Myasthenia gravis (MG) carries a high financial toll for health systems, patients and families every year, according to a recent review published in the Journal of Neurology.
Researchers in Norway looked at 44 studies from around the world that examined the financial costs of MG. They found that in the Nordic countries (Norway, Sweden, Denmark and Finland), the cost of treatment and follow-up for MG was about €3,500 to €12,000 per patient each year. Most of this cost was due to hospital care. Costs were similar in other European countries, but higher in the United States: One study of U.S. patients with generalized MG estimated the average healthcare cost at $65,000. In-patient hospital care was the largest cost, followed by drug costs.
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MG also keeps many people from working, which creates “indirect costs,” or costs to society beyond medical bills. Studies in the review estimated that sick leave, early retirement, welfare payments, and lost work time for family caregivers cost about €2,500 to €8,700 per patient each year in the Nordic countries. Across many studies, only about half of people with MG had jobs.
Beyond direct and indirect costs, MG also brings “intangible costs,” losses that don’t involve spending money directly. Research has shown that MG can shorten lives and lower quality of life, but cost studies rarely count these losses.
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The review found that medical costs tended to run highest in the first year after diagnosis, when many patients need hospital stays. In the U.S., a patient’s average healthcare costs during the first year after diagnosis was $48,848, compared with $24,015 the year before.
Every study in the review found that the most expensive care came during a myasthenic crisis, a sudden worsening of muscle weakness that makes breathing hard and often requires intensive care and a breathing machine.
Newer MG medicines work well but can cost up to $500,000 per year. The review’s authors warned that high prices keep many people from the best care. “Present pricing means that most MG patients do not have access to optimal treatment,” they said.
The authors also said that, “treatment cost data from Africa, Latin America, and large parts of Asia are lacking.”
