When Leo Hallan woke up in a hospital and found out he was paralyzed from his chest down from a motorcycle accident in 1976, he thought his life was over.
The 20 year old American had also lost sensation in both his arms and hands.
Doctors told him he would have to live with the disability for the rest of his life.
Sitting in a wheelchair in Dr. Huang Hongyun’s clinic in the Beijing Xishan Hospital recently, Hallan, now 49, told of a miraculous moment when he was able to regain some of his senses for the first time in 29 years.
Shortly after Huang injected Olfactory Ensheathing Cells (OEC) into his spinal cord, he started noticing changes-within a week, he started perspiring below his chest and could feel the chill of the wind for the first time when he went outdoors in his wheelchair.
“When I was outside, I felt cold in my arm, the hair of my arm was moving, I had to look down to believe it,” said a cheerful-looking Hallan. “Words cannot express my emotions.”
“It was total amazement, just unbelievable,” he said.
“Twenty-nine years ago, many doctors said I’d never walk again. At least now I can say there is quite a bit of hope.”
Hallan is just one of some 800 patients who have been seen by Huang, whose controversial approach to treating Amyotrophic Lateral Sclerosis (ALS) and spinal cord injuries by injecting cells from aborted fetuses has been skeptically received by many Western medical experts.
“They can´t accept that China is ahead of them.” – Dr. Huang
Almost all of his patients are foreigners from Spain, Germany, France, Japan, New Zealand, Singapore and Pakistan, though most are from the United States.
Huang’s center said most of its spinal cord injury patients have regained some sensory and motor function, as well as the control of urine and bowel movement, while most ALS patients had seen indefinite stabilization in their neurological function.
“Most of our patients have obtained significant functional improvement to various degrees and about 70 percent of the patients have obtained some improvement in the quality of their lives,” his center’s website said.
It was the first time that the College of Physicians & Surgeons of British Columbia has heard of Huang’s practice of using cells from aborted fetuses.
“If this treatment were to be practiced here, it would cause significant ethical concerns,” Dr. Morris VanAndel told The Asian Pacific Post.
He is the registrar of the college, the statutory body created to regulate medical practice.
VanAndel said that Huang’s practice is “similar to the use of stem cells” from human embryos, a practice banned in the US.
“It is never ethically acceptable to intentionally destroy a human being, no matter how small,” said a previous position paper by the Canadian Physicians for Life to the debate on stem cell research.
Western skeptics say the effectiveness of Huang’s approach has not gone through rigorous tests and some even accuse him of exploiting desperate patients as laboratory mice.
“I haven’t come across anyone in the field who considers his procedures safe and effective,” said Professor Geoffrey Raisman at the Institute of Neurology, University College of London, who is pioneering research on OECs.
“He is the only one who claims it works, other people who have examined some of his patients said they saw no improvement,” Raisman said.
Moreover, Western doctors say Huang doesn’t systematically keep track of his patients so there is no statistical data on how many experience lasting benefits, and he fails to perform controlled studies considered necessary in Western circles.
But that doesn’t bother his hopeful patients.
Hallan, who had been told by Western doctors his condition would never improve, swore by Huang’s treatment.
He said didn’t mind “at all” being a laboratory mouse and that many other patients like him were desperate to try out new treatments, even if they had not undergone enough tests.
“The fact that this has moved on from rat (to human) is one of the most exciting prospects,” he said. “There is risk in anything. You have more chance of dying just walking on the street.”
From his spartan office decorated with calligraphy extolling his work (“Miracle hands bring back life”), an exasperated Huang argued impassionately and defensively against the criticisms.
He said the placebo-controlled trials that some critics say he should conduct were unethical and not permitted under Chinese law because it would mean effectively deceiving patients into believing they had been treated when they hadn’t.
“For someone like Mr Hallan who had been ill for 29 years, it would be cruelty to let him have that done to him,” Huang said. “What is the priority here? Science or the patients?”
He also lashed out at the hypocrisy of those who criticize him for his use of nasal linings of aborted fetuses, arguing that Western countries such as the US are already using embryonic cell implants to treat Parkinsons disease.
“So only you are allowed to do this and we are not allowed to do this?” he said.
Another American patient, Doug McGuiness, who had two tiny holes drilled into his skull and then an injection of two million OEC cells, said even if his improvements were only temporary, the US$20,000 (C$23,000) treatment fee would still be worth it.
Eight years after being diagnosed with ALS, the 59-year-old engineer was overjoyed when he could button his own shirt and raise his legs without help just two days after the operation.
“This is a terminal disease, it’s worth it even if it is three months, six months, a year,” he said, noting that most ALS patients only have three years to live.
Even though it is still unknown exactly how the fetal tissue might work on damaged brains and spinal cords, Huang argued that this shouldn’t stop the technique being used when it has been proven to work.
“Why do we need to eat and sleep, do we know? Is that a reason to stop eating?” he challenged.
Huang put the wide skepticism down to discrimination.
“They have a prejudiced attitude. They think it is implausible that a developing country like China can develop something that America and European countries haven’t done yet,” he said. “They can’t accept that China is ahead of them.”
With more trials of combinations of different techniques, Huang said it might be a possibility for his patients to walk in the future, but carefully emphasized that this was only one step in a very long process.
“Maybe eventually, but we don’t have the solution here right now,” Huang said.
But his critics remain unconvinced.
“I would be delighted if he would present evidence his OECs are working in his patients and it would have enormous impact on the field,” Raisman said.
But unless he can provide data to convince other experts in the field, it is pointless.