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November 06, 2023
4 min read
My introduction to financial toxicity came before I even knew what the term meant.
My grandmother was diagnosed with congestive heart failure and chronic obstructive pulmonary disease when I was in high school. By my college graduation, she was on oxygen and in and out of the hospital every couple of months.
As the hospital visits increased, we realized that her care needs required extended time at a skilled nursing facility. The average cost of a nursing home in our area is more than $150,000 annually and we soon realized that it was not covered by Medicare.
To get Medicaid in New Jersey, my grandmother’s assets needed to be less than $4,000. My mother carefully read the fine lines of the Medicaid spend down policy and understood the transfer penalties; she cashed out her life insurance, moved money into appropriate family members’ accounts, and bought easily returnable items to show we were spending her money.
These tactics were purposeful; the capital that my grandmother had built in a lifetime was meant to contribute to the future stability of her family as generational wealth or at least to help make my grandmother’s twilight years more comfortable. It was at risk for being exhausted by a single year of bad health, leaving my grandmother destitute in her old age.
Thankfully, my mother was by her side through all of this, helping her preserve some of her life savings and, thus, her quality of life as she got sicker, but what happens to those who don’t have this level of support to rely on? Do they lose everything?
I have focused on this question in my adult life, first as a clinical trial coordinator at Memorial Sloan Kettering Cancer Center and now as a medical student researcher.
Defining financial toxicity
Financial toxicity is defined as the problems that a patient has related to the cost of their care. This includes not only the material consequences but also the psychological effects.
I know from personal experience that financial toxicity is not limited to patients with cancer, but my focus has been on the cancer community as these patients are at high risk due to the length and cost of treatments.
Financial toxicity can have a profound impact on outcomes and quality of life. Some vulnerable patients will forgo or delay treatment, or cut back on essential needs like food or rent. The cost of care can deplete savings or cause some vulnerable American families to go into debt to care for themselves or their loved ones — essentially mortgaging their futures to pay for today.
Recent clinical and technological advances have resulted in increased life span for patients. However, each new cancer drug is more costly than the one prior, and better survival means that patients will remain on these expensive treatments for longer periods of time. Unfortunately, despite rising costs, insurance coverage hasn’t commensurately improved to accommodate these costs. More and more costs are being pushed onto patients via rising copayments, coinsurance obligations and sky-high deductibles.
Outside of direct costs of cancer care, the indirect costs — including lost income, out-of-pocket expenses from travel, lodging and parking fees — is also a growing burden. Certain treatments may only be offered at specialized centers concentrated in urban areas; those in more rural areas will need to travel more to receive appropriate care. Working-age patients may lose their income while undergoing treatment; for those with limited sick leave, this can especially increase financial strain.
Marginalized communities
While financial toxicity can affect anyone, members of marginalized communities are more frequently and severely impacted.
Many of these patients are of low socioeconomic status and lack financial reserves to cover expenses or time away from work. They may also be uninsured or underinsured — their health insurance is inadequate, leaving them with high out-of-pocket expenses relative to their income. Although financial assistance programs exist to help those in need, lack of education and health literacy can make these resources difficult to navigate.
My grandmother was able to obtain Medicaid coverage because my mother figured out the steps we needed to take. This would have been impossible for her to do on her own as a woman with limited health literacy and no high school diploma.
Since many of the negative impacts on patients with cancer are financial, it is natural to think that income and savings could be the great equalizer. However, that is not the case. This past summer, I worked on research addressing the role savings plays in those experiencing financial toxicity. While savings did provide some protection, it was not enough to eradicate the differences between certain populations made more vulnerable by structural racism. For example, Black and Hispanic/Latinx patients with savings were still more likely to experience financial toxicity compared with their white and non-Latinx peers. We even found these differences among those who indicated they did not have to use savings to pay for their cancer treatment.
Clearly, there are structural barriers that have made it possible for these differences to persist. These barriers are systemic and institutionalized policies and practices that promote various disparities in society that trickle down to the health care system.
Solutions
Efforts to address financial toxicity need to be multifaceted; prior research on cost-coping strategies and interventions have shown that solutions aren’t one size fits all.
My own research presented at ASCO Quality Care Symposium in 2021 showed Black patients are far less likely to think that cost estimations could help lessen financial burdens.
Diverse strategies are needed. National nonprofits such as Triage Cancer can help patients traverse the health care system by arming them with medical legal knowledge. Price transparency would enable patients to make more informed decisions about their care.
On a policy level, the recently passed Inflation Reduction Act will eventually cap pharmacy out-of-pocket expenses for patients with Medicare Part D.
Oncologists can also play a role in creating avenues to reduce financial toxicity.
A year ago, at the Annual Meeting for the Society of Gynecologic Oncologists, a cost analysis study presentation from one of my mentors resulted in a pharmaceutical company immediately promising to adopt a pill swapping strategy that could save patients about $168 million in excess costs per year. This is the type of research that I hope to continue doing as a budding clinician researcher.
There is still a lot to be done to help remedy financial toxicity, but thankfully there is growing evidence that solutions exist to alleviate the financial burden of cancer care and a burgeoning group of researchers who are mission driven to improve access and affordability of care.
Sources/Disclosures
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Kenya Braxton is a second-year medical student at Rutgers Robert Wood Johnson Medical School. She can be reached at kfb59@rwjms.rutgers.edu or on X (formerly known as Twitter) @_kenyanator. She wrote this blog post under the guidance of her mentor, Fumiko Chino, MD, radiation oncologist at Memorial Sloan Kettering Cancer Center.
Disclosures:
Braxton and Chino report no relevant financial disclosures.
Women in Oncology
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