Samantha Watson is the CEO of The Samfund. Michelle Landwehr is the COO of The Samfund. The Samfund is a nonprofit organization designed to help young adults recover from the financial impact of cancer treatment.
The 2016 ASCO Annual Meeting wrapped more than a month ago, but our brains are still buzzing. Our booth was at the entrance to the Patient Advocate Pavilion, which enabled us to speak with many fellow attendees. One thing we noticed nearly universally among our visitors was that heads nodded in agreement whenever we spoke about the costs of cancer and the challenges of being a young adult survivor. This year, we were gratified to see leading oncologists and academics focusing on what we’ve been trying to express for a decade: cancer care can be very expensive, and young adults often get the short end of the stick.
According to the American Cancer Society, people who experience financial burdens from their cancer treatment often had a lower health-related quality of life, were more likely to be depressed, and worried more about their cancer coming back. This is certainly nothing new. A study published in 2014 came to a similar conclusion: patients with large financial burdens often have a low quality of life.
Last year, we wrote a paper citing data collected by The Samfund from 2007–2013. Our report highlights the challenges faced by young adults who have experienced severe financial toxicity and other economic effects because of their cancer diagnosis and treatment. The young adults in our study told us story after story about how the financial burden of cancer has impacted their stress levels and mental health. One participant wrote:
“The stress from my money issues due to cancer has not only led to a diagnosis of severe anxiety and depression…but it literally causes fatigue and bone pain. I feel it has limited me in my social life, how I perform at work, my personal happiness, my relationships with others, and I truly feel like my youth has been stolen from me.
Unfortunately, these feelings are all too common.
We know anecdotally that financial burden leads people to delay medical care, skip follow-ups, and stop taking medications. And this is especially true for young adults because of their age, lack of employment history, low savings, and/or limited support from parents. One of our grant recipients wrote:
“On top of the money for prescriptions and copays each month… and other monthly expenses, it all adds up and I can't afford all of this on my current salary. I am having to put off treatments and tests because even with health insurance coverage, I simply do not have enough.”
Talk with your health care providers about costs. This is something too many young patients are too embarrassed or shocked to do. At the ASCO Annual Meeting, we spoke with Yousuf Zafar, MD, Duke University Medical Center. In his 2015 study, he found that only 19% of patients across all ages reported having discussed the cost of cancer treatment with their physician. Don’t avoid starting the conversation about costs. It may help reduce or manage these costs down the line.
Be your own best advocate. Research options, costs, side effects, etc., before you agree to a treatment. Ask about the cost of drugs and whether there are options that are less expensive but equally effective. Find out if it costs the same to receive a drug in the clinic versus at home. Talk to your insurance company so you can fully understand your coverage. Ask as many questions as you need to be comfortable.
Learn about and use patient assistance programs. Many pharmaceutical companies have co-pay assistance available, as do multiple independent organizations. Spend the time looking into them, if you can, because they may help you get your medications at reduced cost (or even free).
Find help and support. More and more tools are available every day, both online and offline. Local and national cancer advocacy groups provide a broad range of services, from lodging, to transportation, to scholarships and financial assistance for school, help paying down medical bills, or help with insurance co-pays. You can find a lot of information online and/or by asking your social worker, patient advocate, or fellow cancer survivors for advice. You can start by using the resources listed below.