True Cost of FSHD

Part of our battle plan to ensure patients will have access to treatments

by June Kinoshita, FSHD Society

The FSHD Society is undertaking a major study of the full socioeconomic burden of FSHD. This is one of the most important and urgent studies we have ever done, and is the first of its kind in the US. Our goal is to learn about the costs in medical care as well as the unreimbursed and hidden costs that patients and families bear in out-of-pocket spending, unpaid caregiver hours, and lost educational and work opportunities.

Why is this so important? Our study will bolster the socioeconomic case, or “value proposition,” for treatments for FSHD. This, in turn, influences the price of treatments and how much government healthcare systems and private insurance are willing to pay for it. We will publish our findings in key journals to make sure decision makers understand the true costs of living with FSHD and the difference that treatments can make in people’s lives.

Here’s the plan. Part 1 is a collaboration with companies that own huge insurance claims databases to analyze how people with FSHD use the healthcare system and what the costs are. Part 2 is our True Cost of FSHD survey, which will soon be sent out to hundreds of patients and family members who volunteered to take the survey. This study would literally not be possible without the help of our community, and for that we are incredibly grateful. There’s still time to sign up to be part of this study.

We know that the lifetime costs of FSHD are significant, but there has been very little research done to date on the broad socioeconomic impact of FSHD. Yet it’s imperative to understand the true costs, especially as we get closer to treatments. Our vision extends beyond North America. We are encouraging patient advocates in the World FSHD Alliance to undertake health economics research in their countries.

This, too, is part of our mission to help all our families – by fighting for affordable and accessible treatments everywhere.