No one tells you that developing breast cancer costs a lot of money.
In mid-March 2020, the United States was hit with the Covid-19 pandemic and, for many of us, the world shut down. While we were worried about washing our hands, wiping down our grocery purchases, and avoiding a deadly virus, 32-year-old Caitlin had something else on her mind. She felt a lump in her left breast.
Caitlin planned to discuss this lump with her gynecologist at her annual visit in May. But that visit was canceled due to the pandemic, and Caitlin – and the rest of the world – was swept up in following the rising Covid numbers, learning to work from home, and navigating a new normal.
Caitlin hoped the lump would go away. It didn’t. She was eventually seen for her routine GYN visit in October of 2020. Her gynecologist felt the lump, ordered a mammogram and ultrasound for the next day, and Caitlin was then immediately scheduled for a biopsy. “By that point, I knew I had breast cancer,” she recalls. Unfortunately, she was correct.
Woman learns she has breast cancer.
Caitlin has a graduate degree, a steady job earning more than $60k/year, health insurance, and no children. In theory, she should have been in a solid position to withstand the financial burden of developing a serious health condition, like breast cancer. But, in addition to the physical, emotional, and psychological trauma of being diagnosed with a life-threatening disease at a young age, Caitlin quickly started to experience the financial toxicity that too often accompanies such a diagnosis.
First, Caitlin learned that finding the lump in her breast meant she needed a ‘diagnostic mammogram.’ Yearly screening mammograms are covered in full under her insurance plan beginning at age 40, but diagnostic mammograms are not. Read that sentence again. Health insurance companies are required by the Affordable Care Act to cover yearly screening mammograms for healthy women. But if a lump is found in your breast and you need a diagnostic mammogram to determine if that lump looks cancerous, your insurance does not need to cover it in full. And many don’t. Price tag for her diagnostic mammogram and ultrasound? $2,113.
Next, Caitlin needed a biopsy. The biopsy confirmed that Caitlin had invasive breast cancer, with two positive lymph nodes. Caitlin would need a lumpectomy, 8 rounds of chemotherapy, and 33 rounds of radiation.
Imagine the trauma of learning that you have breast cancer, it has spread to your lymph nodes, and the next year of your life will involve removing part of your breast and enduring chemotherapy, losing your hair, early and potentially permanent menopause and loss of fertility, and then radiation five days a week to save your life. Imagine having to share this information with your family and loved ones and seeing the fear in their eyes. Now, on top of all that, imagine that this diagnosis could bankrupt you.
Caitlin needed to see a team of physicians and healthcare providers, including an oncologist, a radiation oncologist, and a surgeon. At her first appointment, Caitlin sat in one exam room while the providers came in, one after another. She was charged a SEPARATE $40 copay for each provider – never even having left the room.
For reference, Caitlin’s in-network deductible was $1,300. Her in-network out-of-pocket maximum was $5,250. In short, she was responsible for $6,550 before her insurance fully covered her expenses in 2020. And then, on January 1, 2021, the calendar reset, and she had to hit her deductible and out-of-pocket max all over again before her insurance would cover her expenses. Of course, insurance couldn’t cover the indirect costs of breast cancer, like parking at the medical center, which cost her $20 every time she stayed more than 7 hours, which often happened on chemo days.
Even with health insurance, the copays Caitlin faced were jaw-dropping. Lumpectomy copay= $500. Each round of chemotherapy, copay = $500. The total cost of her care in 2021 topped $334,000. Caitlin paid a small fraction of that because she had health insurance, but that small fraction was greater than 15% of her net income. Not only did she endure all of these costs, but she was forced to postpone contributing to her savings, retirement, and goal of buying a home.
Caitlin is one of the lucky ones, and she knows it. She has full-time employment, loving family and friends who supported her, health insurance, and the ability to advocate for herself. Her cancer center provided her with a social worker to help her navigate finances, but it was Caitlin herself who discovered that she qualified for a special financial aid program at her hospital that would discount her expenses by 35%. She researched local and national assistance programs and applied for grants that helped cover copays, rent payments, and even pet food. Many patients do not realize they may qualify for additional programs and/or may not be able to navigate identifying and applying for such support.
When a person develops cancer, all of the potential side effects of every therapy is outlined for them in great detail – anemia, fatigue, edema, nausea, vomiting, and the list goes on. But one side effect is rarely, if ever, discussed, even though it’s common and known to impact a patient’s wellbeing and potentially their survival. That side effect is financial toxicity, and it isn’t limited to cancer patients.
Clinical researchers are now delving into financial toxicity. The Emotional Well-being and Economic Burden Research Network (EMOT-ECON) aims to advance research and generate new knowledge about the impact of economic burden of disease on emotional well-being. Patients, caregivers, researchers, and healthcare providers are all welcome to join this initiative to further research on the impact financial toxicity has on the patient and the medical ecosystem. Financial toxicity is a side effect that is common, underdiagnosed and rarely, if ever, treated. That must change.
Resources for breast cancer patients experiencing financial difficulties: https://pinkaid.org/pink-aid-pink-purse/
Thepinkfund.org