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'I don't know how it works' Dr Huang Hongyun cultivates the cells of aborted foetuses and injects them into the brains and spines of his patients. His method is controversial, but his results have led hundreds of westerners to his Beijing surgery. Jonathan Watts was given unprecedented access to the doctor and his patients Jonathan Watts Wednesday December 01 2004 The Guardian They come to him in search of miracles. The lame, the sick and the dying; young and old; Christians from the US, Muslims from the Middle East, Buddhists from Japan, agnostics from Europe. Some have been in wheelchairs for years and believe he can help them walk; others are kept alive by respirators, yet hope he can make them breathe. The voiceless have heard he can bring them speech. The terminally ill seek nothing less than more life. In many cases doctors and friends advise them to stay at home, not to waste their money, and warn them of potential risks. For they come in search of one of the most pioneering - and controversial - medical procedures on the planet: the injection of cells from aborted foetuses into the brains and spines of the sick. And the object of their faith is a Chinese surgeon who spent many of his university years labouring as a peasant and is now conducting trial-and-error experiments on live subjects despite his research being rejected by the western medical establishment. Dr Huang Hongyun promises nothing. He claims no miracle cure. He admits he cannot fully explain his results. All he knows, and all he tells his patients, is that his method often works, that the results speak for themselves. "Our results change thousands of years of traditional concepts," he says. The conventional wisdoms that he claims to have turned on their heads are that chronic spinal injuries - injuries that can cause paraplegia or tetraplegia - can never be treated; and that it is almost impossible to stabilise the condition of patients with the wasting disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. "Our results show that is wrong. It is not a miracle, but it is a big change." And in this cyber age - when many people trust the internet more than their own doctors - this is proving to be enough, because the word on the web is that Huang's results are miraculous. Chat sites for paraplegics and ALS sufferers are buzzing with testimonies from former patients who say they are walking, talking and scratching their noses for the first time in years. None of these claims has been proven to western scientific standards, but Huang's willingness to think the unthinkable in order to cure the incurable is inspiring hope; so much hope that patients are putting aside ethical qualms, paying tens of thousands of dollars and flying to Beijing to act as his guinea pigs. Among them is Van Golden, a Christian, anti-abortion Texan who has sold his house so that he can travel to communist, atheist China and have Huang inject a million cells from the nasal area of a foetus into his spine. According to Golden's doctors, his spine was damaged beyond repair in a car crash last Christmas. The damage to his nervous system was so bad that he has been in a wheelchair and racked by spasms ever since. But Golden refused to give up, even if it meant having to compromise his values. "This is the only place that offered us any hope," he says. "Everyone else offered only to help make me sufficient in that chair. But the chair is not my destiny. It is not ordained." At first sight, the Xishan workers' sanitarium is an unlikely destination for a modern medical pilgrimage. Amid bamboo groves, leafy promenades and a rock garden, the mood is one of dilapidated restfulness. Although this establishment is cleaner and quieter than most Chinese hospitals, the odd bicycle can still be seen trundling through the corridors. In the past month, something unusual has been happening here: this clinic has become the base for Huang's treatment of foreign patients. The first sign is the giant red banner strung across the entrance, which bears the English greeting, "Welcome to the new home." The next is up on the third floor, where a guard restricts access to a newly painted ward full of pink-uniformed nurses and patients, including Van Golden. It cannot be easy for a man of his beliefs to be in China, where the government's one-child policy is partly responsible for millions of abortions each year. But instead of shunning the system, Golden believes his only hope is to embrace it. There is nowhere else he could get foetal cells. "I wish there was another way they could do it. There are 4,000 abortions a day in the US. Partial-birth ones are murder on a most terrible level. What they are doing here is a whole lot more humane. "Four thousand a day. That's a waste. Something good should come out of something bad. The people who don't believe that aren't in a wheelchair." The day after we meet him, Golden takes his turn in the operating room, where Laura Fairrie, a film-maker with Guardianfilms, has been given a rare chance to film the controversial procedure. The scene is a familiar one: Huang and four other doctors gloved and masked, the patient knocked out with a general anaesthetic and rigged up to a respirator, electrocardiograph. A surreal touch comes from the background music: the melody on Huang's mobile phone, which rings incessantly throughout the five-hour surgery. Most of the time is spent exposing the area of the spine where the cells are to be injected, which involves cutting through muscles, then working around the bone to gain access to the sections of the spinal cord immediately above and below the injury. Huang does not decompress the spinal fluid or decouple the vertebrae, which, some critics have speculated, may be the reason for the temporary improvement in patients after surgery. Once the desired area adjacent to the damaged segment is located, Huang, looking through the keyhole incision with a microscope, inserts the cells using an ultra-fine needle to minimise the risk of damaging nerve fibres. The cells, harvested from the olfactory bulbs inside the noses of foetuses, seem to have unusual properties, which may include the ability to stimulate change in the nervous