fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

The Care Piece

He was in his younger middle years, generally well. Before he had a wife and kids, he had been a competitive cyclist, an Olympic hopeful. He stayed active, ate thoughtfully, took no medications. But in the mornings, first his hands and within months other joints would swell and ache terribly, refusing to move. His primary doc sent him to a rheumatologist because, based on his symptoms, it appeared that an inflammatory process was to blame. The rheumatologist ran tests and then more tests; all were negative, but she agreed–this was rheumatoid arthritis.

He was started on a medication that made him feel better. Not fully better, but generally able to get up and move in the mornings without significant pain, which he certainly preferred, and his life went on.

Then he decided to leave his job to become a contractor–independent, self-reliant. Suddenly, health-care coverage for him and his family was distinctly unaffordable. In shock and disgust, he called the insurance adjusters, and they explained that despite his old-school, relatively inexpensive treatment, having rheumatic disease meant that he might be recommended for a new “biologic” treatment and thus was in the same insurance bracket as those who have cancer. The adjusters assumed that caring for him would eventually be expensive, and they expected him to pay for that possibility.

His solution was to find a new job with a large company that offered health coverage, so his disease and its costs would be subsumed within the large pool of covered individuals. He was lucky to find such a job. He was lucky, too, had that not worked out, that during those months the Affordable Care Act came into being, allowing patients like him to buy solo coverage without having to pay more because of a given disease. The exclusion of preexisting conditions and the “individual mandate”–the requirement that even those of us who are well be insured–made him again just another citizen, working hard to raise his family and take care of himself. 

This was not my patient but my brother. He could have been anyone’s brother, anyone needing medical attention. In his case, access to good nutrition and fitness, a living wage, a positive environment–all of that was not enough to protect him. Without affordable access to coverage, any one of us can become a victim of a system not currently aligned to offer care.

It seems this is the piece we need to put back in.

Sarah Buttrey
Austin, Texas

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