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"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.

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.

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9 comments
Corners
Corners

Hi Chanda, I appreciate all you are doing to try and help others with spinal cord injury. I have an L1-L2 level injury from an accident when I was sixteen years old. Today I am walking with crutches, but I have worked really hard in physical therapy for a lot of years to walk.You can learn more about my story: http://zinahermez.wordpress.com  I agree with you, and I have never been a fan of pain medication myself. 

patricia.calhoun
patricia.calhoun moderator editortopcommenter

we'd like to publish some of these comments in our print edition, ideally with the author's full name/town. If that's okay, e-mail me at patricia.calhoun@westword.com

notonmydime
notonmydime

Thanks Westword for alerting us to the use of the Medicaid waiver program to waste taxpayer money.

No one wants to say no to pretty victims of spinal cord injuries like Chandra, or self-motivated men like Mr. Haenel, so it is easy to see how the Chandra foundation has made progress. Sadly, its goals are clear--to get public money for unproven treatments.

 

Conventional medicine is based on scientific knowledge whereas alternative medicine is based on clinical or anecdotal evidence. We have an entire wing of National Institute of Health devoted to trying to prove that alternative therapies work (with little success, I add), and their website states: "there is insufficient evidence to draw definite conclusions about the effectiveness of acupuncture for acute low-back pain."

 

There are no control groups to this pilot program, and the medical person administering it is someone with a vested interest in the therapies offered. Proven treatments like physical therapy are lumped in with pseudo medicine, invalidating any objective demonstration of success that may come from the program. However popular these alternative therapies might be, we need to see evidence that they work.

 

I hope Colorado citizens and legislatures will thank the Chandra foundation for ironing out kinks in the Waiver program while demonstrating exactly how to suck scarce dollars from taxpayers in the name of the disabled. I also hope we demonstrate our thanks by showing poorly designed programs out the door, because our Medicaid patients deserve better.

 

kcm2us
kcm2us

gee Westword, could you make the lede to the story a little more lurid?

"carries her, like a bride over a threshold. He props a pillow between her legs, hikes up her redNebraska Huskers T-shirt, unwraps his sterile needles and taps them into the skin above where her black lace underwear peeks out from the top of her yoga pants."

 

kcm2us
kcm2us

Great! Will medicare start paying for my Budweiser? It kick-starts my kidneys, bladder and ureter and I prefer it to noxious drugs. 

cheryl.bianchi
cheryl.bianchi

this is fantastic news...now to get california to step up...thanks for your hard work

brendacombs
brendacombs

@notonmydime I certainly hope you never have a family member to suffer from a spinal cord injury and have only drugs with horrible side effects to deal with their health issues.  Please, where is your compassion?  Not all things are known and able to be proven by a medical system that will not listen to information that does not pad the pockets of  big pharma.  Is not the word of the patients any good for whether the alternative health care is working for them.  Would you rather pay for a surgery and and hospital bill with medicaid dollars than to pay for a few acupuncture treatments that takes care of the problem with no side effects?  Please open your mind and learn more about this issue before condemning disabled people to issues you can not begin to understand.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          

ybarcewski
ybarcewski

 @kcm2us I won't pay for you Bud but maybe it will pay for your rehab.

notonmydime
notonmydime

Medicaid and private insurance should both be paying for effective rehab, but this is a poorly designed program. We could just as well pay for toothpick based placebo treatment and point to its cost-effectiveness.

 
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