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May 21-27, 2009

Desperate measures
Once an Olympic athlete, Beth Coats hopes a
controversial stem-cell treatment in India can help her walk again
by Jimy Valenti

Two Dobermans pull a woman’s wheelchair like a chariot into Boulder’s Performance Bicycle where she begins pumping air into her wheelchair’s tires.  The Dobermans lie sleepily beside her, eyeing their owner, while a clerk comes around the counter to help pump.

“Have you ever heard of Beth Coats?” she asks.

“No,” the clerk says.

“That’s me,” she says, struggling to work the pump with one hand and hold her wheelchair in place with the other. “Used to be a professional mountain biker.”

The bicycle clerk smiles and pumps up her tires, happy to help someone who once stood atop the business he makes change for.

“Come on Magda! Let’s go Ashtrid!” Beth says.

The Dobermans, acting as service dogs and companions, leap up from their slumber and sprint out the door taking her along for the ride.
•  •  •

In 1998 Beth Coats, a two-time Olympic athlete and professional mountain biker, fell 35 feet while rock climbing in Eldorado Canyon State Park, five miles southwest of Boulder. Now 43, Beth is paralyzed from the navel down. After 11 years battling chronic pain and enduring daily limitations in her wheelchair, she wants desperately to undergo experimental embryonic stem-cell therapy that isn’t yet available in the United States.

The FDA has only granted one company in the United States permission to start testing the use of stem cells in a clinical setting, but Beth believes embryonic stem cell therapy is her only chance to wiggle her toes in the sand, have an orgasm or maybe even walk. And she’s willing to travel to India to try it.
•  •  •

Beth never dreamed of becoming an Olympic athlete. Her athletic career was unexpected, but also natural.

“I thought I was going to live in Albuquerque and be a real estate agent,” Beth says.

Gymnastics was her first athletic pursuit. But by the time Beth had entered high school, gymnastics had lost its charm. She envied the other kids playing outside. She was sick of constant practices in stuffy industrial gymnasiums, so she joined the cross-country team and began alpine skiing, making occasional trips to Colorado. 

Western State College in Gunnison gave Beth her escape from Albuquerque. There she immediately excelled in cross-country skiing. She was an all-American her first year in the sport.

She eventually combined cross-country skiing with marksmanship in the biathlon the following year. In 1992, she made the first women’s U.S. Olympic Biathlon Team. Beth also competed in the 1994 Winter Olympics. The United States didn’t medal either time.

In 1994, Beth gave up biathlons and decided to race mountain bikes. She says bike racing was special to her because she did it all on her own. She was her own manager. She raced for KHS Bicycles, but she still handled her own logistics. In bike racing, she had strong support from friends and sponsors.

“All these people kept building up my self-esteem,” she says. “I felt much better about myself, much more confident in myself through bike racing than the Olympics. I didn’t feel appreciated in biathlons. We sucked. ”

Len Pettyjohn, a prominent mountain bike promoter in Boulder, organized races in which Beth competed. Pettyjohn says Beth was riding elbow to elbow with the best in the world with only a year or two of experience mountain biking.

“Beth was an enormously confident, no-limits woman,” Pettyjohn says. “It was a delight to have her around. No fear, no limits, no restriction — she was full gas all the time.” 

Beth’s best race was a fourth-place finish in the 1997 mountain biking world cup at Mount Snow, Vt., but her proudest moment came during a race from which she was disqualified. Pettyjohn organized the 1997 Mercury Tour mountain bike stage race in Steamboat, Colo.

Climbing the face of Mt. Warner, Beth pulled away from world champion Alison Dunlap. Pettyjohn says it was an eye-opener for everybody. He says he believed Beth would be world champion within the year.

Beth flew minutes ahead of Dunlap, but then flatted out. At the time mountain bike racers had to be self-sufficient, so when Beth found a tube to fix her flat tire at 10,000 feet she was disqualified. The next day, Beth blew the field away. It didn’t count, however, and she missed out on $8,000.

“I didn’t care I was disqualified,” Beth says. “I knew in my head what an awesome racer I was.”

1n 1998, Beth says she felt close to the pinnacle of her athletic career. She competed in two races that season. The second was in Monterey, Calif., where Mountain Bike Magazine published an article declaring her the next Juli Furtado, a prominent women’s mountain bike world champion.

“I felt awesome,” Beth says. “I was on my way up. I was going to be a summer and winter Olympic athlete. I was going to be an all-American girl, an all-American athlete.”

The following weekend, mountain biking’s world championship was to be held in Napa Valley, Calif. Most racers traveled to Napa Valley a week early, but Beth decided to come to Boulder to spend the week road biking and rock climbing, her newfound joy.

