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Paralysis patients take a chance

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BEIJING — In January 2004, Kim Allen suddenly began having trouble turning the key in her car’s ignition. All too quickly, a spreading weakness slurred her speech and limited her ability to walk.

After two failed surgeries, endless trips to the doctor and eight months of steady deterioration, she was diagnosed with the incurable nerve illness known as Lou Gehrig’s disease. The doctors told the 49-year-old native of Sioux City, Iowa, that she had no more than 18 months to live.

But then Allen learned of Huang Hongyun, a Chinese neurosurgeon who performs an experimental surgical procedure on patients with spinal cord injuries or amyotrophic lateral sclerosis (ALS), the formal name for Lou Gehrig’s disease. Huang’s controversial technique, using cells from aborted fetuses, is not available in the USA, and medical experts say there is no scientific evidence that it works.

A desperate Allen brushed aside those concerns. “This was the only chance I had,” she says. “I was determined to come here to see if it would help me.”

Allen is among dozens of seriously ill Americans who have gambled on an unproven medical procedure in a country better known for its plastic toys than for the quality of its health care. “Americans are the laboratory rats” in Huang’s program, says Barth Green, president of the Miami Project to Cure Paralysis, which is affiliated with the University of Miami.

The Chinese doctor says he has operated on about 500 spinal cord patients and 200 others with ALS. About one-quarter were Americans. During her surgery April 19, Allen received only a local anesthetic before Huang drilled two holes in her skull. The surgeon then injected 2 million cells harvested from the nasal linings of aborted second-trimester fetuses into her frontal lobe.

Within days of the 45-minute procedure, Allen says, she felt tangible improvement. “I can smack my lips for the first time in eight months,” she says. “It sounds like a simple thing, but when it’s something you can’t do …”

‘No scientific evidence’

Skeptical doctors back home aren’t convinced. They say Huang doesn’t keep track of his patients, so no one knows how many experience lasting benefits. And they say he has failed to perform the controlled studies that could verify anecdotal reports of improvement.

“We don’t know why what’s happening is happening. … We want the data. Unfortunately, the data doesn’t exist,” says Maura Hofstadter, director of education and scientific liaison at the Reese-Irvine Research Center in Irvine, Calif., which studies spinal cord injuries.

The Miami Project sent a team of doctors to Huang’s clinic about six months ago, but they came away unimpressed, Green says. “There really was no scientific evidence to substantiate that this was a safe or effective treatment.”

Green says he offered to pay for a second team to spend six months to one year in Beijing performing a scientific study of Huang’s work, but Huang opted to expand his practice to eight medical centers rather than accept the offer.

Interviewed at his clinic in Beijing’s Fragrant Hills area, Huang, 50, grows visibly exasperated. The clinic lacks the money and manpower to follow every patient. Any objections to his work stem from a cultural bias against Chinese methods, he says. “It’s discrimination. They don’t really know what I’m doing. It’s just nonsense.”

He refuses to disclose his compensation, though in December he told a British newspaper, The Guardian, that he received a flat $500 monthly salary no matter how many operations he did.

In defiance of the experts’ doubts, Huang’s ward is full of patients from the USA and Europe; his waiting list extends into 2007. Reflecting his global appeal, the waiting-room wall clocks read New York, London, Paris, Moscow, Tokyo and Beijing.

Goal is to prolong life

The clean, well-lit facility is a world apart from the slightly grubby state-owned medical center one floor below. As if to underscore the separation, a uniformed guard restricts entrance.

Huang’s patients praise the care they receive at a facility the doctor charitably likens to a “five-star hotel.” During a recent visit, the staff seemed plentiful and attentive. “It’s very good,” Allen says. “They come in and check on you all the time.”

Still, because of a scheduling mix-up, no one was at the airport to meet Allen and her husband, Joe, on April 17 when they arrived from the USA. And while she waited for a room to become available, she spent an entire day parked in a wheelchair.

In an interview in his office, Huang, a broad-faced man with neat black hair, betrays a slightly harried air. A flat-screen computer monitor and two speakers occupy his desk. The only décor is a wall-mounted map of the world.

