Same patient, same drug, same insurer — coverage denied

From STATNews

By Tara Bannow March 2, 2023

Janice Morales-Ferrer is a planner. It’s helped her get ahead in her career and in raising three young kids. But it’s hard to plan when you’ve got a rare disease, especially one with no standard treatment regimen or predictable outcome.

“I’m a data-driven person,” said the 46-year-old Boston area resident. “It’s frustrating for me to not be able to plan how long I can live for my kids. There’s no data. You don’t know what your prognosis is. You keep going and you hope for the best.”

Morales-Ferrer has focal segmental glomerulosclerosis, a rare kidney disease that results in scarring in the parts of the kidneys that filter blood. Even with treatment, many FSGS patients eventually progress to kidney failure and need dialysis or transplants. Recurrence is common after transplants.

Until a few weeks ago, things were looking even more dire. Morales-Ferrer’s insurance company was refusing to pay for the same infusion medication, Rituxan, that it had covered during her first bout of FSGS, one that her doctor credited with sending her disease into remission for years. She wrangled with them for weeks, facing down three separate denials, one of which forced her to cancel an important infusion. Her story offers a window into the confounding, seemingly irrational world of insurance coverage, one that’s given rise to a network of billing gurus dedicated to helping patients fight denials.

“The medication is right there,” she said. “My doctor is ready to offer it to me, but they’re blocking it. It’s mind-boggling.”

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