Ways to overcome the financial burden of cancer

Capping Medicare costs for cancer treatment regardless of where the care takes place could be a major factor in alleviating the financial toxicity that patients experience when fighting the disease, according to researchers at the University of Illinois College of Medicine.

The high cost of cancer treatment and out-of-pocket expenses is forcing millions of individuals and their families to struggle financially, referred to as “financial toxicity,” said Carl Asche, MBA, MSc, PhD, research professor at the University of Illinois College of Medicine at Peoria and lead author on a new position paper published in the journal Society of Behavioral Medicine.

“Financial toxicity can extend well beyond the active treatment phase and have substantial influence over a household’s economic reserve and resilience well into the future,” said Asche, who is also a member of the University of Illinois Cancer Center’s Cancer Prevention and Control program.

In 2014, the Agency for Healthcare Research and Quality (AHRQ) estimated total cancer expenditures in the U.S. were $87.8 billion, with $3.9 billion accounting for out-of-pocket costs. This year, the National Cancer Institute (NCI) projects that total to rise to $173 billion. That figure, Asche said, does not reflect indirect costs, such as those resulting from lost earnings.

Medicare currently has no out-of-pocket maximum for cancer treatment, Asche said. Annual out-of-pocket expenditures for a new cancer diagnosis can range from $2,116 to $8,115. The costs are highest for individuals without supplemental insurance, consuming 25% to 63% of annual income. In addition, 12% to 46% of out-of-pocket spending is linked to inpatient hospitalizations, he said.

“Following an actuarial analysis, Medicare should implement a catastrophic coverage threshold for all its beneficiaries, setting a cap on annual out-of-pocket expenses,” Asche said. “Such a threshold currently exists in Medicare Part D plans, but we recommend extending it to all aspects of Medicare.”

Of the 9.5 million U.S. adults aged 50 years and older diagnosed with cancer from the years 2000–2012, 42.2% had depleted their assets within two years and 38.2% were financially insolvent within four years, Asche said. Bankruptcy rates are 2.65 times higher among cancer survivors than individuals without a cancer diagnosis. Due to the growth and aging of the U.S. population, the number of cancer patients is expected to increase to 19 million by 2024. Seventy percent of Americans said they want to discuss the costs of care with their health care providers, but only 28% report doing so.

“Delaying or deferring these conversations can have major financial consequences for patients,” Asche said.

Financial toxicity can impact directly on clinical outcomes and patient experiences, Asche said. Cancer survivors who have filed for bankruptcy have a higher risk of mortality than those who have not, for example. Families often make substantial financial and other behavioral adjustments to their budget and expenses following a cancer diagnosis, which can have a negative impact on both the patient and other family members. These behaviors often include nonadherence to medications; opting out of more beneficial therapies due to cost considerations; cutting back on necessities; depletion of retirement savings; and the accumulation of credit card debt.

“Cancer survivors who experience higher financial toxicity also report greater levels of pain, higher rates of depression, greater levels of anxiety, and poorer overall quality of life,” Asche said. “These survivors also report higher symptom burden and are more likely to reduce their level of employment or stop working all together.”

In addition to capping Medicare payments, Asche and his colleagues developed several other recommendations to alleviate financial toxicity for cancer patients. A second such suggestion is converting to clinical pathway payment programs using evidence from the End-Stage Renal Disease Prospective Payment System to model how payments for drugs, laboratory services, and support services can be bundled and applied to other high-cost varied disease processes. Consideration should also be given to protecting patients with pre-existing conditions, as they may need to switch insurance plans due to a change in employment.

Limiting non-Affordable Care Act (ACA) compliant short-term health plans is another recommendation. Legislation was recently proposed to extend and increase access to short-term health plans from three to 12 months. The plans, Asche said, are not required to meet all ACA requirements, including essential health benefits.

“This rule has the potential to discriminate against cancer patients,” Asche said. “Their structure requires higher cost sharing and lower coverage, which is not suitable for this population. If these plans expand in the market and healthy individuals shift to their pools, a health insurance death spiral will be created for sicker individuals who cannot leave their plans and are faced with even higher premiums.”

The Family and Medical Leave Act of 1993 (FMLA) requires certain employers to grant family and medical leave when needed, such as following the birth or adoption of a child, or when an employee or close family member has a serious medical condition. However, not all employers must comply by the law and not every employee is eligible. Expanding the FMLA to include paid leave for 12 weeks for all employees would provide both short- and potentially long-term protection from some aspects of financial toxicity, Asche said. And finally, all health care providers need to have accessible and comprehensive cost information, allowing health care consumers to make better-informed decisions on the price of their care.

“Individuals in other roles of supportive care in the health care system, such as social workers or financial counselors, may be better suited to have these conversations,” Asche said. “To be effective, they will have to work more closely with oncologists and other health care providers as part of the provision of comprehensive cancer care.”

Co-authors on the paper include Karriem Watson, DHSc, MS, MPH, Meredith Greer Baumgartner, MD, Marian Fitzgibbon, PhD and Susan Hong, MD, MPH, FACP, all of UIC; Joanna Buscemi, PhD, DePaul University, Chicago; Melissa Simon, MD, MPH, Northwestern University, Chicago; Robert Winn, MD, Massey Cancer Center, Richmond, Va.; Joanne Glenn, Women on Top of Their Game, Chicago; and Candace Henley, The Blue Hat Foundation, Chicago. The lead author did not receive funding for the study, but corresponding authors were funded by the NCI U54CA202995 and PCORI Eugene Washington Engagement Award Grant [10629-UO1].

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