Rare Disease Report

Experiencing Financial Hardship as a Patient

FEBRUARY 23, 2018
Mathew Shanley
At the Cost-Sharing Roundtable hosted by the Patient Access Network (PAN) Foundation in Collaboration with The American Journal of Managed Care on Friday, K. Robin Yabroff, Ph.D. presented data explaining the economic struggles that can be had by those who need medical attention.

In the session titled “Financial Hardship: An Emerging Concequence of Illness in the United States,” Yabroff, Strategic Director of Economic Burden of Cancer at the American Cancer Society, led with quotes from anonymous American patients who had experience with financial hardship due to illness.

“I am still paying debts accrued from co-payments or hospital bills not covered by my insurance… and paying credit card debt that was accrued during my time out of work,” read one. “We had to let our home go back to the bank… after 20 years of home ownership we had to file bankruptcy,” read another.

Yabroff noted early on in her presentation that a phenomenon that people with medical conditions often consider is “job lock,” which she defines as a patient keeping a job, despite it not being an ideal situation, because of the health insurance and benefits that come along with it.

“I stayed with a company that provides excellent health benefits rather than seek higher paying jobs where the benefits might not be as good,” a third anonymous quote said.

In the United States, there is an increasing prevalence of chronic conditions and, with that, increasing healthcare expenditures, including out-of-pocket spending. In 2017, it was recorded that at least 50% of all adults in the U.S. have more than one chronic condition, and 46% of individuals with at least one chronic condition have high-deductible insurance plans. Because of the increasing cost of treatment, patients can feel lasting effects physically, psychologically and financially, and many delay or completely forgo healthcare.

In August, Novartis’ recently-approved chimeric antigen receptor (CAR) T-cell therapy tisagenlecleucel (Kymriah) had its initial cost set at $475,000 for a single infusion. While the amount was described as “cost-effective” for its value by representatives from Novartis, and it is within the range widely anticipated by oncologists, it should be considered, Yabroff says, that the median household income in the United States in 2015 was $56,000.

“Financial hardship is common – especially in the working-age population,” she says. “Many of the risk factors for financial hardship are those associated with poor health outcomes – being uninsured or underinsured, etc. They’re all associated with health and health outcomes.”

When it comes to addressing financial hardship, certain strategies should be put into action. The patient should turn to family members for financial navigation when there are questions or concerns being raised. Caregivers and providers should be consulted about expected costs and the benefits of potential treatments. Employers should be open to discussing workplace accommodations and paid sick leave. Each of these can assist in alleviating the stress that is often experienced by patients with severe medical conditions.

For more from the PAN Foundation, The American Journal of Managed Care, or other meetings pertaining to the rare disease community, follow Rare Disease Report on Facebook and Twitter.
 

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