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

At the moment, Chanda Hinton Leichtle's back resembles that of a stegosaurus.

Thin stainless-steel needles stand sentry on either side of her spine as she lies on a padded table facing the wall. It's a position the small, feisty thirty-year-old can't get into on her own: When she was nine, a teenage boy accidentally shot her, severing her spinal cord and paralyzing her below the chest. To get her here, her acupuncturist lifts her from her wheelchair and carries her, like a bride over a threshold. He props a pillow between her legs, hikes up her red Nebraska 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.

See also: Photos: Chanda Hinton Leichtle is out to change how Medicaid treats spinal cord injuries

Hinton Leichtle is quiet. A heat lamp bathes her face in warmth, and soothing music plays on a stereo. It's a sharp contrast to the way she rolled in, upbeat and joking, her iPhone in one hand and a pair of white earbuds snaked around her neck. Soon after acupuncturist Stephen Corsale took a seat on a cream-colored exercise ball to ask her how she's been, Hinton Leichtle was multi-tasking, answering his questions and text-messaging at the same time. The texts, like much of what Hinton Leichtle does, are work-related. But for her, work is personal: She's on a mission to change the way modern medicine treats people with disabilities, and the texts inform her there's been another snag, another misunderstanding she has to sort out.

"Any bodily pains?" Corsale asks her.

"No," Hinton Leichtle answers. "I'm doing really good."

"We'll do a little de-irritating, then," he says.

"De-irritating," she says, smiling. "Yeah, let's do that."

For the past seven years, Hinton Leichtle has been fighting — as the director of her own nonprofit, the Chanda Plan Foundation — to provide massage, adaptive yoga, chiropractic services and other alternative therapies to people with physical disabilities.

Although the medical field has been slow to research its benefits, there's plenty of anecdotal evidence to show that alternative medicine keeps people with disabilities healthier and out of the hospital. In 2005, two years after Hinton Leichtle discovered acupuncture following her own emergency hospital stay, she founded the Chanda Plan, which raises money to pay for alternative therapies for people with spinal cord injuries, cerebral palsy, muscular dystrophy, multiple sclerosis and spina bifida whose insurance companies don't pay for them. (Most don't.)

But that wasn't enough. So in 2008, she took her fight to the State Capitol, pushing for legislation to create a unique pilot program that would allow Medicaid to pay for certain alternative therapies for people with spinal cord injuries. The bill was vetoed due to funding issues, but Hinton Leichtle convinced lawmakers to run it again the next year, this time with the promise that her foundation would raise the seed money. It passed, and she's spent three years getting it up and running, a process full of bureaucratic tangles and setbacks.

The program is now on the cusp of starting, and for Hinton Leichtle, the morning acupuncture session is a break from her role as chief architect, problem solver and champion.

"There's some activity there, but we're trying to get more activation," Corsale explains as he works one of the tiny, flexible needles into a key pressure point. In addition to relieving pain and stress, acupuncture helps kick-start activity in Hinton Leichtle's kidneys, bladder and uterus — organs that function more sluggishly than normal because of her injury. Though the needles can sting a bit, Hinton Leichtle prefers them to the noxious drugs she took previously to treat the chronic aches, spasms and infections that come with having a spinal cord injury.

"It's just a totally different atmosphere when you go to a physician's office than here," she says, her voice growing drowsy. "I would rather do this than just take medication."

And if she has her way, she and the quarter-million people in the United States living with spinal cord injuries — many who were hurt while they were young — will have that option.

******

The summer before fourth grade, Hinton Leichtle spent a week with family friends while her own family moved from Grand Island, Nebraska, to the town of Cairo. The family friends had a son and a daughter, and the day before Hinton Leichtle's stay was up, the mother took the daughter to an appointment, leaving her fourteen-year-old son and his friend to babysit their nine-year-old guest.

The boys spent the August afternoon target shooting, a common pastime in their rural town. After a while, they went inside to take a break and eat popsicles. When Hinton Leichtle said she wanted one, too, they teased her. You can have a popsicle, they said, but not a red one. Hinton Leichtle obeyed at first, choosing purple. But the stubborn blue-eyed blonde wasn't going to let them win; when they weren't looking, she swapped the purple for a red. That's when the son of the family made a joke that changed her life forever. "He's like, 'Let's just shoot her so we don't have to worry about her taking our popsicles,'" she recalls.

