True cost of myasthenia gravis extends far beyond treatment, review finds

The financial burden of myasthenia gravis (MG) extends well beyond medication, hospital stays, and doctor visits, with reduced ability to work, lost income, and a poorer quality of life accounting for a substantial share of the disease’s overall impact on patients and society.

That’s according to a systematic review of published studies, which also showed that although MG’s impact on quality of life and life expectancy added substantially to the overall burden, it was rarely included in economic estimates.

These less visible consequences, which researchers call intangible costs, are particularly important when weighing the high prices of newer MG treatments against their potential benefits. Leaving them out could underestimate the disease’s true burden and the value of treatments that improve patients’ lives.

“Total costs of MG need to be included together with the expected benefits from new treatments when performing cost-benefit analyses,” researchers wrote. “Precise knowledge of such costs is essential for healthcare planning and to ensure the availability of optimal treatments.”

The findings were described in the study “Healthcare costs and burden of myasthenia gravis for patients and society: a systematic review,” which was published in the Journal of Neurology.

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Healthcare costs varied between countries

MG is an autoimmune disease that causes symptoms such as muscle weakness and fatigue, which typically worsen with repeated activity. These symptoms can interfere with daily activities and employment, sometimes becoming severe enough to require hospitalization.

Managing MG often requires long-term medications to control symptoms and suppress the immune system, along with care from several specialists. Newer treatments have shown benefits for people with severe or difficult-to-treat MG, but their high costs raise questions about whether these benefits justify the expense.

To help inform these decisions, researchers in Norway systematically reviewed studies published up to March reporting healthcare costs associated with MG. Of 1,374 records initially identified, 44 studies were included. They drew on healthcare records, insurance databases, and patient surveys from countries in North America, Europe, and Asia.

Direct costs tend to be highest during the first year after diagnosis.

Direct healthcare costs varied considerably between countries, ranging from €3,592 to €12,185 (about $4,000 to $13,571) per person annually in Nordic countries, with similar estimates elsewhere in Europe.

Higher costs were reported in the U.S., where mean annual healthcare costs reached $65,000 for people with generalized MG, the most common and severe form of the disease, versus $15,600 for people without the disease, according to one study.

“Direct costs tend to be highest during the first year after diagnosis,” the researchers wrote. Hospitalizations, treatments, and myasthenic crisis, a life-threatening worsening of muscle weakness that can affect breathing, contributed to expenses.

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MG also affects people’s ability to work

Medical expenses were only part of the burden. MG also affected people’s ability to work, with indirect costs ranging from €2,676 to €8,666 (about $2,982 to $9,656) per person annually in Nordic countries.

A nationwide study in Denmark showed that 41% of people with MG had taken at least nine weeks of sick leave during their first year after diagnosis, compared with 3% of people in a reference group.

A German survey found that 73% of people employed when symptoms began experienced work limitations, while nearly half reported being unable to work. An international study reported that 11% of participants had retired early, while caregivers also lost working time to provide support.

Intangible costs of MG

Beyond medical expenses and lost income, the researchers highlighted another substantial burden: intangible costs. These represent the estimated economic value of nonfinancial losses resulting from reduced health-related quality of life and lost years of life, rather than money directly spent or income lost.

Beyond physical symptoms, worries about disease progression and the possibility of worsening symptoms also contributed to poorer quality of life.

MG’s impact in quality of life was greater among people with more severe MG and among women, while those in long-term remission had quality of life similar to people without the disease. MG was also associated with an increased risk of premature death, particularly during the first year after diagnosis.

In one Norwegian study, intangible costs reached €12,484 (about $13,910) per person annually, including €4,056 (about $4,519) attributed to poorer quality of life and €8,428 (about $9,391) to lost years of life. Together, they accounted for approximately half of MG’s estimated total societal burden.

Yet most economic studies did not include these losses, suggesting that conventional estimates may substantially underestimate MG’s overall burden on patients and society. This gap is particularly important as newer MG treatments become available, some of which have listed prices reaching $500,000 annually in certain countries.

Although expensive, treatments that provide better disease control could potentially reduce hospitalizations, help people remain employed, and improve quality of life — benefits that should also be considered when assessing whether their costs are justified.

“It is important to include these aspects when evaluating MG-related costs, burden of disease, and economical consequences of health-related interventions,” the researchers wrote.