Alternative therapy could be the next step for those with spinal cord injuries

"She's pretty persuasive," says Sue Goodin, the center's founder. "The spinal cord injury community is very lucky to have someone like Chanda, because she won't stop until she gets good results from this so we can make [alternative therapies] more mainstream."

Hinton Leichtle's next task is finding patients. There are currently two who have completed the process of switching from their previous Medicaid plan to the new waiver, and four who are in the midst of doing so. With help from partners like Craig Hospital, the SCI Recovery Center and home health-care agencies, Hinton Leichtle is working to spread the word to even more people. She can't contact their clients directly due to medical privacy laws, but she says they've reported distributing fact sheets and information about the waiver to thirty more people.

Chanda, age nine, before she was shot.

Anthony Camera

Fritz Haenel does physical therapy to help him stay strong and increase his mobility after a car accident left him paralyzed.

Details

See also:
- Photos: Chanda Hinton Leichtle is out to change how Medicaid treats spinal cord injuries
- Alternative therapies: Florida program similar to Colorado pilot saved money, improved health

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More About

• Medicaid
• Fritz Haenel
• Andi Leopoldus
• Spinal Cord Injuries
• Injuries and Traumas

Darryl Williams is one of them. Injured in a car accident in 1991 at the age of nineteen, the former football player spent the next ten years in bed. He lived in Tennessee at the time and says he didn't have the resources to do much else. "The only time I left the bed was for a doctor appointment," he says. But none of those doctors ever told him about alternative therapies.

He met Hinton Leichtle several years ago and was amazed by her stories. A friend offered to pay for Williams to visit an acupuncturist, and almost immediately, the forty-year-old felt relief from the pain in his left shoulder that had dogged him since his football days but was made excruciating by his injury. "I started feeling less tension," Williams says. "Before then, it hurt so bad that I thought I would have to be on pain meds for the rest of my life."

Acupuncture also helped cure his kidney stones, Williams says. He was scheduled to have surgery to remove seven stones that his doctors said he'd never be able to pass naturally when he started doing acupuncture. Six weeks later, he went in for a pre-operation X-ray to find that the stones were completely gone. The doctors couldn't believe it, he says. "They said, 'If it's working for you, keep doing it,'" Williams says. "To me, it seemed like a miracle."

Thanks to acupuncture and massage, which Williams occasionally pays for out of pocket, he's says he's healthy enough to work 25 hours a week as a receptionist. But while his friend has been generous, Williams himself doesn't earn enough to bankroll his therapies on his own. He lives in Denver and is eager to complete his enrollment in the pilot program.

"If I want to be independent," he says, "I have to do something to keep in shape."

******

Hinton Leichtle rolls up to a table at Fluid Coffee Bar in north Capitol Hill, where she's meeting Leopoldus to debrief her about her recent trip to Washington, D.C. It was part business, part pleasure. Hinton Leichtle visited museums and took a photo of herself next to the statue of FDR, preserved forever in stone in the wheelchair he used after he was paralyzed by polio.

But she also met with a D.C. lobbyist and with representatives from the office of Colorado congressman Ed Perlmutter about the possibility of taking the Medicaid waiver national. (She's also spoken to Representative Diana DeGette's office.) Perlmutter's people encouraged her to start building relationships with lawmakers and lobby groups, Hinton Leichtle reports, but they didn't give her the gung-ho green-light support she was hoping for.

Be patient, Leopoldus urges her. "They want to see if you're a flash in the pan." Leopoldus adds that while she knows that's not the case, Hinton Leichtle will have to prove it to everyone else. After all, Colorado's pilot program is just starting, and if she wants to make a play in Washington, she'll need to show positive results from pilots in at least three states.

"It's playing a game, and you have to know how to play the game," Leopoldus says. She advises Hinton Leichtle to start by building a base of supporters in Colorado and teaching them how to lobby their congresspeople when they're home.

Hinton Leichtle is listening carefully, sipping her iced green tea and taking notes on a chunky legal pad. The board of the Chanda Plan Foundation is interested in once again hiring a lobbyist, but is wary of farming the work out to D.C. "Hire Andi," she writes.

"And I don't know how — " Hinton Leichtle starts to say, no trace of whininess in her voice.

Leopoldus cuts her off. "Not at the federal level," she says. "You do at the state level."

"I always have such a big vision," Hinton Leichtle says.

And she potentially has a lot of people watching her.

Naomi Kleitman, a program director at the National Institute of Neurological Disorders and Stroke, which is a part of the National Institutes of Health, says pilot programs are crucial to changing modern medicine. Most of the recent studies about alternative therapies have come out of Asia, she says, where methods like acupuncture have been practiced for thousands of years. But while many conclude that the therapies show promise, their sample size has been small and their conclusions mostly about how more studies are needed. "We can't go from a very small study to saying this should work for everyone," she explains.