system. Ideally, says Huang, the foetuses should be 16 weeks old to achieve the best results. He says the mothers all give their consent for the embryos to be used in this way and do not receive payment. The Guardian asked to be shown where they come from, but was told this information was too sensitive. Once harvested, these olfactory ensheathing cells (OECs) are cultivated for 10-14 days using a medium that the doctor says he has developed himself. He is reluctant to go into the contents of this liquid, but says it plays an important role. In the process of culturing, the number of cells multiplies ten- or twentyfold, meaning that a single foetus is enough to produce the 1m cells used in Golden's operation - half a million above and below the damaged area. In the case of patients with ALS, the method is more direct - and appears to produce even more remarkable results. Huang simply opens up the skull and injects the cells - more than two million in this case - into the atrophied area of the frontal lobes. We were not allowed to see this operation, but one patient was able to describe it, because - to his surprise - the surgery was carried out under local anaesthetic. "I didn't know I'd be wide awake and feel everything," says Michael Thomas, who has come here from Florida. "They didn't tell me what to expect. They just stuck a needle in my head, which hurt like hell. I was wide awake, so I could see and feel the drill going through my skull. It looked like one of those Black & Decker drills you use at home. The drill got stuck so they had to reverse it. It didn't hurt much, until the last bit, when it popped through." Then the surgeon injected the cells into his brain. "I could hear them inside my head: squish, squish. 'Is that the cells going in?' I asked Dr Huang." Although Huang is one of the first in the world to use foetal OECs on humans, research on cell implants goes back more than two decades. In western animal laboratories, researchers are testing the possible benefits of stem cells on neurological disorders, but Huang dismisses such studies. He says Chinese doctors have already attempted stem-cell transplants on humans with poor results. "In clinical trials in China, stem cells have failed to meet expectations. I believe that in two or three years' time, US doctors will realise this." The boast that China leads the world in this area of medical science would have been unbelievable a few years ago, but lower ethical barriers have allowed doctors here to conduct experiments not permitted elsewhere. "Chinese doctors have mixed many kinds of cells," says Huang. "Some things are legal in China that are not legal in the US." OEC cells do not replace damaged cells, says Huang, but act as a catalyst, which is beneficial to spinal-cord injuries, ALS, multiple sclerosis, Parkinson's disease and conditions caused by strokes. "OEC cells are very special. They show manykinds of growth factors. They can change the local environment, which helps nerve fibres and neurons recover," he surmises. This, he believes, is why so many patients show a sudden improvement after surgery, long before the growth of the cells might be expected to regenerate the damaged nervous system. But when I ask him how it works, he replies: "Actually, I don't know. The mechanism is not clear. But we must face the facts. Any scientist who comes and sees the patients will see the same results as me." The patients appear to have no doubts. We spent a week at the foreigners' ward at Xishan and then visited another institution in central Beijing, where Chinese nationals undergo similar operations. All of the dozen patients we spoke to reported improvements after surgery - some small, others dramatic. "Since I arrived here, I've seen so many miracles," says Laura Jackson, an American 15-year-old who was nearly killed after she fell in a cheerleading accident. The damage to her upper spine was so bad that doctors told her father that she would never breathe by herself again and asked if he wanted to switch off her life-support system. But he and his daughter refused to give up. Laura now uses a wheelchair and breathes with a respirator, but she says she has made progress under Huang. For the first time since her accident, she says, she can feel a muscle in her arm that gives her hope she may one day be able to brush her own hair. She also came off the respirator for 15 minutes - during which she called the experts who doubted Huang. "I don't know why people deny it," she says. Even more dramatic changes were observed among the ALS patients, many of whom visibly picked up in posture and speech within hours of the operation. ALS is a progressive and ultimately fatal neuromuscular disease that causes nerve cells to degenerate and muscles to weaken. Because the senses remain unimpaired and the intellect is often unaffected, it has been described as like "living in a glass coffin". The Xishan ward includes people who have gone from muscle-bound weightlifters to scrawny invalids barely able to lift their heads. When we first see Roger Beirnaert, a builder from Belgium, he looks as though his pride has been crushed as badly as his body by ALS. It is hours before surgery and his head lolls forward on an apparently useless neck as drool escapes from his mouth. The next day he appears to be a man transformed: he lifts his head with an almost haughty air and walks with confident steps. His son Tony says his father can also sleep without waking every hour and having to be turned over because he worries he is choking. "He's laughing again and smiling," says Tony. "There is an improvement. It is difficult to say what more we expect. This is just a beginning. Let's hope for more." Another Belgian, Patrick Six, a former policeman with ALS, was grumbling a day after his operation that he was not experiencing the rapid gains he had expected. Two days later, he, his wife and his sister Caroline are joining the chorus of praise for Huang. They all say he can talk more clearly, though he still has to spell out many words that his tongue is not strong enough to form. For the first time in six months, a beaming Six says, he can flatten out his hand. "We know that stabilisation is a big step," says Caroline. "Anything on top of that is a victory." I