By Lidia Schapira, MD, FASCO
Cancer.Net Editor in Chief
Originally published on Cancer.Net's From the Editor's Desk blog
Lily* is an amazing mother of two who immigrated to the United States from Nigeria more than 20 years ago. Yesterday I listened as Lily described the chain of events that followed her diagnosis of breast cancer last fall. Days after her diagnosis, she was unable to go to work and lost her job as a nursing assistant. Her friends and members of her church and community generously gave her money to cover family expenses. This allowed her to pay the bills for food and basic services. She accepted this support with gratitude and also applied for disability, but she was denied. She wrote to her senator and hired a lawyer. Unfortunately, she was told there was not enough evidence of financial hardship to qualify for assistance. Lily is grateful for the support from her community but also is eager to move on and regain her financial independence. For this proud woman, depending on others for financial support is uncomfortable and, hopefully, temporary.
As a clinical oncologist I know that it is essential to talk to patients about their worries. I need to create a safe space for them to talk about what’s keeping them up at night. Over the years I’ve become more comfortable asking direct questions about love, life, death, sex… and money. Financial hardship has always accompanied illness for those with limited resources. A cancer diagnosis can all too often lead to unemployment. This threatens the economic stability and safety of entire families.
You may have heard of “financial toxicity.” Oncologists and health economists use that expression to describe the harmful effects inflicted by medical expenses and the impact of illness. Lily had no choice. She had to move forward with chemotherapy, surgery, and radiation therapy in the hope of curing her cancer. Others face the painful dilemma of having to choose between financially supporting their families or spending limited money on a cancer treatment that isn’t guaranteed to work.
“Before I send in the prescription for this new treatment, let’s make sure you can afford it.” This is something I say in all of my consultations. The prices for new drugs are shocking and have made providing care more complex. When I describe treatment options for patients, I talk directly about the costs. I know from experience that some patients may simply not be able to pay for some treatments. Patients who are on fixed incomes may not be able to afford the monthly co-pays for new medications, which are often in the thousands of dollars per month.
In my collaborative practice, we have added an extra step to the process of choosing a treatment. The patient or a member of her family first needs to contact the insurance company to find out how much is covered. If all is well, we move on. If we see a financial hurdle, a member of our team will work with the patient to look for a better price or way of obtaining financial assistance. If we cannot find a way to make it work, we meet again and find a different treatment that is affordable and effective. We do everything we can to avoid adding financial stress to the suffering of illness. We have realized that “quality of life” means that we need to minimize the harm caused by toxic cancer treatments and by excessive financial strain.
*Name and identifying details changed.