Those with spinal injuries brave risks to find new therapies overseas
McKINNEY – Two weeks after Tonya Winchester celebrated her high school graduation, an 18-wheeler slammed into her Jeep Cherokee, paralyzing the college-bound teenager from the chest down.
Therapists said she would not improve, and they advised her to work with what she had left.
Instead, she took the advice of fellow patients and searched for a medical miracle half a world away.
In March, she and her family flew to Russia, putting Ms. Winchester’s care in the hands of people they had never met at a cost of nearly $30,000. She believes the adult stem cell therapy, which involves injections not approved in the United States, will help heal her spinal cord and improve her mobility. She plans to return in July.
“I was scared, of course, but I’m going to do what I need to do to gain anything,” said Ms. Winchester, now 19.
“I had just graduated. I was ready for my independence. I feel like I was robbed completely of everything,” she said of the 2005 accident.
Medical tourism is a fast-growing phenomenon in the United States. As health costs skyrocket and 47 million remain uninsured, Americans are finding far cheaper hip replacements in India, bariatric surgery in Singapore and heart surgery in Thailand.
But others, especially spinal cord injury patients like Ms. Winchester, head overseas seeking new or alternative therapies that are often unapproved at home – and unproven – despite the risks.
What they see as a frustrating conservatism that hampers innovation in the United States, many experts view as necessary safeguards.
“I think we always try to err on the side of cautiousness,” said Jerry Silver, a researcher at the National Center for Regenerative Medicine in Ohio. Other countries lack oversight as well as proof of efficacy and safety that would be required in the United States, he said.
“They believe you can just use people as guinea pigs,” Dr. Silver said. If other countries truly had therapies that were proven to work, experts said, they would be done here. “It’s taking advantage of people that are at risk. I think it’s just terrible.”
But many spinal cord injury patients say alternative medical care abroad has improved their lives.
After he was paralyzed in a Texas Christian University football game more than 30 years ago, Kent Waldrep sought experimental treatment in the Soviet Union. Well-known U.S. medical authorities told him and his supporters before the trip that it was a foolish waste of time.
When he returned, Mr. Waldrep said, doctors who evaluated him said that the results were interesting and “pretty substantial” but that they wouldn’t last.
“Of course it not only lasted, but my physical situation is a lot better than it ever was supposed to be,” said Mr. Waldrep, 53, who continues to be a proponent of therapy abroad, as long as it is backed by reputable organizations.
“I have more movement. I have feeling all over my body. I had two kids I was never supposed to have,” he said. “My quality of life is what other spinal cord [injury patients] should have the opportunity to enjoy. I’m still in a wheelchair, but I’ve just been able to do so much more than the doctors [said].”
Though research and care today is leagues ahead of what was initially available to Mr. Waldrep, spinal cord injury patients remain frustrated that there are not more clinical trials and treatments available in the United States, he said.
“People search for answers. … They don’t want to hear, ‘Nothing is available. Go home and deal with your situation,’ ” he said.
‘She will walk again’
Nelda and Gerry Winchester didn’t know whether their daughter was alive as they battled early-morning traffic to get to Parkland Memorial Hospital in Dallas.
Mr. Winchester bounded out of the car before his wife could park.
Ms. Winchester, who was with friends and a passenger in her own car at the time of the accident, barely survived. She did not return home for nearly five months.
Early on, she could only shrug her shoulders. Doctors told the family that, with surgery, she would have use of her arms and wrists.
“They couldn’t guarantee anything else, and couldn’t guarantee she’d ever walk again,” Mrs. Winchester said. “We were totally distraught over this. We were saying, ‘She will walk again. You just don’t know.’ ”
But as she started Physical Therapy, Ms. Winchester had her doubts.
“I just thought I wouldn’t walk again they were so persistent about it.”
The family then learned from other patients about stem cells, and soon they had Russia in their sights.
Stem cells are the body’s building blocks. Scientists believe they can be coaxed to develop into specific cell types that can be used to replace damaged tissue and treat conditions such as diabetes, Parkinson’s disease and spinal cord injuries. Experiments with paralyzed mice have shown that stem cells can help them walk again.
But the science behind repairing spinal cord injuries is extremely complex, said Robert H. Miller of the National Center for Regenerative Medicine.
“Stem cell therapies are so powerful, but the cells can only do what the Environment tells them to do,” he said.
No evidence proves that simply injecting stem cells into a patient can heal the spinal cord, Dr. Miller said, and he worries that doing so would create more problems, including tumor growth.
Spinal cord injury patients are a close-knit network, thanks to Internet chat groups and message boards, said Dr. Steven Hinderer, medical director of the Center for Spinal Cord Injury Recovery at Rehabilitation Institute of Michigan.
About a third of the patients in his program have sought care abroad. He said the number has remained stable, though the countries that patients visit have varied. Many now are headed to Russia.
