#United States #Arlington #ALS Association #Amyotrophic Lateral Sclerosis #Medicare Costs

The Rising Costs Associated with ALS

A recent study conducted by the ALS Association has revealed alarming financial implications for individuals diagnosed with amyotrophic lateral sclerosis (ALS) who are enrolled in Medicare. Findings show that in the first year following an ALS diagnosis, these patients face an average medical expense of over $47,000—more than threefold the typical spending of an average Medicare beneficiary. This research was published in the October issue of The American Journal of Managed Care.

Understanding the Financial Burden

Sarah Parvanta, Ph.D., MPH, senior director at the ALS Association and co-author of the study, emphasized the devastating impact of this disease—not just physically and emotionally, but financially as well. The objective of the study was to quantify the medical expenses accumulating in patients’ initial year post-diagnosis and identify the primary drivers of these costs. Parvanta stated, “Understanding the magnitude of the financial burden faced by people living with ALS and the healthcare system is essential if we are going to reduce the harms of ALS and make it a livable disease.”

In the U.S., approximately 66% of people diagnosed with ALS are enrolled in Medicare, as indicated by the National ALS Registry and ALS Focus™ Survey Program. The eligibility for Medicare begins once an individual receives disability benefits from the Social Security Administration, regardless of age.

Key Findings of the Study

The researchers from the ALS Association collaborated with Avalere Health to analyze Medicare claims data from 2017 to 2021. They found that Medicare expenditures for those diagnosed with ALS averaged $47,450, compared to just $13,889 for beneficiaries without ALS. Moreover, the financial liability for ALS patients—that portion not covered by Medicare—was noted to be significantly higher ($6,802 versus $2,050 for non-ALS beneficiaries).

Among Medicare beneficiaries, short-term acute hospital care represented the largest expense, with ALS patients spending approximately $11,237 compared to $3,249 for those without the disease. Other substantial costs were linked to durable medical equipment, amounting to $5,583, and prescription drugs, which totaled $6,309.

Interestingly, the report found that only 5% of Medicare beneficiaries with ALS had claimed for edaravone, while just over 31% had claimed for riluzole within their first year. These utilization rates were lower than anticipated in light of existing clinical practice guidelines, indicating potential barriers to accessing these treatments.

Broader Financial Implications

Dr. Parvanta acknowledged that the study likely underestimates the true financial burden of ALS, as non-medical expenses—like wheelchair-accessible vehicles or home modifications—were not included in the dataset. Such costs could further strain patients and their families, leading to increased levels of stress and potential debt. A 2020 ALS Focus survey involving 440 participants revealed that one in four individuals either borrowed money or incurred debt because of treatment or caregiving costs associated with ALS.

Patients indicated that they found managing medical bills and understanding their insurance coverage to be particularly stressful, highlighting the need for more comprehensive support systems.

Moving Forward: The Need for Policy Change

Dr. Kuldip Dave, senior vice president of research at the ALS Association and a senior author of the study, noted that improving the financial situation for those affected by ALS would likely require substantial investment in new, effective treatments to slow disease progression and restore lost functions. Given that current treatment costs already pose affordability challenges, policymakers need to contemplate how Medicare can alleviate this significant financial burden.

Dave emphasized that those living with ALS should not have to compromise their financial health in pursuit of better physical well-being.

About the ALS Association

The ALS Association is a leading organization targeting ALS, committed to funding research, providing assistance to families affected, and advocating for better public policies. Its mission aims to make ALS livable and ultimately find a cure.

For additional insights and resources regarding ALS, visit ALS Association's website.