Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • Patient Involvement
          • True Cost of FSHD Study
          • Clinical Trials
          • Donate tissue
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • FSHD Connect Conference
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Clinical Trials
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • Global Collaboration
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • JOIN US
  • Donate
  • JOIN US
  • Donate

True Cost of FSHD

Home / FSHD Research / True Cost of FSHD

Posted on: Aug 22, 2022

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

by June Kinoshita, FSHD Society

When living with FSHD, the costs can add up: insurance and medical bills, adaptations to homes and vehicles, and the cost of durable medical equipment like wheelchairs.

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.

Share

Filed Under: FSHD Research

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by