“And that was the biggest mistake I’ve ever made,” Beth says.  

Beth discovered rock climbing only a few years prior. Pettyjohn says that immediately she was excelling at difficult climbs.

“Most people who do stuff like that there is sort of a fear factor, but for her it was like a game,” Pettyjohn says. “It was another puzzle to solve, and she would master it in a matter of days or months.”

On March 24, 1998, she finished her favorite road ride, a grueling 100-miler beginning in Longmont, ascending the Big Thompson Canyon to Estes Park and then back down through Lyons. The following day she climbed the Bastille in Eldorado Canyon joined by journalist and well-known climber Pete Takeda. 

Beth does not remember what happened on March 25. Takeda wrote an account of the day for Climbing Magazine saying that after scaling the Bastille, Beth down-climbed a section of rock, rather than traversing around a wide ledge.

Beth says she would never have down-climbed because down-climbing frightened her. But Takeda remembers thinking her down-climb was dangerous and wanting to call out to her, but her left handhold broke away. Takeda has written that his silence at that moment still bothers him.

Beth fell 35 feet. The fall fractured her left shoulder, broke her left arm and fractured vertebrae in her upper and lower back. She was unconscious and hardly breathing when Takeda approached her.

Then her breathing stopped.

Takeda revived her, and eventually Beth was rescued and taken to the hospital.

In August 1999, Takeda wrote for Climbing Magazine: “When Beth was carted away it was as if someone had taken my passion and reduced it to mere frivolity, a game of petulant children.”

“She was one of those superb athletes that could do anything,” Pettyjohn says. “And that was what probably led to her demise — the fact that she was so good she got in over her head.”
•  •  •

Beth’s memory of the following weeks is constructed by friends and family members, who piece it together for her.  She remembers at first everybody being there for her. She remembers her boyfriend of four years telling her everything was going to be OK and promising he wouldn’t leave her.

Two weeks later, he was gone. When he left, her boyfriend reportedly told her mother he only promised to stay because he was afraid Beth might kill herself.

“Why would I fucking kill myself?” Beth asks, her voice trembling. “I love life. I love it. I want as much out of life as possible.” 

Her boyfriend was only the first person close to her to distance himself as her long recovery began. Slowly months passed, and Beth felt totally alone.

“I felt like a child who has been abandoned by a parent,” Beth says. 

She spent almost three months at Craig Hospital, a rehabilitation center in Denver for people with spinal cord injuries. Beth describes her time there as horrid.

“All I could think for those months at Craig was, ‘Get me the fuck out of here,’” Beth says.

She regularly tried to escape the hospital. She told nurses she wanted fresh air but then went to the grocery store or to local coffee shops for hours before returning. At Craig, Beth says she was distracted from her reality. She was so focused on hating her surroundings, so focused on getting out that she rarely thought about what life would be like. An Olympian, professional mountain biker and gifted athlete, Beth says she didn’t have a chance to come to grips with what had happened to her.

“No one would let me grieve,” she says.

Every time she became upset about her climbing accident, people around her told her everything would be OK. Beth says nobody wanted to see her cry. Finally, in the summer of 2003, Beth decided to face her grief. She spent that whole summer in a state of bereavement, rarely leaving the house except for occasional trips to the grocery store.

“I couldn’t keep putting it off,” Beth says. “My family didn’t want to see me crying, hurting.”

Only a year and a half after her fall Beth went rock climbing again. Her friends Russ Mitrovich and Steph Davis helped her to become the second paraplegic and first female paraplegic to scale the Zodiac route on Yosemite’s El Capitan (see sidebar). With the use of a custom harness and leg protector, Beth could pull herself up 8 to 10 inches each pull. She completed more than 5,000 pull-ups before reaching the top in five days.

“I was wrecked,” Beth says. “I was in so much pain.”

Beth eventually accepted her wheelchair. She accepted her limitations. She began doing Doberman rescue, where she got her two dogs, Magda and Ashtrid. She rides her mono-ski, her cross-country sit ski, four-wheeler and hand-cycle. Her favorite activity is swimming.

“I feel free in the water,” Beth says.

But last January Beth heard of a radical new procedure that claims to help people with spinal cord injuries. The procedure has stirred up old emotions in Beth, who now believes life can be even better. She says she believes experimental embryonic stem cell therapy is her last hope to walk again, or at least help her chronic pain.

“If this therapy could bring me a better quality of life than living on pain killers all the time, if I can stand up, just stand with a walker, wiggle my toes in the sand,” Beth says. “Or look my twin sister in the eye. Oh, God!”

