The night in July 2020 when my husband, Ira, was diagnosed with a brain tumor, he told me he was confident he was going to do his best to beat this disease. The doctor had told him that he had a year, maybe 18 months, to live. But Ira reminded me that he had just met the doctor and that those averages don’t apply to individual people.
So far, he’s been right.
My husband is one of 700,000 Americans living with a brain tumor. We made a commitment the night of his diagnosis to do everything in our power to beat the odds. We have benefited from expert medical care, daily exercise and a willingness to explore the best possible treatments for Ira. I make most of our meals from scratch and prepare a very clean plant-based, nutrient-dense diet. Travel also helps.
There have been plenty of hurdles along the way – finding the right doctors, surgery to remove the tumor and, of course, radiation and chemotherapy. One of the disappointing moments in our journey came when Medicare challenged Ira’s use of Optune, a medical device approved by the Food and Drug Administration to treat glioblastoma in combination with chemotherapy.
Because Ira is using a device to treat his cancer, Medicare has restrictive coverage rules in place that don’t exist for cancer drugs. For one month, Medicare initially denied our request to cover the device because reviewers did not think Ira met all of the requirements. We addressed their concerns with the help of the company that makes the device, but our coverage scare made an already uncertain process feel even more precarious.
Medicare continues to challenge Ira’s use of this device, and from what I have read online, we are not the only ones whose claims the agency initially denied. Medicare needs to improve the way it treats innovative technology to ensure no patient experiences the fear and uncertainty we continue to go through.
We were lucky we ended up not having a gap in coverage. Most patients couldn’t afford to pay for innovative treatments before Medicare and supplementary insurance step in to cover the costs. Medicare should cover FDA-approved medical devices with the potential to increase survival rates the same way it covers drugs, without restrictive criteria that hamper access for patients.
The night of Ira’s diagnosis, I was so disoriented leaving the hospital that I had a hard time finding our car, but I started reaching out to doctors the minute I got home. We were lucky to find great specialists at the University of Colorado Anschutz Medical Campus. Ira’s gifted surgeon was able to remove the entire tumor in surgery, and his neurooncologist immediately introduced us to a cancer therapy that uses frequency-tuned electric fields to disrupt solid tumor cancer-cell division. The doctor said the machine could extend his life.
We made a personal decision very early in this process to avoid clinical trials for pharmaceutical treatments that may or may not be effective or safe— unlike this device, which is FDA-approved in adults 22 years of age or older. The only common device-related side effect was mild to moderate skin irritation.
Glioblastoma is an aggressive and rare disease, and while there are a number of treatments in various stages of clinical trials, we are grateful to have another tool to fight the cancer. We know there isn’t a quick fix, so we continue to research the best diet and treatments available. Ira wears the Optune device every day to get the best response from the treatment. If he’s not wearing a hat over it, strangers will approach us on walks or on the plane to ask what it is. These conversations are a good chance to educate people about glioblastoma.
Beyond the obvious disruptions resulting from Ira’s treatment, we have tried not to let glioblastoma change our routines. Every patient is different, so it’s important to consult a physician about whether it’s okay to continue working, traveling or doing other activities. But we exercise daily and go on regular hikes in the Rockies and the foothills around our home near Boulder. We ski and snowshoe in the winter. Ira has chosen not to wear the Optune device while he skis, but he wears it just about everywhere else.
We are determined not to let cancer change our lives more dramatically than it should. There are plenty of things Ira and I still hope to accomplish and many trips we still plan to take. From the beginning, we decided not to let averages or others’ expectations define our experience.
We remain determined not to be another statistic. Ira is not a data point. Neither am I.
Sandy Bornstein is a travel and lifestyle writer who lives in Arvada with her husband, Ira, who volunteered to share his story with Novocure, maker of the Optune electric-field device used to treat some solid-tumor cancers.
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