by illness, and health insurance won't fix that.

(2:38)