Prosthetic Leg Covered Only If Woman Quits Job

KANSAS CITY, Kan. – It is the time of year when you are re-enrolling for healthcare benefits.

But, there's one thing in your benefits package you probably never looked at, and it may cost you.

Health care plans vary among employers, employees, and plans. You expect private health insurance to be better than state assistance like Medicare and Medicaid.

We found that's not always the case.

Kathleen Gustafson is used to hurdling challenges.

Born with a birth defect, her lower leg didn't form properly. "For the first 10 years of my life I was in a cast or a brace," Gustafson said.

Doctors couldn't fix her leg. At age 10, Gustafson's doctors amputated her leg below the knee and gave her a prosthetic leg.

It didn't darken her spirits. It strengthened them.

"From that moment on life was great," Gustafson said. She could finally ride a horse, hunt, fish, and climb mountains. She led such an active life, many people never knew she had an artificial leg.

But Gustafson recently fell. She crushed her knee beyond repair. The only option was to amputate above the knee.

Gustafson remained hopeful, until her state insurance plan refused to pay for the type of prosthetic leg that best suited her lifestyle.

"It's really frustrating because this is the leg I need to get around and do what I do," Gustafson said.

Instead of a computerized electronic leg, Gustafson's state insurance plan only covered a less stable hydraulic leg. That leg makes it difficult for Gustafson to do her job. She's constantly asking for help.

"Honestly, I picked that leg up and threw it across the room more than a few times. I realized that my life as I probably knew it was over," Gustafson said.

Here's what makes this story so unusual. If Gustafson quit her job with the State of Kansas, Gustafson would be able to get the leg she needs.

Gustafson's state health insurance plan won't pay, but state Medicaid covers it.

"We have some folks that literally lost their job, they were unable to go back to work because they could not get a leg," prosthetist Matt Luetke said.

The state will pay for the foot and socket, but not the electronic computer chip in the middle. It says that part is above the standard of care. That is a decision her prosthetist opposes.

"That's almost become the standard of care in this day and age," Luetke said.

Gustafson grew so desperate, she paid for the middle herself. The cost is $29,000. That is twice what her insurance paid.

While Gustafson's life is marching on, there is still an uphill fight for other amputees across the country. So Gustafson is lobbying lawmakers in a grassroots effort to level the playing field in what is called prosthetic parity. Read More on the Topic

"For me disparity is disability. I'm not disabled this contract is disabled," Gustafson said. Eleven states passed prosthetic parity laws. The goal is to give amputees the same coverage as Medicaid, Medicare, and VA recipients.

Bills have been introduced in Missouri and the US Congress, but there's been no movement in Kansas.

"They are behind the rest of the states now," Gustafson said.

Officials with the Kansas Health Policy Authority refused to speak with call for action on camera. Gustafson says she never got a response from the state until her grassroots effort and our call to state officials.

Officials with the Kansas Health Policy Authority refused to speak with Call For Action on camera. Gustafson says she never got a response from the state until her grassroots effort and our call to state officials.

"When there was some thought that you might be calling on them I got a response that they were definitely looking into it," Gustafson said.

It allows Gustafson to hope for a better future, for her and other amputees.

"If I were someone who lost their leg for the first time and had to deal with that old leg I would give up," Gustafson said.

The Kansas Health Policy Authority says it's doing national research to figure out best practice guidelines and the cost for electronic prosthetics. Then, it will make a recommendation to the group that creates the state health plan contract.

Now, if the state makes a change it may do it retroactive to cover Gustafson's leg. But, no decision has been made.