Huang spent three years researching the use of fetal cells at Rutgers University and New York University before returning to Beijing in 2000. Earlier, he worked in remote Xinjiang province in western China and a military hospital in Beijing.

A licensed neurosurgeon in China but not in the USA, Huang experimented on rats before beginning the surgery on humans in October 2001. He is careful not to promise too much. “This is not a cure,” he says.

Indeed, Huang concedes he can’t explain how the fetal tissue — called olfactory ensheathing cells — might work on damaged brains and spinal cords. The cells have a unique ability to perpetually regenerate. But the progress reported by spinal cord patients, for example, occurs too quickly to represent Regeneration of damaged nerves.

Green says patients may feel temporary improvement because the operation eases pressure on the spinal cord or eliminates harmful scar tissue.

Results vary for each person. Because victims of spinal cord injuries can generally remain stable without treatment, Huang aims to improve their quality of life. After the two- to three-hour surgery, some patients are able to breathe without a Ventilator. Others regain control of urination and sexual function, Huang says.

For victims of the progressive, fatal ALS, Huang’s goal is simply staving off the inevitable. “Right now, our methods can only make them survive a little longer: one month, a few months, one year,” he says. “But this result is much better than nothing.”

Huang’s patients are willing to take the chance. Almost all come here over the objections of their personal physicians, who worry that the experimental treatment might be a scam. Because insurance does not cover such unproven techniques, each must raise privately the $20,000 treatment fee plus thousands more for travel. (Huang charges $7,000 to $8,000 for Chinese citizens.)

Allen’s friends raffled off a Ford Focus and held a spaghetti supper and pancake breakfast to help.

But perhaps what attracts the most debate in the USA is Huang’s use of cells from aborted fetuses.

Sandy Gullett’s husband, Roger, 55, a circuit court clerk in Kentucky, hasn’t spoken for a year after being diagnosed with ALS. Sandy, 50, who describes the couple as “Christian people,” says the origin of the cells used in her husband’s surgery April 20 posed a moral dilemma.

“We prayed about that. We talked to other Christians,” she says, sitting by her husband’s side. “It’s a way of taking something bad that’s happening and maybe making something good out of it.”

Before coming to China, many patients, including Allen, were offered the chance to participate in experimental treatment programs in the USA. But federal regulations require that some participants receive the potentially lifesaving treatment being studied, while those in a control group receive no treatment or a harmless placebo.

The aim is to make sure that proposed innovations are safe and effective before they are widely used. For Allen, however, that meant a high-stakes choice. She could gamble on receiving medicine in a Mayo Clinic trial — or on Huang.

She chose China. “I wanted to be able to talk better and walk better and get my strength back,” she says. “I lost a brother to ALS 15 years ago, and at that time they didn’t have anything like this.”

Still, the absence of data means that American doctors can’t be sure whether any improvement is the result of the fetal cells, the patient’s belief that the treatment will help, or some other unknown factor.

“We do find his work interesting and potentially promising. But there isn’t any current published data supporting his work,” says Jennifer Brand, director of chapter-patient services for the ALS Association in Calabasas Hills, Calif.

No controlled trials

Huang has published articles in professional journals that are little known outside China, including the Chinese Medical Journal and the Chinese Journal of Clinical Rehabilitation. While both are regarded here as reputable, peer-reviewed journals, they are less prestigious than Western publications, says Zhang Hongde of Peking Union Medical College’s publishing house. “The top articles usually go to the foreign medical journals,” he says.

Huang bristles when asked about his failure to perform controlled trials, which could involve operating on patients without giving them the fetal cells. He says such “sham surgery” is unethical. “I hate to discuss this. I think it is a stupid question. I’m not allowed to do this by Chinese law.”

But his refusal to comply with standard scientific practice guarantees that the criticism will continue.

“He’s in an Environment that’s scientifically unsophisticated. There’s no control. You can do whatever you want,” Green says. “What he’s doing is wrong.”

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