Dr. Hinderer said he does not endorse any procedure but keeps an open mind. He talks with patients about the risks and shares what information he has.
“People who are really negative about this whole thing will talk about how desperate [patients] are and anxious for recovery,” Dr. Hinderer said. “They’re also very well-informed.”
Still, patients do not always listen when he steers them from procedures that don’t offer much hope for improvement or that could be dangerous.
One patient traveled to Ecuador for surgery against his advice and died from complications.
“You’re dealing with people who have been told to expect nothing,” he said. “What do I really have to risk here, so why not?”
He said he has had patients whose conditions have worsened slightly but said many others have recorded improvements in sensations or circulation.
As Americans get more comfortable with the idea of going abroad for common surgeries to save money, more are seeking what they can’t find here in hopes of improving – or saving – their lives, said Stephanie Sulger, director of international medical services for Medical Tours International.
“It moves fast, this industry,” she said. Health providers abroad are eager to respond. “They think, ‘Look at all these sick, rich patients.’ ”
She said her business, which has grown from a dozen patients in 2002 to about 300 a year now, gets several calls a week about stem cell therapies. The vast majority of current patients are going abroad for surgeries approved in the United States, but she expects that to change over time.
Many surgeries and procedures abroad for spinal cord patients originate from animal studies, Dr. Silver said. He is skeptical about miracle cures abroad.
“There’s a huge placebo effect,” he said of spinal cord injury patients. “You can feel better because you want to.”
If therapies could be proven to work, he said, “there would be scientific meetings and validation published in peer-reviewed journals,” he said. “That’s the test. If there’s no peer review, we’re only left to listen to the word of the physicians and the hospitals. That, in our country, just doesn’t [pass] muster.”
Claude Vaughn, who lives in Little Elm, traveled to Portugal for a popular therapy that involves scraping cells from the inside of patients’ nasal cavities and injecting them in hopes of repairing injured spinal cords.
Mr. Vaughn was paralyzed from the chest down in 2002 when he broke his neck racing motocross. During Rehabilitation, he heard success stories, including one woman who “came back and immediately had some results,” he said. “She was able to start moving one of her legs.”
“Good Lord,” thought Mr. Vaughn, who has three young children. “I need to raise the money and go over there.”
He raised $47,000 and sought treatment in 2006.
Unfortunately, he suffered a setback. The procedure regulated his blood pressure, but he lost feeling he had in his legs and strength in his triceps.
“We knew right off the bat that it was experimental surgery,” Mr. Vaughn said. “If I had to do it again, knowing I would lose those things, I would not have done it.”
But, then again, the question would have remained. “I would have always said, ‘What if?’ ”
These days, he is raising money for exercise equipment to regain strength.
When other spinal cord injury patients ask him for advice, he tells them exactly what happened to him – but also shares the many success stories he’s heard.
Traci Bryan of Rowlett has been to Russia four times, at a cost of about $45,000. Credit cards and a loan helped fund the trips.
“You can’t put a price on your legs,” said Ms. Bryan, who is 30 and paralyzed from the chest down. She hopes to have enough money to return in September.
Her stem cell treatments, combined with vigorous daily workouts, have led to significant improvement, she said. “My strength is absolutely amazing.”
Dressing herself is easier, and she can drive. She has increased muscle tone, more movement in her hips and pelvis, and she can make “very, very small movements” with her legs.
“I expected to go over there and find something that I was not finding here, which was a little bit more hope,” she said.
Doctors there told her they expect she will stand up and take steps, something an American doctor has never said. She has seen it happen with other patients.
“I don’t want to get my hopes up, but I’m not losing faith.”
After the Winchesters began raising money for stem cell therapy abroad, Ms. Bryan’s mother, Carol, called the family and told them about the Moscow clinic.
They listened over the speakerphone as she told them about her daughter’s improvement.
“We were so excited,” Mrs. Winchester said. “She talked for an hour and we were in like tears of joy when we hung up.”
Doctors at the clinic recommend patients return every three to four months for two years for the therapy, which involves taking stem cells from patients on the first trip and injecting them into the back at every visit.
The Winchesters’ first trip included an awful plane ride, terrible food and nurses who didn’t speak much English.
But since returning home, Ms. Winchester said, she has had tingling sensations throughout her body, and increased feeling in her fingers and palms. She is pleased with her progress and completely trusts the clinic with her care. She said she met several people whose conditions had improved with treatment.
“I really don’t have expectations. I’m just going to let whatever happens happen and not worry about it. Because if I give myself expectations and I don’t get them, that’s just going to bring me down.”
Expectations aside, she still has hope.
“I don’t think I’ll be able to walk in two years,” she said. “I think it will take me a lot longer.”
By KIM BREEN / The Dallas Morning News