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Multiple Sclerosis Costs More Than $85 Billion Annually, New Study Finds
The Policy Changes That Could Fix That

Article In Brief

A new study from the National Multiple Sclerosis Society reported that the estimated annual cost of multiple sclerosis in the US is approximately $85.4 billion, including direct medical costs of $63.3 billion and indirect and non-medical costs of $22.1 billion. The main driver of the costs, which are significantly higher than previous estimates, came from retail prescription medications.

The economic burden of multiple sclerosis in the United States is even higher than previously reported, with an estimated annual cost of approximately $85.4 billion, including direct medical costs of $63.3 billion and indirect and non-medical costs of $22.1 billion, according to a new study funded by the National Multiple Sclerosis Society (NMSS) and published in Neurology on April 13.

The main driver of the burden was direct medical costs, the lion's share of which came from retail prescription medications (54 percent), clinic administered drugs (12 percent), medication and administration, and outpatient care (9 percent), reported the authors, led by Bruce Bebo, PhD, executive vice president for research at the NMSS. The average person with MS paid $65,612 in excess annual medical costs, with $35,154 of those costs being paid for disease-modifying therapies (DMTs).

These figures are significantly higher than previous estimates even when adjusted for inflation, such as a 2016 study which put the average total cost of MS at about $47,215 per-patient per-year in 2004 dollars. That's because prior studies of the economic burden of MS are outdated, due to recent changes in estimates of the prevalence of the disease as well as the development of new therapies over the last two decades, the authors noted.

To develop their new figures, the authors used a population-based health estimate from the US Multiple Sclerosis Prevalence Workgroup, published in Neurology in 2019, which used insurance claims and the US census to determine that approximately 1 million individuals were living with multiple sclerosis in the United States that year.

The prevalence and economic burden of MS is only going to increase in the coming years, the authors warned. They estimated that by 2039, there will be nearly 1.2 million people with MS in the US and the economic burden will increase to $108.1 billion.

Expert Commentary

“I think this is an extremely important study that updates our knowledge of the overall costs to the nation of MS, but also more importantly the direct and indirect costs to people with MS and their families,” said Dennis Bourdette, MD, FAAN, professor emeritus of neurology at Oregon Health & Science University (OHSU) and previously the executive director of the OHSU Multiple Sclerosis Center and co-director of the VA MS Center of Excellence-West. “I think we have definitely been working with an inaccurate understanding of the true prevalence and price of MS.”

Over the last decade, the cost of most DMTs has increased by 10 percent or more virtually every year, with many DMTs exceeding $90,000 per year and the associated out-of-pocket costs becoming increasingly burdensome for patients and their families, according to a 2021 study published in Therapeutic Advances in Neurological Disorders.

According to a 2020 survey conducted by the NMSS, 40 percent of those living with MS report that they are unable to stick to their treatment plan as prescribed by their provider due to the rising cost of DMTs, and one in 10 had stopped the use of their DMT entirely because they could not afford it.

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“While prescription drug costs may be particularly high for MS patients, the issues individuals with MS face are also shared by many other patients with neurologic disease. Our patients have to deal with the actual disease itself, while also navigating a complex system to maintain access to treatments, obtain caregiving needs, and other important supports such as equipment or home modifications. While this is challenging for anyone, the concern is that these challenges may disproportionately hurt vulnerable populations.”—DR. AMY TSOU

“We've definitely had patients who were doing reasonably well on a therapy and then had a change in insurance that either didn't cover that medicine or had a higher co-pay, so they had to stop that medicine and had a reactivation of their MS,” Dr. Bourdette said. “There is definitely a subset of patients for whom DMT would be appropriate who aren't able to take it consistently or aren't able to cover the out-of-pocket costs.”

“It's such a success that today there are so many more disease modifying treatment options for patients compared to 15 years ago. However, as this study demonstrates, prescription drug costs are playing a huge part in the economic burden of MS,” said Amy Tsou, MD, a neurologist at the Michael J. Crescenz VA Medical Center in Philadelphia and co-director of the Evidence-based Practice Center at the ECRI Institute.

“From other studies, we know that out-of-pocket costs have shot up for MS patients. One recent study reported a jump from $15 to $309 a month from 2004 to 2016! For individual patients, depending on their coverage, this may lead to delays in starting treatment or interruptions in treatment, particularly for plans that require physicians to seek reapproval every six months. We know many physicians report cases in which prior authorization requirements have been bad for their patients.”

This picture is unlikely to change without significant modifications to the US health care and prescription drug financing model. A proposal that would have allowed Medicare to negotiate prescription drug prices, as the Department of Veterans Affairs is already allowed to do, cleared the House of Representatives in November as part of the Build Back Better Act, but that legislation ended up falling apart in the Senate. In his first State of the Union address on March 1, President Biden again called for Congress to let Medicare negotiate drug prices.

“In the new paper, they estimated that about 30 percent of working age populations with MS were on Medicare, so to the extent that Medicare would be enabled to negotiate pricing for DMTs, that would certainly impact the cost burden to that population,” said Bruce A. Cohen, MD, a professor of neurology and chief of MS and neuroimmunology at the Northwestern University Feinberg School of Medicine. “The VA pays considerably less than Medicare does for these drugs.”

