By: Bill Sarraille, Wayne Winegarden, and Amanda Hill
Living with facioscapulohumeral muscular dystrophy (FSHD) can affect nearly every part of daily life. A new study is the first to look at the medical costs of FSHD in the United States. The findings show that people with FSHD need much more medical care than people without the disease and, as a result, incur higher medical costs. Even more importantly, the study suggests that the full cost of FSHD is probably much higher than the numbers reported in this first-of-its-kind study. With multiple potential treatments progressing through FDA trials, documenting these costs is important because insurance companies use the information to determine coverage policies.
Researchers working with the FSHD Society studied insurance claims from Medicare and commercial health plans between 2018 and 2021. They compared 383 people with FSHD to nearly 2,000 people without the disease.
The study found that average yearly insurance claims were about $19,400 for FSHD patients with private insurance. By comparison, people without FSHD averaged only about $5,250 in yearly insurance claims. People with FSHD also had higher prescription drug costs.
These numbers likely underestimate the full cost of living with FSHD. Insurance claims only capture services that are billed to a health plan. They do not include many expenses that families bear every day. These include unpaid care from family members, lost wages when patients or caregivers cannot work, home modifications, transportation costs, and other out-of-pocket expenses. In addition, the researchers only had access to a few years of medical claims, so they could not measure the lifetime impact of a progressive disease like FSHD.
As new treatments are developed, insurance companies and government health programs, like Medicare and Medicaid, often ask whether a therapy is worth the cost. To answer that question, they compare the price of a treatment with the medical costs and health problems it may prevent or reduce. If the costs of FSHD have not been documented, the value of a new treatment may be underestimated. Better information about the full burden of FSHD can help support fair coverage and reimbursement policies once therapies are approved.
The study also found that people with FSHD were more likely than others to have cerebrovascular disease, including bleeding or blood clots in the brain. This is a new discovery for FSHD and requires further research to verify this finding.
There is real reason for hope. Several promising therapies are now being tested in clinical trials, and many in the FSHD community are optimistic that the first approved treatment for FSHD could become available within the next few years. Studies like this one help build the evidence needed to show why those therapies matter—not only for improving lives, but also for reducing the long-term burden of this disease on patients, families, and the healthcare system.
If you would like to read the full study, it is available here: https://pmc.ncbi.nlm.nih.gov/articles/PMC13282961/
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