Loss of ambulation is a dreaded and inevitable milestone in Duchenne muscular dystrophy (DMD). DMD standard of care guidelines have recommended custom manual wheelchairs (mWC) for ambulatory boys with DMD who have difficulty with long distance and for those whose walking is arduous. When ambulation is close to being lost, power wheelchairs (pWC) are recommended, with a custom mWC to serve as a backup. Unfortunately, access to necessary durable medical equipment (DME) is often delayed, sometimes by a year or more, due to insurance-related barriers.
In our MDA clinic, WI Medicaid is the most common primary insurance for our patients with DMD. We performed a retrospective chart review of our teenage and young adult Medicaid patients, looking at when mWC and pWC were available in their homes as compared to their loss of ambulation. Nearly all had a mWC they used prior to their pWC being ordered. Often, this mWC was not custom, but a “loaner” or one provided by another family. This use of loaned ME is often advised by WI durable medical equipment (DME) companies whose experience has been that WI Medicaid may not authorize payment for a pWC within 5 years of ordering a mWC, despite a patients functional change. We have also found that similar barriers exist in our patients with commercial insurance. For boys with DMD, the timing of ambulation slowing and loss clearly argues for more flexible and responsive DME policies.
As Medicaid policies vary by state, we are now surveying other MDA clinics to understand how mWC and pWC acquisition vary across states. While our immediate goal is to use this information to streamline DME access and reform policy in WI, our findings can be used to ensure equitable, timely, and guideline-informed care across the country.