A plea for equity in Medicaid coverage of innovative treatment for glioblastoma

My sister-in-law Lana was diagnosed with glioblastoma in 1992. Following surgery and radiation, her tumor returned, and doctors gave her just a few months to live. We found an "off label" treatment that actually worked, keeping her alive for another five years. But when her insurance hit its lifetime maximum, the company stopped paying for the drug. She couldn’t afford the medicine, so she stopped taking it. The tumor quickly recurred, and she passed away.

In 1999, my father was diagnosed with the same devastating brain cancer. He initially decided not to pursue a costly treatment because the high copays would impoverish my mother. When my sisters and I found out, we quickly decided to finance the treatments. But the delay gave the tumor a head start, and he died four months later.

Every day, families like mine are forced to weigh the financial costs of medical care against the negative outcomes of a devastating diagnosis. In states like New York, treatment options for some lower-income cancer patients on Medicaid are being severely restricted due to coverage roadblocks.

Medicaid fee-for-service patients in New York are currently being denied access to a revolutionary cancer treatment from Novocure known as Tumor Treating (TT) fields therapy. This therapy is recognized in National Comprehensive Cancer Network guidelines as a standard care for glioblastoma and is accessible to Medicare patients and the vast majority of private insurance carriers. Yet, the New York State Department of Health continues to deny access to patients who receive fee-for-service care on Medicaid.

TT fields therapy is a noninvasive technology that targets cancer cells without harming surrounding tissues. One study revealed that patients using TT fields at a high compliance level (more than 90%), in combination with standard chemotherapy, had a five-year survival rate of 29% compared to less than 5% with the standard treatments. However, Medicaid fee-for-service patients in New York are unable to access this innovative care. Patients shouldn’t be denied coverage simply because of their socioeconomic status.

Many patients living with cancer find it difficult to maintain health insurance coverage through an employer. The Journal of Neurosurgery notes that only 18% of glioblastoma patients were able to return to work and of those patients, more than 61% could only work on a part-time basis following diagnosis. Additionally, the National Institutes of Health estimates that 80% to 90% of individuals diagnosed with glioblastoma have difficulty returning to work altogether.

As a result of their diagnosis and the inability to work full-time, patients can be forced onto Medicaid, which does not comprehensively cover one of the most innovative cancer treatments on the market.

Imagine using a therapy that is helping you, and then having to stop it because you no longer have comprehensive health care coverage under Medicaid. It is unjust that the socioeconomic status of glioblastoma patients dictates their access to proven treatments. We must advocate for equitable health coverage in New York, especially for our most vulnerable populations.

The state Department of Health should update its Medicaid policies to include TT fields coverage for patients receiving fee-for-service care. This isn't just about health care; it's about fairness, dignity, and life itself. Let's ensure that no patient is denied the right to fight cancer effectively due to an economic disadvantage.

This guest essay reflects the views of Al Musella, a retired podiatrist from Hewlett, who is founder and president of the Musella Foundation For Brain Tumor Research & Information, Inc, a 501(c)(3) nonprofit public charity devoted to empowering brain tumor patients and their families. The Musella Foundation is a recipient of funding from Novocure.