Dr. Geeta Shroff performs embryonic stem cell therapy in Delhi, India. Shroff sits front and center amid a controversial international monsoon in the medical and spinal cord injury communities.

“She is a fraud,” says Dr. Curt Freed, professor and division head of Clinical Pharmacology and Toxicology at CU-Denver. “I know of no place in the world that these transplants are not frauds.”

According to Beth, her neurosurgeon at the time of the accident, Dr. Joseph Dilustro, has suggested she go through with the experimental procedure. Beth says he offered to travel with her for the first week of the therapy.

Dilustro declined to comment for this story.

Brad Olwin, a professor of biology at the University of Colorado-Boulder, says there has not been enough research to use embryonic stem cells in clinical therapies.

“They’re not ready,” says Olwin, “Nowhere near ready.” 

Getting embryonic stem cells to transform to other cell types, according to Olwin, is the biggest challenge facing the field today. He says we can make embryonic stem cells, but convincing them to transform into other tissue is not understood. 

“If we just put stem cells under your skin, they would grow into a monstrous ball of cells the size of a grape fruit or larger,” Freed says.

“It would have bone in it and hair and skin.”

In order for embryonic stem cells to be useful, they must be converted into a specific kind of cell to treat a specific kind of disease.

Freed says that no one in the world is prepared to put embryonic stem cells in a person to treat a disease. 

Geron Corporation may be the only exception. The company has begun testing stem cells converted into brain cells to treat spinal cord injuries. Clinical trials may still be years away. Testing on humans alone required a 20,000-page application to the FDA.

Shroff has never submitted a single page about her process to the medical community.

Olwin says the likelihood that Beth will have immunological issues with the transplanted stem cells is relatively high and that there is a lot of danger associated with this procedure.

“I’m very skeptical,” Olwin says. 

The medical community’s biggest problem with Shroff’s stem cell therapy is that nobody knows exactly how she reached medicine’s Holy Grail. Shroff says she didn’t want her methods stolen and was awaiting patents before publishing any details. Her work has since been patented and still no accounts of the procedure are available. Her only proof of success lies in clinical trials and personal testimonials.

Shroff claims to have successfully treated more than 300 patients using embryonic stem cell therapy which she developed, including Coloradan Amanda Boxtel, founder of Challenge Aspen, “a nonprofit offering cultural, competitive and educational experiences for individuals with mental or physical disabilities.”

In her blog, Boxtel lists numerous physical improvements, including improved leg, back and abdomen muscle power, 50 percent less pain, more energy and zero negative side effects.

Patients with motor-neuron disease, spinal-cord injuries and numerous other incurable diseases all say they have improved drastically after undergoing Shroff’s procedure. These public testimonials have led to a desperate international pilgrimage to her clinic. 

Freed says testimonials are not sufficient evidence that Shroff’s practice is legitimate. He says that unless her technique is observed in a controlled systematic way, her work doesn’t mean anything.  He equated her embryonic stem-cell therapy to hypnotism.

According to Freed, hypnotism is an interesting phenomenon, but a mental and not physical experience. Though some may feel physical manifestations, according to Freed, testimonials are usually selective.

“You don’t hear anyone saying, ‘Oh, my God, she nearly killed me,’” Freed says.  “This is the same as a testimonial in a Baptist church. People say, ‘I came in crippled, and I left throwing out my crutches.’ Well, isn’t that nice?”

Freed accuses Shroff of exploiting her patients’ despair.  But Beth disagrees.

“This isn’t something in South America where you sit in a steam room where they burn incense and do your chakra and shit,” she says.  “This is the real deal.”

With regard to Shroff’s critics, Beth says: “Fuck them. It makes me so mad. They’re not stuck here in a wheelchair. They don’t wake up every single morning alone. They don’t have their boyfriend of four years abandon them. They’re not alone. They don’t understand.”

Beth says that she wants people to spend 24 hours in a wheelchair, and then they will understand why having this procedure means so much to her. Beth says that the limitations she had once accepted are, in truth, nearly impossible to live with.

Dr. Laurance Johnston says he understands. Johnston is the director of Paralyzed Veterans of America and a regular contributor to Paraplegia News. He travels the world seeking out SCI treatments. Johnston strongly supports Shroff’s embryonic stem cell therapy.

Johnston says billions of dollars are directed worldwide to tap into the embryonic stem cell’s power. The huge profit potential leads him to believe that a diminutive Delhi clinic is likely to be dismissed rather than embraced by people with conflicting personal and economical interests. 

“History shows us scientific breakthroughs are frequently generated by innovators outside of the system,” he says. “Innovators not shackled to prevailing ideas or bound to prestigious biomedical institutions.”

