Living a life less than “normal”:the fight for prosthetic parity

By Meghan Dusek

There’s a sort of tunnel vision that affects people when it comes to health—a very “it won’t happen to me or my children” attitude—especially on a topic that might seem implausible and irreverent, like prosthetics care. And with luck, they won’t ever have to think about it. For those whose lives do take a turn that way, it can be a devastating surprise to find out that their insurance coverage doesn’t extend to prosthetics.

Metropolitan State University graduate student Jennifer Klein has worked with prosthetics at Gilette Children’s Hospital for almost five years, and recently helped found a subcommittee of the Minnesota Society of Orthotists, Prosthetists and Pedorthists, lobbying for prosthetic parity in the state of Minnesota.

Basically, prosthetic parity means that within the state of Minnesota, insurance companies will be required by law to cover certain services related to prosthetics and prosthetics care. Most major insurance companies do have provisions for this sort of care, but many employer-based and private companies don’t—and this affects an estimated 17,216 amputees in the state of Minnesota alone.

“Several states have already passed prosthetic parity laws, which ensure prosthetic coverage for people with private insurance. It’s been a big thing in our field recently and the prosthetic and orthotic magazines usually have articles about it,” Klein said.

“Minnesota has been pretty good about prosthetic coverage, but we’ve seen a trend towards limiting coverage. I got involved after I had to tell a prosthetic patient that although his insurance covered his amputation, he would have to pay out-of-pocket for his prosthetic leg, which would be between $10,000 and $15,000.”

The cost is minimal: premiums would increase around 12 to 25 cents per member per month. Compare this to the cost of common problems with amputees unable to obtain prostheses (sedentary lifestyles lead to higher risks of heart attacks; knee and hip problems from not walking correctly; or crutch overuse causes wrist, elbow and shoulder problems). As a preventative measure from these problems, the costs shift away from the public sector, and this portion of the population can be contributing members and not dependents on society. Additionally, it is estimated that for every dollar spent on rehabilitation (including prosthetic care), there is a savings of more than $11 in disability benefits.

“This bill is important to me because most people cannot afford prosthetic care. It will affect middle class people who have private insurance,” Klein said. “People should care because an amputation alone can be devastating, and not having prosthetic coverage on top of that can be life altering.”

There’s another, forgotten portion of the population who make up a large percentage of the people who will be most affected by this movement. Children with prosthetics may be covered by their parent’s insurance plans now, but what will happen when they can no longer be covered under those plans and their options are more limited because of their condition?

Local nine-year-old Nick Nelson has become something of a celebrity: he was featured on the “Today” show’s top list of 2008 stories, he’s been recognized in Scottsdale, Ariz. by a Maryland fan, he’s even met former president Bill Clinton. Why all the attention?

After being born with a rare congenital condition which has required multiple surgeries, rendered him unable to walk and confined to a wheelchair, Nick made the decision to amputate both legs in favor of prostheses.

“We’ve been incredibly fortunate and had no problems with coverage yet,” said Nick’s mother, Greta Nelson, via phone interview. “But there’s no guarantee that it will last forever.

“A parity law in Minnesota and on the national scene guarantees he’ll be able to live his life to the fullest extent without worry, and that he’ll get the things needs to live a decent life, in addition to regular medical care.”

Nick’s indomitable spirit has as much to do with his celebrity as his condition—in his words, the biggest obstacle he has to face is getting the motivation to do his math homework. Greta, who works as a RN in a neo-natal clinic, admitted to feeling frustrated and overwhelmed at times—“when the wheelchair gets stuck, or I can see the pain in Nick’s eyes”—but said that after a visit to Gilette’s or a shift at work, after seeing what other people are going through, she knows she and her family are blessed to be able to handle what they’ve been given. And they are blessed to have the ability to make differences for others.

“As a state and national community, it is so important for us to support each other—our neighbors do things that they never imagined they’d have to do, and that we can’t imagine,” she said.

“We need to make the laws and support the movements for each others’ sake. When we make the effort in support of others, we can make such big, wonderful changes for people who need that extra support.”

For more information on the Minnesota prosthetics parity subcommittee, a meeting is being planned for March 16 to rally interest and fundraising ideas. The Amputee Coalition of America also list of ways to get involved on their Web site: www.amputee-coalition.org.