The boys thought the .22 rifle was unloaded. They thought it was funny, even as the son's fourteen-year-old friend playfully trained the gun on Hinton Leichtle where she sat on a high-backed bar stool in the kitchen. She remembers all but maybe thirty seconds of what happened next: He pulled the trigger. A single bullet pierced the back of her neck. It mushroomed into about fifty flecks of metal, one of which burst through the left side of her neck and hit the wall. Another narrowly missed her jugular vein. Her head flopped back as if she were looking at the ceiling.

"My body was instantly paralyzed," Hinton Leichtle says. "There was no pain because the bullet was so fast and severed my spinal cord so quickly." The boys ran to her.

Whenever Hinton Leichtle tells this story, she pauses to explain that nothing the boys did that day was malicious or planned. The teasing was innocent, the shooting an accident. The son of the family "never intended for those words to manifest into an action," she says, "but I think there's a really great lesson in how powerful our words can be."

At nine, Hinton Leichtle didn't know the meaning of the word "paralyzed." She knew she was shot and that she couldn't move, and she asked the boys to carry her to the couch. Mimicking something he'd learned in first-aid class, the son fetched an ice cube. Starting at Hinton Leichtle's feet, he traced her body with the ice, asking if she could feel it. "It was almost like he and I were on this mission together," she says. "He was hoping that every time he placed it somewhere, my answer was going to be yes." It wasn't — not until he reached her cheek.

Hinton Leichtle was airlifted to Omaha and spent three weeks at a children's hospital. From there, she was transferred to a rehab hospital, where she learned how to use a wheelchair and did physical therapy. The therapists stretched her immobile legs and helped her retrain the muscles in her arms that still worked. "Progression was super, super slow," she says. "What the insurance expected, I think, was for me to walk again." When that didn't happen, the insurance company decided she'd plateaued and stopped paying for the therapy.

"At nine years old, it was already determined by the medical model...that movement doesn't happen because you're paralyzed, but it also doesn't happen because you have to pay to move," she says. "That's a weird concept: The only way I get to move daily is if I pay for it."

But her insurance didn't hesitate to pay for the medications doctors prescribed to treat the ailments that accompanied her paralysis. She took pills to help with her diminished bowel function and to treat urinary-tract infections, a common occurrence in people with spinal cord injuries. Different pills stopped her muscles from spasming, and when she was thirteen, she had surgery to correct the scoliosis she developed from not having the muscles to sit up straight.

Aside from her disability, Hinton Leichtle was a regular kid. She had lots of friends, learned to drive an adaptive van, went to prom and was crowned homecoming queen. "We went to this really small school out in the country," says Hinton Leichtle's sister, Crystal Hinton, who's four years older. "People just really supported her and took her in so well.... She was really nurtured even though she had a disability."

After high school, Hinton Leichtle came to Colorado to attend the University of Denver. Crystal was already living here, and the two moved to a wheelchair-accessible condo together. Independent from her parents for the first time, Hinton Leichtle was eligible for Medicaid, a government program that provides health insurance to low-income families and people with disabilities. Things were good for a while; Medicaid picked up the cost of her medications and paid for a home health-care attendant to help her with dressing and bathing.

But at 21, Hinton Leichtle started experiencing chronic pain, another so-called secondary condition that can afflict people with spinal cord injuries. It came in episodes that would start at her feet and slowly creep up to her chest, burning and intensifying until it was hard for her to breathe. "I almost felt like I was being squeezed by a boa constrictor," she says.

The doctors prescribed Percocet to numb the pain, but the episodes grew worse, and soon Hinton Leichtle was taking four high-dose narcotic painkillers a day. The medication began eating away at the lining of her stomach, so that whatever she ate felt like fire in her belly. Her weight plummeted to 59 pounds, and she became too weak to go to class.

In September 2003, her sister came home from an extended yoga training session to find Hinton Leichtle in bed, unable to move without searing pain. Crystal called their mother, who called the Nebraska doctor who'd cared for Hinton Leichtle since she was a child. At that weight, he told them, her heart is working overtime. He suggested they drive her the six hours to her home town in Nebraska and admit her to the hospital.

"I don't remember the first week that I was there," Hinton Leichtle says. "It was almost like I was in a huge detox." Doctors surgically inserted a feeding tube and gave her more medications to treat the side effects of the narcotics, which had slowed some of her organs to a near-stop. "I went to this place to bring me back to life," Hinton Leichtle says. But even then she realized that her life had been saved by the same type of medicine that almost killed her.

