Mark Letterman’s rheumatoid arthritis had been progressing unrelentingly despite popping dozens of pills each week — eight methotrexate pills on Mondays alone. Letterman felt like he was 63 going on 93.
If rheumatoid arthritis progresses unchecked, it is as debilitating of a disease as can be imagined. Don’t think garden variety arthritis that only interferes with activities like, um, gardening. Think: finger and wrist joints so inflamed it feels like your hands have suffered a heat stroke from the inside out. Imagine: the joints of your toes so damaged you have to purchase shoes at a medical supply store, even though you will still be lucky to walk on a good day. Rheumatoid arthritis is a severe, inflammatory disorder that simultaneously deforms and disables.
Letterman — a pseudonym — and his doctor gave permission for Verilogue Inc., a marketing company, to audio-record their interaction. The clinic appointment was one of many that my colleagues and I analyzed to see what happens when doctors and patients discuss health care costs. That appointment revealed a disturbingly common problem — sometimes doctors and patients get so confused about insurance coverage, they can’t figure out how best to treat patients’ illnesses.
Letterman’s doctor was concerned about the virulence of his arthritis: “Your labs show that your CRP, that’s an inflammatory marker, is high. So it says your rheumatoid is active. Have we ever talked about [medications] beyond methotrexate?”
“We talked about once,” his wife replied. “See, he only has Medicare.” They had held off on trying more expensive medications because, with Medicare alone and no supplemental insurance plan, they would be on the hook for a significant portion of their medication costs. The rheumatologist went on to explain that they needed the “big guns,” medications like Embrel, to control his illness. “He needs to get on the Medicare Part D,” his wife said, referring to supplemental insurance to cover prescriptions. The physician agreed: “With these foundations,” he said referring to organizations that help people who cannot afford expensive drugs, “they help you for a certain time, and then you’re cut off. The problem is [the foundations only] have so much funding that they can provide, and they allocate it to everyone who applies.”
So he encouraged Letterman to receive additional insurance: “If you go on the Part D Medicare if you get secondary coverage, then you can get infusions, IV, where [insurance] would pay. I mean, it might be 80 percent of the costs.” Letterman’s wife explained that they had already shopped for such coverage: “We’ve called everywhere,” she said. “United Healthcare wasn’t interested in covering him because of his age.” The rheumatologist asked whether AARP had a plan he could use, but that wasn’t feasible either. Then Letterman, his wife, and the rheumatologist began an elaborate discussion of which drugs would be more or less expensive depending on what coverage he could get hold of. “Looks like you won’t be able to get coverage until you’re sixty-five,” the rheumatologist concluded. “So in the meantime, we can add another pill,” one not as expensive, but also not as effective.
Aaaargh!
As the country considers ways to once again reform its health care system, we have to remember that competition among insurance companies can become so confusing as to bewilder patients and physicians, thereby thwarting their ability to get affordable treatments for people with serious illnesses like rheumatoid arthritis. When it comes to consumer choice, more is not always better, especially when the products — the insurance plans — available to consumers are as inscrutable as a James Joyce novel.
We need to simplify insurance benefits so Americans can make informed choices.
Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel. He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together. This article originally appeared in Forbes.
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