What Happens When the System Fails Its Healers

In 2018 my husband was diagnosed with a rare type of cancer (olfactory neuroblastoma). His only symptom was a chronic runny/stuffy nose. His treatment plan included several weeks of radiation and a 14-hour surgery, as the tumor wrapped around his optic nerve and entered the dura (the outer cushion protecting the brain). This all happened while we were raising two young children, then five and almost two. I had to leave my job to manage his care.

When it became apparent that my husband, Sammit, would benefit from a new type of radiology called proton therapy, we pursued it. We were lucky that there was a proton therapy oncologist less than an hour away from us (when the only other one was in France). Proton therapy has fewer side effects and causes less damage than conventional radiation, and considering Sammit’s was being directed to an area that included his brain, it was an obvious choice.

We were denied by our insurance. Many people wrote letters, including the oncologist who said the treatment would not only greatly benefit my husband but would also benefit my husband’s future patients (Sammit is a physician himself). We were eventually approved, and he was able to receive proton therapy.

Before he was diagnosed, Sammit was in the process of looking for a new job closer to home. We had moved and he was still commuting 90+ minutes a day and working days, nights, and 24-hour shifts. It was too much. He found a great job at a hospital system closer to us, but because of his cancer diagnosis and the fact that the new job’s benefits wouldn’t start for a month after working, he had to work two full-time physician jobs while undergoing radiation in order to keep access to his insurance. Then, once he had access to his new job’s insurance, we had to start our very high deductible all over in the middle of the year. It was financially devastating.

We thought that, since he was a physician, in terms of both income and access we would have some kind of insulation from the, frankly, BS of the American health care system that Sammit fights against everyday for his patients… but no. It still brought so much unneeded stress and anguish to the worst time in our lives.

Everyone should be able to focus on their care and recovery when they deal with a major illness, instead of working double shifts and covering extra bills. Sammit has been cancer-free for seven years now. But we still worry about talk from Congress about bringing back high risk pools or removing bans on preexisting-condition limitations. We want to leave cancer in our past, but the desire to gut the ACA makes it a nightmare we can’t ever quite wake up from.

Dillon

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