Foreign treatments ignite a different stem cell debate
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BY JOE DUGGAN / Lincoln Journal Star
OMAHA — Three therapists flock to the little boy as he walks into the clinic with a white cane.
But the young women aren’t in clinical mode when they first see Kasen Sipple.
They kneel close to greet the boy, asking him questions and tousling his soft, brown hair.
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Hope for Kasen
Journal Star reporter Joe Duggan and photojournalist Eric Gregory spent several months shadowing Kasen Sipple, a 6-year-old boy from Rulo who suffers from blindness, autism and a brain disorder. His family recently flew to China, where the boy will undergo a series of experimental stem cell treatments his parents pray will allow him to see. This three-part series explores a different kind of stem cell debate — the lengths parents will go to help a disabled child and the power of hope.
Sunday
The family
Despite his disabilities, Kasen has a good life, thanks to the dedication of his parents and the care he has received from medical professionals, therapists and his family.
Today
The debate
Kasen’s treatment uses a type of adult stem cell, which frees it from the ethical debate surrounding embryonic stem cells. But it’s still controversial. Learn why some of the same researchers who trumpet the potential of stem cells say foreign clinics perpetrate fraud by offering therapies now.
Tuesday
A therapy called hope
Medical and ethical debates take on a different dimension when you’re the parent of a disabled child. Amanda and Robbie Sipple show why they’re willing to spend a month in China, plus tens of thousands of dollars, for a treatment some experts say can’t work.
How to help
Send donations to the Kasen Sipple Stem Cell Fund, First National Bank and Trust, 1701 Stone St., Falls City, NE 68355.
You can learn more about Kasen’s treatments at his Web site, bignsite.com/angelsunaware
Kasen aims his face downward and rocks a bit in his tiny sneakers. He says nothing about the fuss.
He can’t see.
He has a brain disorder that messes up his hormones and slows his growth.
And he has autism, which makes communication difficult.
It would be easy to view the boy as locked in a mysterious world of darkness and silence.
But Kasen has shown he can learn. He understands language, he talks, and he makes himself understood nonverbally.
His parents, Robbie and Amanda Sipple of Rulo, think he can do even more if his sight improves. They’ve flown thousands of miles from their home near the Missouri River to a city in eastern China so Kasen can undergo a series of stem cell treatments — even though Western researchers say the treatments can’t possibly work.
The Sipples expect to spend about $65,000 for treatments, travel and aftercare.
Despite what scientists say, the parents believe stem cells will help their boy see and learn and ultimately have a more normal life.
But on a rainy April morning, the father and son have driven 100 miles from Rulo to Omaha for something different. They’ve come to spend a couple of hours at the Munroe-Meyer Institute for Genetics and Rehabilitation, a clinic at the University of Nebraska Medical Center that treats kids with behavioral disorders.
The parents sought the clinic’s help to manage their son’s extreme tantrums.
The meltdowns started almost two years ago, about the time their second son, Kamden, turned 18 months. The mere sound of the little brother’s voice tripped explosions — screams, tears and a paroxysm of self-inflicted hitting, slapping and biting. Sometimes Kasen even yanked out the feeding tube that had been inserted through his abdomen. The episodes could last hours.
The parents had to separate the boys. Whenever they left the house, they took two vehicles, and they maintained a safe bubble between the brothers at birthday parties or holidays with extended family. They hired two baby sitters whenever they had to leave the boys at home.
“We felt like we weren’t much of a family, you know, there for a while,” Robbie says.
It’s why they were willing to make the drive to Omaha four times a week for six months.
At the clinic, therapists expose Kasen to a recording of his brother’s voice in an effort to desensitize him. They also teach the parents how to change Kasen’s behavior.
After entering a small room, Anna Ing, Kasen’s primary therapist, gives him instructions in a tone that has switched from playful to clinical.
“You can sit here and play if you want, but if you hurt yourself, I’m going to punish you.”
The little brother’s recorded voice fills the room.
Kasen rests his head on the table.
He groans.
A few seconds later, he starts tapping his cheek with an open hand.
Robbie, watching from behind a one-way mirror, explains that some kids with blindness and autism tap their faces and mouths for self-stimulation. With Kasen, it appears to have a calming effect, helping to release a bit of stress or anxiety.
But sometimes the tapping leads to self-hitting. It’s how he expresses deep frustration and anger.
The clinic has helped reduce the frequency and severity of such episodes. Things are not yet perfect at home, but at least they can drive the boys in the same car.
Back inside the therapy room, agitation emerges in Kasen’s voice as he starts the face tapping again, this time, in staccato bursts like a woodpecker hammering tree bark. Now he’s slapping himself.
The punishment follows.
From behind, the therapist takes the boy’s wrists and crosses his arms, pulling him to her and holding him firmly. She releases him from the basket hold in less than a minute.
Once freed, he appears calmer. In essence, the therapist short-circuited the tantrum.
The 20-minute session ends, and the tape player stops.
“OK, little man, let’s go over here and listen to music,” Ing says, slipping back out of her clinical voice.
She and Melissa Kadey, a behavioral technician, start singing in high harmony.
“The wheels of the bus go round and round … round and round … round and round …”
Ing lifts the boy to her lap. Kasen squirms as she tickles his sides and tummy.
Now big brother’s laughter bounces off the walls.
Room for doubt
Amanda and Robbie Sipple say they feel confident the Chinese stem cell treatments will improve their son’s sight. But they also reserve a little hope the treatments might lessen the severity of his autistic behavior as well.
