John Singer came to Dankmeyer in an interesting way. His son’s mother-in-law-to-be, a physical therapist, saw John’s irregular gait one of the first times that they met and asked John if he would like her to make an appointment with Dankmeyer’s Mark Hopkins. John accepted this offer and it’s been a transformative experience on multiple levels.
John has bilateral idiopathic denervation in both legs following two spine surgeries and foot surgery. Essentially, the muscles in both of John’s legs below his knees do not work, leading to an irregular gait, balance issues, and a drop foot on his right foot.
Working with Mark Hopkins and Sheryl Sachs at Dankmeyer and a neuro-physical therapist at the Physical Medicine and Rehabilitation Department at Johns Hopkins, John was prescribed Allard Blue Rocker Ankle-Foot Orthotics (AFOs) for both legs. In John’s words, the AFOs are “life changing,” permitting him to walk reasonably normally, travel abroad comfortably, and, perhaps most importantly, walk his son down the aisle at his son’s wedding without assistance.
Though John’s AFOs are made of carbon fiber they are not indestructible. Due to John’s renewed active lifestyle, he has had three AFOs that broke in less than three years of use. After his second AFO broke, John learned that while a typical carbon fiber AFO only has an expected life of three years Medicare and most private health insurance programs only will pay for a new AFO after five years from the date of its delivery. Due to this five-year rule, insurance typically will not pay to replace AFOs that break from normal usage in less than five years.
AFOs, whether new or a replacement, can cost over $1,000 when a patient has no insurance coverage and has to pay for them out-of-pocket. Even when there is insurance coverage, the patient’s co-pay is often over $200. After discovering these gaps in insurance coverage for both new and replacement AFOs and the resulting significant costs faced by the patients who need them, John decided to take action.
John’s actions take two forms. The first is advocacy, encouraged by Dankmeyer’s Sheryl Sachs. John testified twice in the most recent Maryland state legislative session (both times in shorts in February so his AFOs were visible to the legislators) in support of a successful effort which made Maryland the 44th state to require state-regulated insurers to pay for new AFOs annually if they break or a patient’s medical condition changes (this Maryland law does not effect Medicare and other federally-regulated programs). Also due to Sheryl Sach’s efforts, John had the privilege to share his AFO story with over 150 orthotics professionals at the American Orthotics and Prosthetics Association’s (AOPA) Annual Policy Forum in Washington, DC and joined AOPA members lobbying on Capitol Hill for better insurance coverage for orthotics. John describes his time with AOPA as, “two of the most meaningful and humbling days of my life.” (You can learn more about Advocacy on the Dankmeyer website by clicking here.)
Sheryl Sachs and John Singer at the AOPA Policy Forum.
John’s second action, done with his wife, Karen, and in partnership with the Physical Medicine and Rehabilitation Department at Johns Hopkins and the guidance of Mark Hopkins, is philanthropic. John and Karen made a one-time gift to create an AFO “library” at Johns Hopkins where patients can try out different types of AFOs to find out which AFO is best for them. John and Karen also created the “Singer AFOs For All Fund” at Johns Hopkins to provide financial assistance to individuals who would benefit from AFOs but could not otherwise afford them. John and Karen’s goal is to raise $250,000 for the Fund and they are providing seed money in the form of a matching grant for the first $125,000 in donations.
John’s daughter Amy, son Charlie, and daughter-in-law Kelly joined the family’s fundraising and awareness efforts. John shares a “proud father department” story. Amy arranged a fundraiser near where she lives in Washington. DC, with a goal of raising $1,000 to $2,000. Charlie and Kelly gave Amy a fundraising challenge telling Amy that they would match any money that she raised up to $5000. They matched the full $5000 as promised.
You can donate to the Singer AFOs For All Fund by clicking here.
John, his wife Karen and daughter Amy at a Washington, DC fundraiser that Amy organized.