When Hinton Leichtle started to improve, her family held a meeting. "We started having conversations about, 'What's going to be the plan so we're not back in this situation?'" she recalls. That's when Crystal, who'd been studying yoga and politely preaching about the body's ability to heal itself, spoke up. What about trying alternative therapies? she asked.

"I was going off this intuitive feeling I had," Crystal says now. "I was like, 'Why isn't she getting more physical therapy? Why isn't she getting daily movement and different nutrition?' Acupuncture is huge for people with spinal cord injuries. It helps to stimulate their energy. There are 72,000 paths of energy in your body. When you sit in a stagnant posture, they get a little dim."

Hinton Leichtle had her first acupuncture treatment in early 2004, shortly after she was discharged from the hospital. "For the first time in three years, I had no pain," she says. "I had this idea of, 'Oh, my God, is this just in my head?' And then I stopped myself and I'm like, 'Oh, my goodness, if it is just in my head, I don't give a shit. I don't have any pain right now.'"

The acupuncture had no side effects, and after several sessions, the chronic pain episodes stopped altogether. Hinton Leichtle was charging the acupuncture to her credit card, and in mid-2004, she did the math and called Medicaid. At that point, she hadn't taken an ambulance to the ER or been admitted to a hospital in six months.

"My argument was, 'Hey, if you were to pull my claims...you're going to see a significant drop,'" she says. "Their answer was, 'Well, we don't fund alternative therapies.'" Frustrated, Hinton Leichtle asked to speak with a supervisor. The woman on the phone explained that it wasn't her supervisor's decision.

"She said to me, 'It's our legislative body that makes those decisions.'"

******

The year 2005 was a big one for Hinton Leichtle. She graduated from the University of Denver, won the Miss Wheelchair Colorado competition and met her husband, Paul Leichtle, at a fundraiser for an organization that helps athletes with disabilities. Paul races road bikes and was there in support of a friend and fellow cyclist who was hit by a car and paralyzed. Hinton Leichtle had come in her capacity as Miss Wheelchair (she wasn't wearing a tiara or sash, she points out), and the two started talking. That year, she also founded the Chanda Plan Foundation and was introduced to Andi Leopoldus, a Colorado lobbyist who built her practice advocating for people with developmental disabilities and kids in the foster-care system.

Leopoldus describes Hinton Leichtle as a natural when it comes to politics, despite her initial naiveté. "You can spot the naturals really quickly because they're comfortable and not intimidated by the process," Leopoldus says. "And that would be Chanda."

Hinton Leichtle had two goals. Long-term, her sights were set on convincing Medicaid to see it her way. But in the meantime, she decided to start a foundation to help people who were suffering at the moment. "I was in a place where I was feeling really good, and I started to...picture people in acute episodes — bed-bound, depressed, isolated — and they can't wait for the law to be changed," Hinton Leichtle says. "They need services now, and if we can start a nonprofit and raise money, we can touch some of those people."

Smart, likable and passionate, Hinton Leichtle is, above all else, determined. But there's a joyfulness about her doggedness. She laughs often, and when she does, she throws her head back and opens her mouth wide, scrunching her pretty face. She loves the outdoors and owns both a handcycle — a bicycle operated by hand cranks — and a ski bucket for adaptive skiing. Her nights and weekends are filled with dinner parties, drinks with friends and, before she was married, trips to the Stampede country bar for ladies' night. She gets asked often about her sex life and isn't shy about answering. "We totally have sex," she says of herself and her husband. They've even given talks to newly injured people about sex after injury.

Hinton Leichtle also has a knack for finding the right people to help her achieve her goals. "I met Chanda at a birthday party of a friend," says Virginia Carducci, the director of rehab and behavioral health services at Boulder Community Hospital and the Chanda Plan's current board chair. "She sat beside me and looked over at me and said, 'I have to have you in my life.'"

"I have to say, it was one of the most wonderful things I've done in my life," Carducci says of her involvement, adding that the foundation's goal made sense. "When individuals have access to integrative care, they become more personally responsible for their care. They're not dependent on the hospital emergency-room system to take care of them. They're thinking about, 'What is going to work for me? What makes me feel better?'"

It took more than a year for Fritz Haenel to answer those questions. In March 2010, the now-39-year-old tattoo artist and machinist was a passenger in a friend's truck that was cut off by another car on the highway. The friend slammed on his brakes but lost control of the truck, which rolled three times. Haenel was thrown onto the median, which caused him to fracture a vertebra below his belly button, paralyzing him from the waist down.

