New Study Confirms the High Costs of MS to Individuals and the U.S. Economy — (“The Economic Burden of Multiple Sclerosis in the U.S.”)

A new study, commissioned by the National MS Society, shows that for the nearly 1 million people living with MS in the U.S., the average total cost of living with multiple sclerosis is $88,487 per year, underscoring what many people affected by MS know all too well – MS is a highly expensive disease. The total estimated cost to the U.S. economy, including government, industry and individuals, is $85.4 billion per year. Direct medical costs such as doctor’s appointment and medications are the biggest contributor to the high cost, with disease-modifying therapies (DMTs) being the biggest cost of living with the disease. The medical costs associated with living with MS are $65,612 more each year than medical costs for individuals who do not have MS. The actual amount spent per year varies from person to person based on many factors, including use of DMTs, daily life needs and health insurance coverage. The study also factored indirect and non-medical costs, such as costs of daily living, early forced retirement, home modifications and more. Carepartners pay an average of $4,333 each year to provide care to someone living with MS. “While we’ve long known MS is a highly expensive disease, this study confirms the real impact these costs have on people with MS, their families and carepartners—as well as the U.S. economy. Urgent and immediate action is needed to ensure the cost of care is affordable and treatment for MS is accessible,” said Cyndi Zagieboylo, the National MS Society’s President and CEO. “It’s important to thank the nearly 1,000 people affected by MS who gave their time to be a part of this study so we can accurately understand their experience and the financial challenges this disease has brought to their lives.” Learn more about the cost of living with multiple sclerosis and resources to help. 

Details of the Study

• To estimate the national economic cost of MS, researchers reviewed health claims data from Medicare and private insurer sources, and mortality data. They also conducted a survey of 946 people living with MS. The investigators compared costs between people with MS and matched people without MS.
• The team found that of the overall annual cost to the U.S. economy of $85.4 billion, $63.3 billion was in direct medical costs such as prescription drugs. Nearly $22.1 billion was in indirect or non-medical costs, including productivity loss, caregiver costs, and lost earnings.
• On an individual level, medical costs, especially DMTs, were the biggest cost of living with MS. The medical costs associated with living with MS are $65,612 more each year than medical costs for individuals who do not have MS. The annual costs to individuals on an MS disease-modifying therapy ranged from $57,202 to $92,719, depending on their age and gender. 

Key Points

 The National MS Society commissioned this study to better understand the financial burden of MS on people with MS, their families and the U.S. economy. While we have long understood that MS is an expensive disease, having data can help identify the most significant factors and direct our advocacy efforts to propel policy changes.The National MS Society is committed to ensuring people with MS have access to personalized, affordable, high-quality healthcare. The medical costs associated with living with MS are $65,612 more each year than for individuals who do not have MS, with the biggest medical cost being disease-modifying therapies. The Society is currently advocating for policies to reduce high prescription drug costs and helping people with MS afford high-quality health insurance, learn more here. Watch the Society’s Vice President of Advocacy, Steffany Stern’s testimony before the Senate Finance Committee and learn more about how to be an MS Activist. People with MS are protected from discrimination under the Americans with Disabilities Act (ADA).  If you are experiencing financial or employment challenges related to MS, the National MS Society can help connect you to the information, resources and support you need. 

• Connect with an MS Navigator by emailing contactusnmss@nmss.org or calling 800-344-4867
• Get the Financial and Insurance Information you need 
• Learn when and how to appeal an insurance decision 
• Guide to prescription financial assistance
• Learn more about your employment rights and how to request accommodations 

 “The Economic Burden of Multiple Sclerosis in the U.S.: Estimate of Direct and Indirect Costs,” by Bruce Bebo, Inna Cintina, Nicholas LaRocca, Leslie Ritter, Bari Talente, Daniel Hartung, Surachat Ngorsuraches, Mitchell Wallin, and Grace Yang, was published online on April 13, 2022 in Neurology®, the medical journal of the American Academy of Neurology.