For four months, my husband, Brad, had been recovering from a stem-cell transplant that saved his life from aggressive lymphoma. The hospital administration said he must go home, but he needed a level of support that, I thought, only a hospital could provide.
I became painfully familiar with caregiving’s challenges during Brad’s months of chemo in 2015, but it was his 2016 stem-cell transplant — a last-ditch treatment for relapsed cancer — that showed me just how broken our system is. When he was discharged, he was immunocompromised, blind, too weak to walk unassisted, and unable to eat more than half his calories.
“He’ll need attendance 24 hours a day,” his oncologist told me. I stared, panic rising.
Our family had been extremely supportive but couldn’t drop everything indefinitely. A nurse suggested organizing shifts of friends, but my friends, like me, were working parents.
Besides, caring for Brad wasn’t simply watching him. He came home with 35 medications that had to be administered on a mind-boggling schedule, as well intravenous nutrition that I had to hook up, a complex procedure that I learned to perform in a hasty training session from a nurse. He needed blood sugar tests and assistance with toileting, showering and other intimate acts at which even close friends might well balk.
Insurance does not cover home attendants even when medically necessary. Our benefits did pay for skilled nursing visits and home health aides for assistance with showering twice a week, but for the 24-hour care the doctor prescribed, we had to pay out of pocket. The summer after Brad came home, we spent more than $21,000 on in-home care, dipping into savings and an inheritance from my mother to do so. We were very fortunate to have those resources; for many families, it would be out of reach.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....