Wednesday, August 15, 2007

Seeking Hope in Chinese Stem Cells

Treatments May Not Work or Even Be Safe,
But Dozens Make the Trek Each Month
By NICHOLAS ZAMISKA
July 2, 2007; Page B1

SHENZHEN, China -- Christina Bogert has spent years seeking ways to help her 10-year-old son, Douglas, who is severely autistic. After little success with other treatments, she brought him here to try something he can't get in the U.S.: stem-cell injections.

Ms. Bogert, a 45-year-old aerospace engineer for Lockheed Martin Corp., says she has to try different approaches even when they involve unproven medical procedures. If she doesn't take chances, she says, "that means my son will never get better." So in June 2006, she and Doug flew from their home in California to a Shenzhen hospital for about four weeks of injections at a cost of $10,000.

Dozens of foreigners a month, many of them children, have been flying to a handful of hospitals in China, seeking stem-cell injections for a variety of conditions. There is no widely accepted scientific evidence that the procedures work or are even safe. Nonetheless, desperate patients are spending thousands of dollars, hoping to find cures for brain injuries, cerebral palsy and even autism -- a developmental disorder with uncertain origins and a range of symptoms, from the failure to develop language skills to the inability to sense the feelings of others.

Some stem cells have the potential to turn into different cells, including muscle, blood and brain cells, leading scientists to believe that they may be useful in treating medical disorders. In the U.S., embryonic stem cells have been hugely controversial because researchers must destroy a days-old human embryo to harvest them. Chinese doctors use different, more mature stem cells from umbilical-cord blood, brain tissue of aborted fetuses and other sources.

These types of treatments aren't allowed in the U.S. The National Institutes of Health supports research on adult and embryonic stem cells as therapy for a variety of disorders, but Naomi Kleitman, program director for the National Institute of Neurological Disorders and Stroke, notes that the cells "are still being investigated at a basic level in animal models."

Last March, Bruce Dobkin, the medical director at the neurologic rehabilitation and research program at the University of California, Los Angeles, published a report in a peer-reviewed medical journal on the work of a Chinese spinal-cord researcher who has offered stem-cell therapies to foreigners for years. Dr. Dobkin's study said none of the seven spinal-injury patients who were observed experienced significant improvements, and five suffered potentially dangerous complications.

Thomas K. Koch, chairman of the neurology section of the American Academy of Pediatrics, is also skeptical about stem-cell use in China, partly because cells intended to repair function in the brain are injected into the patient's back. "That's like saying they're going to Fifth and Mission in San Francisco, and taking them to California and dropping them off," Dr. Koch says. "To just all of a sudden say, 'We can cure all neurological disease with stem cells' is a bit grandiose."

But in China Sean Hu, 40, a doctor who is chairman of Beike Biotechnology Co., shrugs off skeptics. "They underestimate the ability of the cell," says Dr. Hu, whose company prepares the cells to be injected into patients and then hires doctors to perform the procedure at several Chinese hospitals. And Mao Qunan, a spokesman for China's Ministry of Health in Beijing, which regulates the procedures, says, "The stem-cell treatment is safe, and it has been used in many countries."

At Shenzhen Nanshan People's Hospital, where Ms. Bogert took her son, the treatment is provided by Beike, which pays the hospital for the use of its facilities. According to Jonathan Hakim, a 35-year-old Minnesotan who works for Beike recruiting patients from overseas, about 250 foreigners have made the trip since Beike began offering stem cells to foreigners in October 2005. Of the 141 patients who came in 2006, Mr. Hakim adds, 38 have come back for a second round of treatment so far. Chinese patients also get the treatments from Beike or other providers.

Ms. Bogert's quest to treat her son's autism began soon after he was diagnosed, when he was almost three. She says she and her husband have taken him to about 20 doctors and have tried behavior therapy, putting him in a pressured chamber filled with pure oxygen, and injecting him with medicine to try to remove heavy metals, such as mercury, from his blood.

Doug is nearly mute. He can understand only simple sentences and has difficulty staying focused for more than a few seconds at a time, his mother says. The kisses he showers on her sometimes give way to bites, and she worries that his erratic behavior may turn violent as he grows bigger.

In an online discussion group, Ms. Bogert read about the possibility that stem-cell injections could cure autism. She made up her mind to try it but had to convince her husband, Howard, who also works at Lockheed. In addition to worrying about the risk to Doug, he was concerned about the cost, which insurance doesn't cover.

Other parents have similar concerns. "Is it really working that great?" Catherine Nguyen wrote in an online discussion for parents of kids with brain injuries. "I hope it's about improving the technology and NOT because they want to and can squeeze as much money out of loving, dedicated parents like ourselves."

Ms. Nguyen, a 31-year-old mother of three from Cupertino, Calif., took her 3-year-old son, Lukas, to China for the injections in October, hoping to repair brain damage stemming from a head injury he suffered as a baby. She says she saw subtle gains. He could understand his name, and rather than mainly eating porridge, he ate some solid foods like hamburgers and vegetables. "If I asked my extended family members, 'Do you see anything?'" she concedes, "they probably wouldn't see anything."

Ms. Nguyen took her son back to China in April for a second round of treatments, and she says she has seen more improvement. Lukas was able to stand by himself for two minutes just by holding onto her hand, Ms. Nguyen says. "I don't want to be looked at as a mother who is experimenting on her son," she says. "But now looking back I really regret listening to the doctors because I feel as if I had taken my son sooner rather than later, more things could have happened." Ms. Nguyen plans to return for a third round of treatments in January.

The Bogerts eventually decided to chance the trip. Doug received a total of five stem cell injections -- each carrying 10 million to 15 million stem cells, according to Mr. Hakim -- spaced about a week apart.

After the month of injections, Ms. Bogert and Doug waited for their flight home in Hong Kong's airport. Doug was running circles around his mother. Somehow, he had lost his shoes. Ms. Bogert was hopeful the treatments would help, but unsure if they would return for more. "I've played guinea pig so many times with my kid already," she said. "I don't really want to do it again."

Back home in San Jose, Calif., she watched her son's behavior closely, looking for hints of progress. There were some hopeful signs. Doug's handwriting, which used to be barely legible, began to improve, according to his mother. When his parents tried to teach him his telephone number, they figured they would have to break it into three parts. But the first time they showed him the number in full, they say, he memorized it immediately.

After those encouraging surprises, though, Ms. Bogert -- along with Doug's six therapists and two doctors -- began to conclude that the stem-cell therapy hadn't worked. She says they haven't seen progress in the months since, and she doesn't plan to go back to China.

"I'm moving into the 'Gee, it hasn't cured my kid' kind of place,' '' she says sadly.

Write to Nicholas Zamiska at nicholas.zamiska@wsj.com

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