Identifying and Destigmatizing Financial Toxicity
– Study shows all the interconnected domains that make up broader spectrum of financial distress
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As oncology professionals, we are adept in counseling patients about the potential side effects, risks, and overall toxicity of the cancer therapy that patients are about to embark on. However, many practitioners do not routinely spend enough time early on discussing the potential presence and effects of financial toxicity. Indeed, this is a topic that is not only ignored but also stigmatized in our society, to the point that some patients even feel embarrassed to bring it up with their doctors.
Patients in need of financial assistance and resources often are already overwhelmed, vulnerable, and scared from their cancer diagnosis, facing the additional burden of economic strains from escalating direct and indirect costs. It is essential, therefore, to identify and destigmatize financial toxicity not only with empathy and compassion, but also with increased awareness through investigational studies like the one published in a recent issue of .
Leonard et al. represented a multidisciplinary group spanning many countries and continents seeking to classify the economic and psychological impacts or disparities faced by genitourinary (GU) cancer survivors, hypothesizing that they faced higher rates of financial distress and mental health challenges as compared with the general population.
Dividing financial hardship into the domains of material, psychological, and behavioral in a retrospective evaluation of 2008-2018 CDC National Health Interview Survey data, representing cross-sectional household surveys of adults in the U.S., the group extracted responses and made correlations between cancer history, financial hardship, and various clinical factors for patients with prostate cancer, kidney cancer, or bladder cancer.
The six financial distress domains that were analyzed included:
- Delayed care
- Forgo care
- Cannot afford mental health
- Worried about medical bills
- Delay in dental care
- Cannot afford prescription medication
Interestingly, 25% and 4.7% of younger bladder cancer and kidney cancer survivors, respectively, reported affordability issues as compared with 2.7% of the control population. This same population had higher rates of avoidance of dental care.
Surprisingly, a higher proportion of the elderly control population (16%) and young control population (17.5%) had difficulty affording prescriptions than bladder cancer survivors in either age group (0.7% and 1.7%, respectively).
Moreover, prostate cancer survivors were found to have lower financial distress in every domain as compared with the control population as a whole in either age group. Despite these seemingly paradoxical findings, this study wholly identified significant gaps pertaining mostly to affordability issues, mental health access, and dental health access in GU cancer survivors.
There were, however, numerous limitations of this analysis including:
- That it was a retrospective review
- Reliance on self-reported patient surveys including potential survivor bias
- Data came only from the U.S. and likely with some geographic variations/bias
- Analysis of only a small subset of cancers within the GU oncology domain
- Lack of outcome data and clinical metrics
- Lack of data regarding patient income and socioeconomic status
- No prospective intervention such as the impact of active financial toxicity navigation
- Low sample sizes for bladder cancer, thus confounding the results above that are skewed towards this group
- Lack of knowledge of comorbidities and medication regimens of the control population
In addition, the study was conducted pre-COVID, although it would be interesting to see the impacts of financial hardship both during and after the pandemic.
Nevertheless, this was a well-conducted study that highlighted major disparities in mental health services, care avoidance, and affordability issues, especially for young bladder and kidney cancer survivors. Moreover, it addressed an important but grossly under-reported and under-appreciated issue in cancer care, providing meaningful methods and data extrapolation for future hypothesis generation and investigation of financial toxicity in all cancer patients.
I applaud the authors in particular for making thoughtful but discerning observations between the interconnected material, psychological, and behavioral domains that comprise the broader spectrum of "financial distress" that go beyond just the toxicity of treatment-related costs.
After all, financial toxicity is common, affecting at least 1 in 12 adults in the U.S., with at least 3 million Americans owing more than $10,000 in medical debt. The tangible costs of financial toxicity result in a vicious cycle, creating additional strain and mental health issues on top of the existing burden of emotions from a cancer diagnosis, thereby evolving into the more insidious entity known as financial distress.
Unfortunately, even given the option of funding resources and proactive care teams, many patients and their families accept financial toxicity and its surrounding stigma as the norm, not realizing that deciding between health and having a roof over their heads or food on the table should not be a given. To compensate, 70% of these patients cut spending on essentials including food and clothing, 60% use up their savings or retirement, 40% take on extra jobs, 37% borrow money from friends/family, 33% increase credit card usage, and 20% change living situations.
Indeed, many patients risk bankruptcy, foreclosure, and homelessness, while facing perpetual and progressive debt over time compounded by unfavorable loans, accumulating credit card interest, and paycheck advances.
Such poor financial alternatives can create a generational cycle that is hard to contain, leading to broken families, ruined careers, and lost opportunities. As a result, such individuals burdened with debt are more likely to delay care, skip appointments, or get lost to follow-up.
Ultimately, more studies like this one are needed to address the specific financial challenges and nuances faced in every cancer subtype and population, both domestically and internationally. We must empower all people to have a chance to regain their physical, mental, and financial health during the treatment journey and subsequent survivorship period, by fixing gaps in care and health-related costs.
This starts with openly approaching the stressors involved in both treatment and non-treatment related costs of a cancer diagnosis with our patients, consistent with recommendations provided by a recent ASCO guidance statement on this topic.
It also involves informing patients of their rights, including the right to review bills in an accurate and timely manner, to negotiate lower prices, seek fair repayment plans, prioritize and consolidate debt, and receive unbiased help through financial counselors and resources.
Lastly, at the legislative level, we must advocate for insurance reforms and policies that address the financial challenges and burdens involved in obtaining equitable, easy-to-access cancer care, including those associated with mental health.
By addressing financial toxicity and distress through advocacy of financial resources and mental health programs for cancer patients, we can help greatly improve treatment compliance and outcomes.
Ultimately, we must continue to identify and address financial toxicity, distress, and insecurity early on (and as frequently as necessary) with empathy, respect, and dignity.
, is a physician-scientist, educator, author, and speaker, who is involved with cancer care, personalized medicine, and innovation in healthcare. At Palomar Health Medical Group in San Diego, he is the Director of Oncology. He also serves as Alumni Specialty Director at the Cleveland Clinic Lerner College of Medicine and as Clinical Instructor at the University of California San Diego. You can also find him on and .
Read the study here and an interview about it here.
Primary Source
JCO Oncology Practice
Source Reference: