Those who live with limb loss hope for improved coverage

By Margie O’Loughlin  More than 35,000 Minnesotans are living with limb loss, and thousands more are living with limb difference […]

Children living with limb loss, sitting in chairs and listening at the capitol

By Margie O’Loughlin 

More than 35,000 Minnesotans are living with limb loss, and thousands more are living with limb difference and mobility impairments. Many are unable to access prescribed orthotic and prosthetic care due to a lack of insurance coverage, forcing individuals and families to incur huge out-of-pocket costs. 

Some of their stories were shared at the state capitol this spring at a day-long event, called “So Every BODY can Move Minnesota.” It drew more than 100 advocates for two bills affecting people with limb loss and limb difference.   The goal of the two bills is to change the climate of insurance denials for orthotics and prosthetics prescribed by physicians for the health of their patients.  Seven other states are introducing similar legislation for fair insurance compensation this year, and five others passed similar legislation in 2022 and 2023.   

Three women at the rally doing squats and smiling.
Participants at the rally enjoyed a series of exercises.

Not medically necessary 

Elsa Keeler is a retired pediatrician. Five years ago, she was diagnosed with a rare form of bone cancer that required a full leg amputation. She received a prosthetic leg with a microprocessor knee, which was expected to last five years. Keeler is an active outdoors-person who loves to paddle in remote places like the Boundary Waters Canoe area. Her first prosthesis began to wear out after three and one-half years. When her doctor wrote a prescription for a replacement with a waterproof micro-processor knee, the claim was denied as “not medically necessary.”  These are three words that every person living with limb loss or limb difference quickly learns to dread. Being denied an orthotic or prosthetic device prescribed by one’s physician brings a range of feelings including frustration, disappointment, shame, and anger.   Like many advocates throughout the day, Keeler told stories about non-disabled relatives who received hip and knee replacements routinely so they could maintain their previous lifestyles.

Artificial hips and knees  are internal prosthetic devices. Keeler said, “People needing external orthotic and prosthetic devices should have those same privileges, too.” 

Bills receive bipartisan support 

Limb loss can affect anyone at any time. It’s estimated that about 500 Americans lose a limb every day. Sen. Karin Housely (R-Stillwater) co-authored the Senate bill, and met with advocates including several orthotics and prosthetics technology students from Century College, which is in her district.  The chief author of the Senate bill is Sen. John Hoffman (DFL-Champlain), whose daughter Hope Hoffman was born with spina bifida.

Her neurological condition has required multiple surgeries and prosthetic devices. Along the way, her family has had to push back against insurance claim denials that added to the frustration of living with a congenital condition.  The pending bills ask that state insurance plans be required to provide coverage at a rate equal to the federal Medicare program. 

Insurance premiums across the board would only be expected to rise 39 cents per member per month, on average. Thirty nine cents per month would make it possible for amputees to receive a waterproof limb to use while showering, or optimize their ability to bike, run, swim or play any other ambulatory sport.   

Movement is medicine 

In the last activity of the day, coach Adam Warden of the non-profit Wiggle your Toes led a mobility clinic with games for children, and high-intensity exercises for participants of all ages.   According to data from the Amputee Coalition, half of adults with disabilities get absolutely no aerobic exercise, and children with disabilities are twice as likely to develop obesity as those without.  By contrast, people with disabilities who are physically active are more likely to be employed, advance in their careers, and have improved physical and mental health.  To learn more about the bills before Minnesota House and Senate, go to msopp-mn.com 

A version of this story appeared in the TMC Publications, which are published in Minneapolis and St. Paul. 

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