My husband’s brain cancer diagnosis came out of the blue. He was a healthy 39-year-old man with two young children when he was diagnosed. We were in shock. We didn’t know anything about brain cancer or how to proceed through the process of care.
After a series of initial procedures, we spent roughly 10 months learning about the disease as well as the specialists, advanced treatments, and clinical trial options that were available at the time to combat it. We knew my husband Chris wouldn’t survive for long by following the standard of care at the time, so we decided to pursue alternative treatment options. At that point in time, there were no technology-based treatments for glioblastoma, but we were able to get him into a clinical trial process.
He and I truly believed the access to innovative care gave him another 10 months of quality life with his family before he passed away, and that’s a big reason why we started the Chris Elliott Fund DBA – now the EndBrainCancer Initiative (EBCI). Our goal was to help ensure that patients have immediate access to advanced treatments, new studies, and clinical trials that could extend their lives.
What we couldn’t have imagined all those years ago is the extraordinary advancement in science and technology when it comes to treating brain cancer today. Tumor Treating Fields technology, for example, was simply unthinkable at the time my family was considering care options. But while treatment options have greatly expanded, lack of access is a barrier that remains — particularly for those who do not have the financial means for basic healthcare, let alone for the advanced treatments a disease like glioblastoma requires to extend life.
In addition to the challenges patients face in accessing innovative treatments, there is a broader issue of lack of government transparency in healthcare decision-making. The Health Care Authority (HCA) in our state, responsible for covering 2.5 million Washingtonians, including Medicaid patients and public employees, has consistently denied coverage for groundbreaking medical technologies like Tumor Treating Fields. This lack of transparency raises concerns about fairness and ethical considerations in healthcare policies.
With their denials of access to these types of treatments, the HCA is picking winners and losers. HCA forces each patient into a one-size-fits-all approach — which, as I know from experience, simply does not work with a disease of this nature.
The HCA’s short-sighted ruling unfairly impacts the state’s Medicaid population, but it also impacts tens of thousands of public employees — including those who are working in our local and state government, higher education spaces, and judicial agencies.
Glioblastoma is terminal, and the options for patients with this devastating cancer are limited. Patients need as many tools in their toolbox as possible to treat this disease. When you take away one of those options because it isn’t covered, it almost serves as a second death sentence. Can you imagine the feeling of defeat when a patient is told they cannot have access to an NCCN-recommended treatment that could extend their life? We must ask ourselves: is this ethical?
A treatment that has been approved by the FDA should be accessible for patients no matter their income level, what state they live in, or who their employers are. The financial weight of health care is a heavy burden. Without proper coverage, innovative care simply isn’t accessible for most patients. These are people who are fighting for their lives, and when opportunities to extend life are taken away, it leaves them without hope.
HCA must modernize its reimbursement policies for innovative medical devices and ensure that Medicaid patients and public employees are afforded access to groundbreaking treatments that could extend their lives.
Dellann Elliott Mydland is a patient advocate whose personal experience navigating her late husband, Chris Elliott’s, brain cancer spurred them to establish the Chris Elliott Fund, now known as the EndBrainCancer Initiative (EBCI). The purpose of the initiative is to ensure patients have immediate access to advanced treatments, studies, and clinical trials. Learn more at www.EndBrainCancer.org. Dellann has worked on behalf of cancer patients, caregivers, and their families for more than 20 years. She is a regular contributor to leading brain tumor and oncology patient awareness and education publications and actively participates as a patient advocate for brain cancer clinical trials to multiple Clinical Trial Organizations (CRO’s), Drug/Device/NGS, City of Hope, California Institute for Regenerative Medicine, John Hopkins, Yale and other clinical trial sponsors, institutions and biotech and biopharma companies.