He spent two months at Craig Hospital in Englewood, one of the nation's top rehabilitation hospitals. When he left, he says, he had prescriptions for a regimen of pain pills but no direction. He spent his days in bed, growing weaker and thinner until he weighed just 130 pounds and couldn't sit up on his own. The free spirit who loved to snowboard, worked with fire and steel, belonged to a badass biker club and had a skull tattoo on his neck was wasting away.

That December, Haenel heard about the SCI Recovery Project, a nonprofit gym that employs specialized trainers and adapted equipment to help people with spinal cord injuries stay strong. Even though it cost nearly twice as much as their mortgage, Haenel and his wife, Meghan, decided to try it. "We can't afford it," Meghan says, "but we can't afford not to."

The results have been dramatic. Small tasks — like putting on socks or taking off his shirt — that were impossible for Haenel before are no longer a problem. He can hoist himself in and out of his wheelchair, which isn't motorized, and he built a customized trike that he can drive with his hands. (It has a rack for his wheelchair on the back.) Most important, he feels well enough to work. He and his wife rent a warehouse in west Denver that serves as the laboratory for Haenel's new business: Big Gimpin' Choppers, custom-built adaptive bikes and hot rods.

"I did not die in that car crash, man," he says often.

But money is tight, so Haenel applied successfully for funding from the Chanda Plan Foundation after hearing about it from a friend at the SCI Recovery Project. "For the past three months," Haenel says, "I've been healthy because Chanda helped me to be healthy." His funding runs out at the end of October, and the nonprofit's rules dictate that he'll have to wait a while before applying again. Until then, he and his wife will dip into the pot of donated money they keep just in case. They hold a big fundraiser every March and maintain a website where people can donate. Instead of buying Haenel a beer at the bar, they encourage his buddies to throw in a few dollars for his workouts.

The Chanda Plan's annual budget is $250,000 and funds alternative therapies for about twenty people per year. "We could serve thousands and thousands of people," Hinton Leichtle says, "but we prefer to focus on providing thousands and thousands of treatments for a smaller number of people because we can be more impactful." But she recognizes that the need is greater than what the foundation can provide, which is why she asked Leopoldus for help.

Together they came up with a plan that would establish a pilot program, and Leopoldus found two sponsors: Senator Suzanne Williams and Representative Nancy Todd, both of Aurora, who were inspired by Hinton Leichtle's story. "Some of the things we talk about with legislation, oftentimes it becomes just a bill," Todd says. "But this became a life-changer."

Medicaid does not normally fund alternative therapies, also known as integrative therapies. Instead, it pays for traditional health care with a mix of federal and state money. Each state manages its own Medicaid program and can ask the feds for what are called "waivers," which allow states to test new ways of delivering health-care services. That's exactly what Hinton Leichtle is aiming to do with the alternative-therapies pilot program. It's an innovative idea she says isn't being carried out anywhere else in the United States. Florida had a somewhat similar pilot program for several years, but it ended in 2010. The Centers for Medicare and Medicaid Services declined to comment about whether Colorado's program is the first of its kind.

When they introduced the bill in 2008, Hinton Leichtle gathered doctors — including her own — along with several people with spinal cord injuries and their families, to testify.

"Until I got regular massage four years ago, I had pain in my shoulders," Jason Regier, who is quadriplegic, told the House Health and Human Services Committee. "Now I do twice the activities and I'm pain-free." Regier was paralyzed from the neck down in a car accident in 1996. A lifelong athlete, he soon discovered wheelchair rugby, a full-contact sport played on a basketball-sized court, and went on to make the Paralympic team, winning a gold medal in 2008 and a bronze in 2012. Back in 2008, he told lawmakers, acupuncture helped wean him off his muscle-spasm medication, and chiropractic cured a near-fusion of his sacrum, the triangular bone at the bottom of the spinal cord, which doctors thought was permanently damaged.

Lawmakers were receptive, but some thought the bill was too broad for a pilot. They amended it to narrow the program to allow only people with a spinal cord injury — not all disabilities, as originally proposed — to receive three specific treatments: acupuncture, massage and chiropractic. The pilot would be limited to 67 people who live in five counties: Denver, Adams, Arapahoe, Douglas and Jefferson. An independent evaluator would track their progress and document whether the program was saving money and improving participants' health. At the end of three years, state health-care policy officials would recommend whether to continue it or not.

The bill passed both houses and was sent to then-governor Bill Ritter in May. He vetoed it in June. In a letter outlining his reasons, Ritter said that putting in place a pilot program "would be a major undertaking" and noted that lawmakers failed to include money in the state budget to do so. In Colorado, Medicaid is funded jointly by the federal government and the state.