Johnston traveled to Delhi, becoming the first American scientist to visit Shroff’s clinic and says he is confident her clinic — and her claims — are legitimate.

The major breakthrough, according to Johnston, is how Shroff obtains her embryonic stem cells. Scientists have had to grow cells in a layer of animal cells providing nutrients and needed signals that keep the embryonic stem cells from transforming.

Shroff discovered a method to grow embryonic stem cells without the use of animal tissue. This keeps the cells purely human. It is this process Shroff keeps secret. Johnston did not see it in detail.

“I am excited about its potential and suspect it will ultimately represent a big step toward the promised land of restored function,” says Johnston.
•  •  •

Magda, Beth’s 8-year-old black-and-tan Doberman, and Ashtrid, a light brown Doberman rescued from a Denver area puppy mill, pull Beth to Safeway after leaving Performance Bicycle. She grabs Oreos and a bottle of Odwalla Superfood, then gets in line.

“I’m so bad,” Beth says. “These Oreos are going to make me fat, but they’re just the best.” 

People stare. Some are frightened by her dogs, and others show them immediate deep affection.

“Five dollars and 49 cents,” the clerk says.

Beth reaches into her wallet and pulls out one of many credit cards. She swipes her card. A long line waits behind her.

“Uh, ma’am, sorry. The card is declined,” the clerk says.

Beth is not fazed. She pulls out a second card.

“Let’s try this one,” Beth says. “I’m stranded here waiting for my car to get fixed, and my hotel took everything I’ve got.”

The purchase goes through on the second credit card to Beth’s surprise. She lives off social security and food stamps. Her dream of seeing Dr. Shroff hangs on her ability to raise thousands of dollars. The estimated cost for treatment, including airfare, is $68,400.

Insurance won’t cover a penny.

“I want to go to India so bad!” Beth says. “I want my life back. I was an Olympian, an athlete. I was supposed to be the all-American girl, the all-American athlete. Now look at me.”

To contribute to the cost of Beth Coats’ treatment, make checks out to: NTAF Midwest/west SCI fund, and write “Beth Coats” on the memo line: Mail to: NTAF, 150 N. Radnor Chester Road, Suite F120, Radnor, PA, 19087. To make a donation by credit card, call 1-800-642-8399.

Scaling El Cap
From High Infatuation: A Climber’s Guide to Love and Gravity by Steph Davis (Mountaineers Books, 2007)

Mark Wellman pioneered paraplegic climbing 10 years ago when he climbed El Cap, and it is by no means a systemized type of climbing. My friend Timmy had let me tag along on his brother Sean O’Neill’s paraplegic ascent of Castleton Tower the year before, to help out and learn a few things along with them, but neither Russ nor Beth nor I had ever climbed in this style. At a certain point, you just have to start and see what happens.

As we climb, we discover that paraplegic climbing is all about creativity and unexpected glitches. For Russ and me, this El Cap trade route is turning out to be the most technical and demanding wall that either of us has ever been on. Everything has to be done right, with no shortcuts, and in a much more controlled manner than we would normally use. We have to rethink our rope management minutely and rig things to make sure Beth doesn’t get stopped by any sort of gear cluster.

We quickly learn that it is not okay for Beth to scrape against the wall on less steep pitches, and we eventually get smart enough to just pull her rope out from the wall and use our bodies as sawhorses to make it hang free while she ascends. Russ and I take turns running extra trips up and down the rope, so that Beth leaves her portaledge to start jugging and then has it waiting for her at the next anchor. It’s crucial to make sure she is never hanging in her harness for too long, as that could cause damaging pressure points on her legs. Differences in injury levels that aren’t obvious to an outside observer make major differences in techniques and potential problems for a paraplegic climber. Beth has a very high level of injury, with only one functioning abdominal muscle. This alone adds extra effort for her on the wall, as she needs to pull and hold herself upright all the time on the portaledge. She also doesn’t have much circulation in her legs, so she is more susceptible to injury.

Beth’s harness was custom-sewn for her by friends in Moab, and she diligently practiced her jumar system on ski lift towers at home in Breckenridge before driving her hand-operated VW van out to the Valley. She has nicknamed her harness, essentially a haulbag sliced in half lengthwise, the “leg burrito.” She wears extra-wide leg loops inside it, along with a regular waist harness and a chest harness. To climb a rope, she pushes up her top jumar with a short pull-up bar attached to it, does a pull-up, and brings up the bottom jumar attached to her harness. When things are going right, she has an efficient rocking motion, leg burrito straight in front of her, gracefully bobbing through the air. On the Zodiac, we figure she will do about four thousand pull-ups. This might sound like an impossible task, if you didn’t know Beth.
—Reprinted with author’s permission
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