Financial Burden Weighs on Patients With Multiple Sclerosis


Financial self-efficacy and having at least 1 relapse were identified as independent predictors of financial toxicity among patients with multiple sclerosis.

Gelareh Sadigh, MD

Data collected from the Harvey L. Neiman Health Policy Institute showed that over 75% of patients with multiple sclerosis (MS) face financial toxicity, with higher risk for patients with MS who have lower financial self-efficacy and prior relapse history.1,2

The study included a total of 243 patients with MS visiting a neurology clinic from June 2018 to February 2019 who completed a survey that used Comprehensive Score for Financial Toxicity (COST) as a way to estimate financial toxicity. The evaluation ranged from 0 to 44, with the lower the score representing the worse financial toxicity.

Study author Gelareh Sadigh, MD, assistant radiology professor at Emory University School of Medicine, and colleagues found the median COST score was 16 (range 0–44) with a mean score of 17.4 (+10.2). A total of 75.6% (n = 183) of patients reported some degree of financial toxicity on the summary item of the COST questionnaire.

Health-related quality of life (HRQOL) for global physical health, mental health, and self-efficacy domains were also recorded. Below average global physical and mental HRQOL were found in 76.8% (n = 176) and 36.2% (n = 87) of patients who participated in the survey, respectively.

“Over the last 20 years, higher out-of-pocket costs for advanced imaging tests and increased cost sharing have cause the financial burdens on MS patients to escalate. Among medically bankrupt families, MS is associated with the highest total out-of-pocket expenditures exceeding those of cancer patients,” Sadigh said in a statement. “Our study results demonstrate the high prevalence of financial toxicity in MS patients and the resulting decisions patients make that impact their health care and lifestyle."

Decreases in income after receiving an MS diagnosis were reported by 56.2% (n = 127) of patients, with 37.1% (n = 74) experiencing a decrease greater than 20% of their income. Sadigh and colleagues noted that 67% (n = 136) of patients used at least 1 financial coping strategy in response to financial burden from treatment expenses. Furthermore, 50.4% of those decreased spending on leisure activities, while 40.2% withdrew money from savings accounts and 34.8% decreased basic spending.

Univariate analysis showed that race (P = .04), employment status (P <.001), annual household income (P <.001), insurance type (P = .003), at least 1 emergency department (ED) or inpatient hospitalization in the last 3 months (P <.001), and financial self-efficacy (P <.001) were associated with financial toxicity COST score.

Factors such as age, gender, marital status, months from diagnosis, Expanded Disability Status Scale (EDSS), and Charlson morbidity index were not significantly associated with financial toxicity.

After evaluating financial toxicity and care nonadherence, 75 (34.7%) patients reported care nonadherence due to treatment expenses, with the most common being delaying filling of prescription medication (26.9%). Notably, 20.6% of patients (n = 46) reported a medical problem other than MS for which they did not seek evaluation due to MS treatment costs. The most common reasons for care nonadherence were denial of coverage by insurance (30.1%; n = 53), followed by not being able to afford the treatment or imaging (21.8%; n = 39).

In response to care nonadherence, 35% reported medication or imaging nonadherence due to treatment expenses, with 13% reporting nonreceipt of recommended imaging tests, which investigators noted have higher copayments than other health care services.

“These data underscore the need for shared decision-making and an awareness of patient financial strain when planning treatment strategies,” co-author and Neiman Institute affiliate senior research fellow, Richard Duszak, MD, FACR, professor and vice chair for health policy and practice in the department of radiology and imaging sciences at Emory University, said in a statement. “In addition to the impact on adherence, financial toxicity was associated with significantly lower physical health-related quality of life, demonstrating the broad consequences of treatment costs for many MS patients.”

The topic of health care costs in MS is of serious concern. In a previous interview with NeurologyLive for the Mind Moments podcast, Daniel Hartung, PharmD, MPH, associate professor of pharmacy, Oregon State University College of Pharmacy, discussed findings of a report he and his colleagues compiled on rising spending in the US Medicaid program on disease-modifying therapies for MS. Listen to the podcast episode below:

1. New study reveals 75% of multiple sclerosis patients face financial toxicity. News Release. Reston, VA: Harvey L. Neiman Health Policy Institute. September 8, 2020. Accessed September 9, 2020.
2. Sadigh G, Lava N, Switchenko J, et al. Patient-reported financial toxicity in multiple sclerosis: predictors and association with care non-adherence. J Mult Scler. Published online August 18, 2020. doi: 10.1177/1352458520913977
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