Nick Nelson with his mother Greta at Capitol
Saint Paul, MN -- Nick Nelson, and 11-year-old double leg amputee, had visited the State Capitol before on a school field trip. Thursday's journey to Minnesota's seat of government was completely different.
The 5th grader from Lillydale was there to testify in support of a bill that would require insurance plans to provide more uniform coverage of prosthetic devices and other orthotics that keep amputees mobile.
"Everyone should be able to have legs," Nelson told the Senate Commerce Committee, "Especially kids, because they keep growing all the time. They just grow up different sizes."
Nick was born with popliteal pterygium syndrome, marked by webbing on the back of his legs which kept him from straightening them. The webbed areas contained a complex network of nerves and vessels, which made removing them too risky.
Two years ago, at age 9, Nick made national news when he chose to sacrifice one of his biological legs for a prosthetic that could give him a better chance of standing up, walking and running like other children. A year later, at age 10, he agreed to let doctors remove his remaining leg.
See: Story about Nick's choice by KARE's Joe Fryer.
"I made a choice to amputate both of my legs," the youngster told the senators Thursday afternoon, "I knew I was going to be able to walk, run and jump and that's what I can do now. If I didn't have legs I couldn't do all that."
The author of the bill, Sen. John Marty, D - Roseville, said he's heard from people who were denied the prosthetic limb recommended by their doctors, and had trouble using the lower cost devices authorized by their insurance plans. Others told him they'd been hampered by spending caps, expensive co-pays and deductibles.
Marty's legislation would require insurers to bring their coverage in line with federal insurance plans. It would affect those who get prosthetics through private insurance plans, a group Marty says numbers 21,000 in Minnesota.
Aaron Holm, a double amputee from Shakopee, told the panel he lost his legs above the knees after being pinned by a vehicle while changing a co-worker's flat tire. He credits the care paid for by Worker's Compensation for his incredibly speedy return to work and his family life.
"I needed this, this, and this for my recovery," Holm explained, "I got this, this, and this. I got back to work and kept moving forward."
He said, based on what he's learned by talking to other amputees who've sought him out through his Wiggle Your Toes Foundation, Holm believes it would've turned out differently if the accident would've occurred on his own time.
"If I was on a private insurance plan at that time I probably would not be here today. I would not have the legs, as a bilateral above knee amputee, to be able to be as mobile as I am."
The "legs" he has are known as C-Legs, a computer enhanced prosthetic leg system made by Otto Bock, a global health orthotics company based in Germany. It has a local plant in Plymouth.
The Minnesota Chamber of Commerce opposes the bill. Cecilia Retelle, the education and health policy manager at the Minnesota Chamber, said prosthetic parity is another government mandate that will drive up insurance premiums paid by businesses for their employees.
Gregory Bartsh of Health Partners, speaking on behalf to the Minnesota Council of Health Plans, also opposed the bill. Insurers are especially uncomfortable with the language in the bill that would allow medical providers to have the final say on the appropriate prosthetic.
Bartsh told lawmakers Minnesota insurers already do cover most prosthetics, except for those needed for sports competitions. As for those who've complained about resistance from insurance plans, Bartsh said he'd need more details.
"We do want to know those things, because we do cover those things. And if there are specifics we do want to find that out. Are they our members? Are they self-insured members? Is it someone out of state? If there's an issue we want to be able to address it."
Opponents also criticize the idea because it applies to traditional insurance plans. They say larger companies that are self-insured and use insurance companies only as third-party administrators wouldn't have to meet the same standards.
Nick's mother, Greta, told KARE she's spent an incredible amount of time in coverage disputes with insurers over the years. In addition to Nick's 34 operations during the course of his lifetime, her daughter Naomi is also a childhood cancer survivor.
"When your children are sick and fighting for their lives, you shouldn't have to constantly be arguing with an insurance company about covering something that's supposed to be covered in your plan."
Greta Nelson, who is also a registered nurse, said so far most of Nick's prosthetics have been covered. The future, when her son grows up and enters work force, is what worries her the most.
"After seeing my child make such a life-changing decision, having great goals, plans for his future to be an active, productive member of society," she told senators.
"I would really hate to have a health plan look at him and say 'I'm sorry, you made a bad choice back when you were 9-years-old. These legs are a luxury. A normal life is a luxury. And sorry, if you want legs you got to take care of it all on your own, whether you pay premiums or not'."
The committee OK'd the bill and referred it back to the Health Committee chaired by Sen. Marty.
(Copyright 2010 by KARE. All Rights Reserved.)