Like many nonscientists, the Sipples view stem cells as having almost miraculous properties. News coverage has touted stem cells for their potential to treat such widespread disorders as Alzheimer’s disease, spinal cord injuries and diabetes.
Stem cells already are used to treat illnesses such as leukemia and sickle cell anemia. But doctors and scientists say more research needs to be done before stem cells treat additional diseases.
In this country, animal studies, independent review in scientific journals, human trials and approval by the Food and Drug Administration all help determine the effectiveness and safety of treatments. The process can take years, sometimes decades.
Outside the United States, however, some clinics and companies aren’t waiting. They’re offering stem cell treatments now — for a price.
Kasen’s stem cell infusions will cost $24,000. They’ll take a month to administer, during which time he’ll also undergo holistic therapies, including acupuncture and Chinese massage.
Beike Biotechnology, the company the Sipples are paying, is one of the leading stem cell providers in China. Of the 30 American patients the company has treated for ocular nerve blindness, all have improved, a company representative says.
The stem cells Kasen gets will be harvested from the cord blood of a Chinese newborn. For that reason, the treatment doesn’t involve the controversy that surrounds embryonic stem cells.
But they’re still highly debated.
Among the sharpest critics of foreign stem cell transplants is Lawrence Tychsen, a pediatric eye surgeon in St. Louis and professor at Washington University School of Medicine. Earlier this year, Tychsen and a colleague called the treatments a “21st century snake oil scam.”
Stem cells have never been proven to grow optic nerve fibers in fish or mice, let alone in the human nervous system, which is many times more complex.
Restoring human eyesight with stem cell injections would be a miracle, “the equivalent of a chimpanzee typing the five acts of ‘King Lear’ at one sitting,” Tychsen said in a news release from St. Louis Children’s Hospital.
The treatments are not offered in the United States because they haven’t been proven effective or safe, said Claude Gerstle, a New Jersey ophthalmologist and a patient advocate with the International Society for Stem Cell Research.
He criticized Beike Biotech and other companies for conducting what amounts to human experimentation on patients for profit. Such experimentation, especially when done on children, violates international ethical standards.
Foreign stem cell providers could lessen the criticism by participating in scientific research and publishing studies. Gerstle has been unable to find anything but in-house studies published by Beike; none have been reviewed or published in independent journals.
“Show us the evidence,” he says. “Write up a scientific paper and let us review it and let us publish it. If you truly have a miracle cure, why are you keeping it to yourself? Are you that selfish to let children around the world go without vision so you can extract your pound of flesh?”
Patients who report improvement after receiving stem cell treatments more likely are seeing a placebo effect, Gerstle says. After all the money patients spend on the treatments, it’s natural for them to believe it helped in some way.
He dismisses reports of patients who’ve gained sight because they aren’t supported with scientific data.
For all of these reasons, the International Society for Stem Cell Research recently published guidelines that “condemn” the use of stem cell therapies outside of scientific trials, particularly when companies charge for what are “experimental, unproven and unestablished interventions.”
For those who would call him emotionally detached from the afflicted, Gerstle mentioned something else. In 2003, he suffered a bicycle accident that left him paralyzed, prompting him to research foreign stem cell treatments as a patient.
He has yet to travel abroad for such a procedure.
David Crouse, professor of genetics, cell biology and anatomy at the University of Nebraska Medical Center in Omaha, was involved in stem cell research for 25 years before becoming an administrator. He is troubled by practitioners who say stem cells can cure anything from baldness to heart disease.
“It just scares me when I look at that list,” he says. “Most of them are just figments of people’s imaginations.”
But Crouse says he understands parents — like the Sipples — will do anything to help a sick child.
“They’re spending their money and getting their hopes up for something beyond reality,” he says. “Not only is their health no better, but they’re broke. Not a good combination.”
Offering hope now
Kirshner Ross-Vaden, a registered nurse from a Chicago suburb, represents Beike Biotech in the United States. She’s heard all the arguments from the Western medical professionals.
She thinks they’re heartless because they ignore real people who’ve been given no hope for cures.
The treatments offered by Beike, particularly for blindness, offer legitimate hope, she says. She says Kasen is one of nearly 2 million children in the United States who have optic nerve hypoplasia, one of the nation’s leading causes of blindness.
Simple tests can objectively track changes in vision. For that reason, Vaden-Ross says she has personally collected data from all of the 30 U.S. patients that Beike has treated for ONH in the past year.
She’s convinced the treatments work.
A little girl from Webb City, Mo., — the same girl who captured the attention of Amanda Sipple — was the first patient to undergo Beike’s treatment for ONH. The girl went from no light perception to having 20/630 vision, Ross-Vaden says. While the girl is still legally blind, she can now recognize the faces of her parents up close.
Another patient, a 2-year-old boy from Florida, went from 20/1,200 vision before to 20/200 just six weeks after treatment, Ross-Vaden says.
Not all results have been as dramatic, but all have improved, Ross-Vaden says. Improvements have been documented by American doctors using their own before-and-after eye tests.
She also says the treatments are safe, with headaches being the most common side effect. No patients have suffered secondary infections such as meningitis because of spinal taps, she adds.
Western scientists who attack something so promising without giving it a chance offend Ross-Vaden.
“How many kids do I have to treat before you’re going to stop calling it a coincidence?”
The treatments give the Sipples reason to hope.
And they’re not alone.
Beike has treated some 10,000 patients since 2005, Ross-Vaden says.
And piling up in her suburban Chicago home are a few dozen case files from American parents.
They’re ready to pay to have their children treated for blindness.
Reach Joe Duggan at 473-7239 or jduggan@journalstar.com.
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