Updated: Oct 5, 2020
The last few months have seen many discussions about health care, financial burden, and the intersection between the two. The COVID-19 pandemic has left many Americans out of work and without health insurance at a time when health concerns are critical. This problem is of even greater concern among cancer patients, who are often already participating in expensive treatment that they may not be able to postpone.
Cost of care is often spoken about in a somewhat abstract way, as in, “health care costs are too high.” But what does that actually mean to the individual cancer patient? What are the real-world impacts of expensive treatment? Cancer Support Community’s (CSC) Cancer Experience Registry©, an online survey for cancer patients and caregivers, aims to understand the thoughts and experiences of those impacted by cancer in their everyday lives. Results have shown that 1 out of 3 cancer patients reported having depleted their savings or used money from retirement to cover the cost of their treatment. Savings are a safety net, so watching them dwindle can be an added strain on families who may already be struggling. The impact of expensive health care proves to be more insidious as 1 out of 10 cancer patients report having postponed filling their prescriptions due to concerns about cost. This can have an adverse effect on the well-being of someone diagnosed with cancer.
One chronic myeloid leukemia patient, Diane, described the cost of her treatment as the most frustrating aspect of her cancer diagnosis. She expressed to CSC, “When I was diagnosed with leukemia, I did not cry. But when I was told how much the medicine was going to cost; that’s when I cried.” Diane thought she would die because she couldn’t afford her health care costs. This leads us to our next question: what can you do if you or a loved one is struggling with the financial burden of cancer? To start, you can talk to your doctor. Hospitals often have financial advocacy services or know of other financial resources for patients undergoing treatment. Seven out of 10 participants in the Cancer Experience Registry© reported that their health care team did not speak to them regarding the cost of care. This is a problem that CSC is seeking to address through patient outreach programs, advocacy, and through our telephone helpline, but in the meantime, never be afraid to share financial concerns with your doctor. Your health care team is invested in your overall health, and may be aware of resources that you can contact for financial planning, or even sponsorship.
While the affordability of health care in the United States is a key public concern, there are many organizations dedicated to helping cancer patients access affordable healthcare. When Diane believed there was no hope for her, she discovered CSC, which not only provided her with social support and information about her illness, but also connected her with another organization so that she could cover the copay for her cancer treatment. With the support of these organizations, Diane was able to continue her treatment with fewer obstacles. At CSC, we seek to understand the day-to-day, personal impacts of complex issues like living with cancer and health care financial toxicity. Our research findings help us develop advocacy positions, patient programs, and community services to address unmet needs. The data we receive from research studies such as the Cancer Experience Registry© allow us to understand more about the cancer experience, and about relevant topics such as financial burden and quality of life. To help us learn more about your specific experiences living with cancer, fill out the Cancer Experience Registry© here today! To learn more about the insights we’ve received so far, check out the brand new 2020 Cancer Experience Registry Report here.