A new study has revealed the financial costs for patients with amyotrophic lateral sclerosis (ALS) in the first year after diagnosis.
The research led by the ALS Association and published in the October edition of The American Journal of Managed Care said the average Medicare beneficiary diagnosed with ALS racked up first-year medical expenses of more than $47,000 — “more than three times higher than the average Medicare beneficiary,” the association said in an Oct. 23 press release.
The study also found that about one third of Medicare beneficiaries diagnosed with ALS take medication approved by the U.S. Food & Drug Administration, and that “the cost of these drugs is a key contributor to the disease’s overall financial burden.”
Data from the National ALS Registry and ALS Focus Survey Program showed that about two out of three Americans with ALS are enrolled in Medicare. Regardless of their age, people with ALS qualify for Medicare coverage when they start receiving Social Security Administration disability benefits.
The study’s authors analyzed Medicare fee-for-service data for 2017 through 2021 for part A, part B and part D claims. In addition to the average of more than $47,000 per patient with ALS in the first year, average patient liability — the costs not covered by Medicare and therefore the responsibility of the patient — was $6,802, more than three times the average liability cost for Medicare beneficiaries without ALS.
Newly diagnosed ALS patients averaged more than $11,000 in short-term hospitalization costs, versus $3,200 for Medicare beneficiaries without ALS. “Other notable cost drivers for people living with ALS included durable medical equipment ($5,583) and prescription drugs ($6,309),” the news announcement said.
“ALS is a devastating disease — physically, emotionally and financially,” said Sarah Parvanta, Ph.D., MPH, the ALS Association’s senior director of mission informatics and co-author of the study. “Our goal was to quantify the medical costs accumulated throughout the first year following an ALS diagnosis and get a better understanding of the types of care that drive up these costs. Understanding the magnitude of the financial burden faced by people living with ALS and the health-care system is essential if we are going to reduce the harms of ALS and make it a livable disease.
“We know the financial burden of ALS is underestimated by this study because the Medicare dataset did not include any non-medical costs, like a wheelchair-accessible vehicle, home modifications, or lost income,” Parvanta added. “These expenses can be overwhelming and cause stress, added work burden, and debt for people living with ALS and their families.”