Hinton Leichtle was frustrated. She'd intended for the pilot program to be funded by gifts, grants and donations, and somehow that language was cut out of the bill. But Todd and Williams weren't deterred. After consulting with Ritter, they reintroduced the bill the following year with the needed language intact. It sailed through the legislature, and on June 2, 2009, Ritter signed it into law.

The bill specified that the three-year pilot program was to begin no later than January 1, 2012.

******

Hinton Leichtle is zipping down Highway 36 in her beige Honda Odyssey minivan, which is retrofitted to allow her to operate the gas and the brakes with a joystick. A touch panel mounted to her left has a button that puts the car in reverse; when it does, a screen embedded in the dashboard shows the view captured by a backup camera. A three-pronged grip on the steering wheel makes it possible for her to use her entire forearm, not just her hand, to turn the wheel.

"Okay, so here's the deal," she says. She's talking on her cell phone to a man whose case manager erroneously told him he wasn't eligible to enroll in the pilot program. "What she told you — there's a piece of it that's correct and a piece of it that's incorrect."

The client lives in Douglas County, which makes him eligible. But his case manager told him he wasn't because there are no participating acupuncturists or massage therapists in his county. That's true; to access the services, he'll have to drive to Denver.

"The process should be seamless," Hinton Leichtle says of transferring from his current Medicaid benefit plan to the pilot program. "But right now, I'm finding out that's not the case."

Ritter's warning that implementing a pilot program would be a major undertaking turned out to be correct. To do it, the state Department of Health Care Policy and Financing, or HCPF (pronounced "hick-puff"), had to ask the federal Centers for Medicare and Medicaid Services to approve a new Medicaid waiver for the 67 participants.

Though the bill was passed in mid-2009, that process didn't get started in earnest for more than a year, Hinton Leichtle says. There were some early delays that she attributes to poor staffing decisions at HCPF. "It got to a point where it was very, very frustrating because we were sending in money, but nothing was happening," she says.

The Chanda Plan vowed to raise $150,000 to pay for HCPF staff to write and submit the waiver, among other administrative costs. That $150,000 was matched by federal funds for a grand total of $300,000. "I was so scared that it was going to die," Hinton Leichtle says of the waiver. "I wasn't about to have that happen after we'd already gotten 150 grand into it."

Lawmakers Todd and Williams shared her concerns and facilitated a meeting in mid-2011 among themselves, Hinton Leichtle, HCPF and Governor John Hickenlooper's office.

"The department was not acting," Williams says. "What we encountered...was a lot of changes: changes of the department head, changes of deputies, changes of who knows the best and who's going to carry the ball into the waiver process." But several of those changes turned out to be good. The new HCPF director, Sue Birch, got the process back on track. "In this last change of directorship, it really started to happen," Williams says.

But by then it was too late to meet the January 1 implementation date. Hinton Leichtle got reassurance that the program could still go forward, even with the blown deadline, and the Centers for Medicare and Medicaid Services approved the waiver in June 2012.

Of the delays, HCPF spokesman Marc Williams explains that there's a lot of "homework that needs to be done" to submit an application, including presenting research on whether the waiver will be effective and save money. Colorado currently has twelve waivers. "There are always challenges of varying kinds," he says. "I'm not real clear on whether this was different."

With the waiver in place, Hinton Leichtle looked to hire an independent evaluator and recruit therapy providers who were willing to accept Medicaid. She approached clinics that could employ a supervising physician to evaluate patients and decide what therapies might be beneficial — a requirement of the waiver — and that already had acupuncturists, massage therapists and chiropractors on staff. It was a tall order, but the Progressive Health Center, a non-profit clinic, on the Swedish Medical Center campus in Englewood, fit the bill.

"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.

Kleitman hadn't heard of Colorado's pilot. But, she says, "it would be great if someone could show that [alternative therapies] reliably work or reliably work in certain people, so they could be sent in that direction. If, in this pilot, somebody is keeping track of how things work and doing it carefully, in an unbiased way, it could be a whole additional benefit....That's where you have the chance to build from a pilot into something that can be standardized and used with confidence."

Hinton Leichtle would like nothing more than for that to happen. Though she herself won't participate in the pilot program — she doesn't want to take a spot, and she's afraid she'd skew the results because she's already convinced that alternative therapies work — she's motivated by the thought that others with spinal cord injuries will come to the same conclusion.

"This is for them," she says.

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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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