When Insurance Coverage Dictates Cancer Therapy

Financial distress or financial toxicity is a term used to describe the financial problems experienced by cancer patients because of the out of pocket expenses not covered by health insurance. These costs include copayments, deductibles and coinsurance. The National Cancer Insitute cites that some cancer survivors spend more than twenty percent of their annual income on their healthcare costs.¹

The financial impact of a diagnosis

The financial impact of a cancer diagnosis may continue during treatment and for years after due to late effects of treatment. Several studies indicate that cancer patients may experience the loss of a job, difficulty returning to work, earning a reduced income, and a general loss of productivity. Due to my debilitating chemotherapy fatigue, I was required to take a leave of absence which affected my income. Even when returning to work, I considered an earlier than planned retirement, as my ability to fulfill the required evening commitment was affected. I was still exhausted.

Because of cost, some patients have reported skipping doses or taking less than the prescribed chemotherapy medication.¹

The cost of cancer care was a major concern when I planned for my retirement. My employer-sponsored medical coverage upon retirement was not very comprehensive. I explored all available options and selected a costly out of pocket plan that provided the best coverage.

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New treatment, big price tag

Unfortunately, while progress is being made in treatment options for blood cancer, the financial costs can be staggering. A promising therapy for blood cancer patients who failed prior chemotherapy may not be available to patients because of the excessive cost. Known as CAR T-cell therapy, it involves collecting a patient’s own T cells, a type of white blood cell, genetically modifying them and then infusing them back into the patient. These changed cells then find and kill the cancer cells.²

Kymriah has been FDA approved for patients with acute lymphocytic leukemia up to the age of 25 years. Both Kymriah and Yescarta are approved for adults with certain forms of non-Hodgkin lymphoma. However, these drugs are extremely expensive. $475 thousand for Kymriah and almost $375 thousand for Yescarta.³

Some commercial insurance companies are covering CAR-T cell therapy on an individual case by case basis. The process for approval can be delayed and frustrating to both patients and physicians.³3

This is an ethical dilemma. How can blood cancer patients safely receive cutting-edge treatment?

The results of clinical trials have demonstrated the effectiveness of CAR-T therapy, yet not all eligible patients are being provided insurance coverage. What can be done? Can our medical associations lobby for fair insurance coverage? Can we as blood cancer survivors advocate and contact our government officials? I plan to speak up and lobby when possible to advocate for reasonable cost and healthcare coverage.