“We need to have price controls on the disease modifying therapies, and that's going to require federal intervention,” Dr. Bourdette agreed. “The only way you can really control and modify the ever-rising prices of DMTs is if major insurers, and in this case Medicare, can take the lead, refuse to continue to pay whatever they're asked to pay. We have to be able to negotiate prices down.”

But even when drug prices do go down, those savings are often not passed on to the patient, Dr. Cohen observed. “In the case of the two generics currently available, the glatiramers and the dimethyl fumarates, the wholesale costs are going down, in terms of what the payers are actually paying to the pharmaceutical companies for the drug. But those savings aren't reaching the patients. Even though the wholesale cost for the generic fumarates has declined substantially for some products, many people are seeing their out-of-pocket costs actually increasing.”

“Health care financing is complex, but policy changes are needed to ensure the price of these drugs is not exorbitant and out-of-pocket costs for patients remain low,” Dr. Tsou concurred. “Even if we succeed in lowering out-of-pocket costs for patients–if the cost of drugs remains too high, those costs are still passed along to all of us.”

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“We need to have price controls on the disease modifying therapies, and thats going to require federal intervention. The only way you can really control and modify the ever-rising prices of DMTs is if major insurers, and in this case Medicare, can take the lead, refuse to continue to pay whatever theyre asked to pay. We have to be able to negotiate prices down.”—DR. DENNIS BOURDETTE

Although direct medical costs, including medications such as DMTs, represented about 75 percent of the economic burden of MS in 2019 according to the new study, indirect costs such as premature death, presenteeism, and absenteeism contributed an additional nearly $21.0 billion, while non-medical costs such as paid non-medical care and the purchase of special equipment added another $1.1 billion.

“If you need a motorized scooter and a vehicle that it can be moved into, that can cost many thousands of dollars, and many people don't have the resources for that,” Dr. Bourdette said. “Long-term rehabilitation services are difficult to pay for and that system also needs to be improved. We also need better payment for physical therapy. Right now, to get coverage for PT beyond a certain number of visits, you have to show improvement, and with a disease like MS the purpose of PT is to help you maintain and not lose ground rather than improve. This often results in sporadic coverage. Improved rehabilitative care and better coverage for these services would significantly improve the quality of life for many people with MS.”

Another key issue is access to caregivers and long-term care, Dr. Tsou added. “Caregivers are underpaid and there is a national shortage that has been exacerbated by COVID and caregivers leaving the workforce. For those families that need this kind of help, not being able to find a caregiver can be incredibly stressful.”

Dr. Bourdette argues for federal support for a better system of paid long-term care that prioritizes in-home care. “That is everyone's preferred option, and it costs less,” he said.

Ultimately, said Dr. Cohen, broad reform of the health care system is what's needed. “There is so much money in the system and too many intermediaries and organizational entities that are trying to get their piece of it that it just drives costs in ways that are becoming really difficult to sustain. There hasn't been the will yet to try to reform the system in a way that's consistent with the economic principles of the US and at the same time recognizes the need to make health care affordable to everybody. That's a difficult political, philosophical, and economic set of differences to try to reconcile, but it's clear that this sort of thing can be done in closed systems. The VA does it. Other countries are able to do it. This isn't just a MS problem, it's a problem that crosses all sorts of chronic disease states.”

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“In the case of the two generics currently available, the glatiramers and the dimethyl fumarates, the wholesale costs are going down, in terms of what the payers are actually paying to the pharmaceutical companies for the drug. But those savings arent reaching the patients. Even though the wholesale cost for the generic fumarates has declined substantially for some products, many people are seeing their out-of-pocket costs actually increasing.”—DR. BRUCE A. COHEN

Dr. Tsou agreed. “While prescription drug costs may be particularly high for MS patients, the issues individuals with MS face are also shared by many other patients with neurologic disease,” she said. “Our patients have to deal with the actual disease itself, while also navigating a complex system to maintain access to treatments, obtain caregiving needs, and other important supports such as equipment or home modifications. While this is challenging for anyone, the concern is that these challenges may disproportionately hurt vulnerable populations. I know we are all so busy these days, but I hope neurologists will find time to make following these policy debates a priority and consider advocating for structural policy changes when these issues arise in DC.”

Link Up for More Information

• Bebo B, Cintina I, LaRocca N, et al. Economic burden of multiple sclerosis in the United States: Estimate of direct and indirect costs https://n.neurology.org/content/early/2022/04/13/WNL.0000000000200150#:~:text=The%20cost%20per%20DMT%20user,if%20caregivers'%20costs%20were%20included.. Neurology 2022; Apr 13.
    • Hartung DM. Health economics of disease-modifying therapy for multiple sclerosis in the United States https://journals.sagepub.com/doi/10.1177/1756286420987031. Ther Adv Neurol Disord 2021; Epub 2021 Feb 17.
      • NMSS Survey: https://bit.ly/NMSSsurvey