ask Six whether he might be imagining the improvements. "It is impossible," he says. "Dr Huang is proving something is happening here. My Belgian doctor should come here for a month. I'd recommend it to others with my disease. It shows there is an alternative." Two days after his operation, Golden too has noticed a change. "I can feel more muscles firing again. The feeling is back in my finger. My feet aren't nearly as sensitive as before, my spasms have slackened up and there is a little more movement in my feet ... It is these little things that build up to big things. It's the hope." It is hard not to be swept away with the exultant mood on this ward of very driven, very desperate people. They expect so much from Huang that they are inclined to play down many of the risks and hardships involved. It takes some time before Golden acknowledges that the recovery of sensation in his fingers has actually brought pain - like needles being inserted, he says. Others pay a bigger penalty. Two foreign patients have died in Huang's care in the past month. In both cases, the patients were so sick that they might well have died anyway, but the long flight and rudimentary aftercare in Xishan will not have helped their recovery. Western doctors are divided about Huang's work. His critics say he is exploiting desperate people to hone a technique that has not yet undergone rigorous testing and lacks any long-term follow-up. "The general scientific opinion is that this isn't properly controlled work. I don't know anyone who doesn't have an interest in what he's doing - and I don't know anyone who approves," says Professor Geoffrey Raisman at the National Institute of Medical Research, who is pioneering research on OECs in Britain. But Huang also has prominent supporters, including Paul Cooper, who runs the spinal neurosurgery programme at New York University medical centre. "Huang isn't a charlatan," says Cooper. "What he is doing is very impressive. I don't understand it, but I've seen the results. He's not raising people from the dead, but people who have had no movement in legs could move them, people who couldn't sit up sat up, people who couldn't hold a cup held a cup." Huang's former teacher, Professor Wise Young, the director of neurosurgery research laboratories at New York University & Bellevue medical centre, is equally supportive - and perplexed. "I've seen it with my own eyes; there's no doubt that it happens. The problem is, the results are too fast for regeneration, therefore the mechanism for early recovery is not known. So we are now working hard to try to understand the process in animals." Complicating the debate is Huang's lack of statistical data and and his refusal to carry out the double-blind trials considered necessary in western circles to rule out the placebo effect. The Chinese neurosurgeon says such tests are unethical because they involve cutting someone open and only pretending to treat them. "This would not be legal in China," he says. "Even if it was, I wouldn't do it. Double-blind trials only harm the patient." Huang says he simply wants to cure as many people as possible. Money, he says, doesn't come into it. He still treats Chinese patients who pay less than half of the $20,000 fee levied on foreigners. Although he is earning his hospitals a small fortune, he says he gets only $500 a month regardless of how many operations he performs. His patients - foreign and Chinese - and their families appear to adore him, and to accept what he does with foetuses. Huang has already operated on 500 people. Every month, at least a dozen more fly in. He gets hundreds of new inquiries a week and his waiting list for foreigners now stretches until next December. So many Chinese patients have asked for treatment that he says he could be busy for 10 years, even though he has trained at least five other doctors in the procedure. "We need 100 more Dr Huangs," says Laura Jackson's father Daryl. "And we need more cells. It's a different government over here. They have to trim the population. There are 15 to 20 million abortions in China a year. If everyone who was aborted could save a life, there would be no sick people left in the world." Golden's Christian wife, Debbie, also sees Huang as an idealist - particularly in comparison to the US doctors who charged her husband almost $1m, but were able only to make him more comfortable in his wheelchair. "In the US it's totally about money, but China is more ethical," she says. "They work harder. I'm American, so that is very hard to say. "I don't agree with abortion, but it will happen anyway. In the US, we do abortions but don't use the cells. In China, they don't just take life and destroy it - they give something back. It's like lemonade out of lemons. You take something bad and you make it good." Such reasoning requires a moral somersault, but it is one that can be done easily in China. That is enough to generate hope. In the west, the debate about using cells from foetuses looks set to continue for decades. In China, it is a non-issue. As a result, people who are maimed or dying no longer have to wait for the politicians and the scientists to scrutinise the ethnical and medical risks. There is a choice. It is an uncertain one. The long-term impact of the surgery remains unknown, but that does not bother patients who would otherwise have only a few years to live, nor does it bother those like Golden who are willing to try anything to get out of a wheelchair. "People like me and the others in this hospital are willing to risk everything, even our lives. I'll be a guinea pig. Some hope is better than none." Four days after his operation, Golden and a couple of other patients visit the Great Wall of China, conveyed there by bus and then wheelchair. The sight of the world's biggest and oldest barrier appears to inspire rather than daunt the Texan, who now believes in the miracles of a Chinese doctor. "I want to come back here next year and walk the wall for myself," he says. · Guardianfilms' exclusive TV report on Huang's work goes out on Newsnight tonight on BBC2 at 10.30pm. For a short trailer, go to guardian.co.uk/guardianfilms/china Copyright Guardian Newspapers Limited __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
