Our twin sons Mark and Eric were born three months premature. Mark weighed just 2 pounds, 15 ounces at birth. Eric was even smaller at 1 pound, 14 ounces. As a result, both developed a severe form of cerebral palsy undergoing more than 50 surgeries and procedures in their combined lifetimes.
Because of the twins’ diagnosis, our family required a complex stockpile of medical devices to ensure they could live active and meaningful lives. They used feeding tubes to eat, wheelchairs for mobility, special air mattresses to prevent bed sores, as well as an array of respiratory equipment — from CPAP machines to trach vents to continuous oxygen. We even installed an elaborate lift system to assist them with getting in and out of their beds and showers. Our house looked like the intensive care unit at a hospital.
The financial cost of this medical equipment was staggering. We depended on the boys’ Medicaid coverage to help pay for it. Mercifully, our sons qualified for a special Medicaid waiver program that allowed them to live at home with us rather than in a hospital. But even that program had its limits. As patients age, their qualifications change — leaving families with a lack of support and struggling to access essential care. Simply put, our nation’s coverage system isn’t ensuring Americans have access to the innovative medical care they need to live meaningful lives.
Innovative medical technology is what allowed our sons not only to survive, but thrive and become outstanding, contributing members of their community. Access to medical breakthroughs and innovative care positively impacts not just the patients themselves, but also their families and the communities they dedicate their lives to. But medical innovations are meaningless if patients aren’t able to afford or access the treatment options. And oftentimes it’s the most vulnerable patients who face the highest hurdles to access care. That is why we need coverage policies that keep pace with innovation.
In 2018, I was diagnosed with glioblastoma, a brain cancer for which at the time of my diagnosis the average length of survival was just 13 months. At that time, I was faced with the prospect of navigating our complex health care system to secure coverage for an innovative medical device that disrupts the growth of cancer cells and helps to slow the progression of this deadly disease.
While our private insurance ended up covering the device, other glioblastoma patients on Medicare have at times struggled to gain coverage for the use of this groundbreaking treatment. Work is now underway to expand this device’s use to treat other forms of cancer. But even if the expanded device applications are eventually approved by the Food and Drug Administration (FDA) for those cancers, it’s not clear whether patients will ever be covered under the existing Medicare rules.
When it comes to coverage, there can be up to an 8-year time gap between when the FDA has approved the device and when the Centers for Medicare and Medicaid Services (CMS) approves coverage — or what I call “the valley of death.” CMS could do away with that valley by modernizing its coverage rules for innovative devices and ensuring there is an expedited pathway from FDA to Medicare approval. If they don’t, Congress should.
Through all the challenges and complexities that my sons faced, Mark and Eric’s experience taught us the importance of patience and positive thinking. Mark had a wicked sense of humor. He died from a blood clot when he was 21. Eric loved the Colorado Rockies and proposed to his high school sweetheart just three weeks before he passed away. She accepted. He was just 23. They touched so many people during their lives that more than 600 people attended each memorial service.
We used to tell the kids, “Live life fully, until you don’t.” I’m trying to live by that same mantra — to live life fully until we don’t, especially in the face of glioblastoma. We had a party in my hospital room with pizza and drinks before my brain surgery and we continue to make the most of the days we have together, however many there are.
We don’t get to choose what happens to us, but we do get to choose how we respond. Like Mark and Eric, I’m choosing to confront this life-threatening terminal diagnosis with the same energy and gratitude they did. Adversity leads to opportunity, and in this instance, cancer doesn’t know who it’s messing with.
Bruce Stahlman serves as the chief financial officer of arc Thrift Stores, a Colorado-based non-profit. Bruce lives with his wife Kelly in Littleton, Colorado and volunteered to share his story with Novocure, maker of the medical device used to treat Bruce’s glioblastoma.
