The Miracle Worker
From City Weekend, Beijing, China
By Paul Mooney , October 28, 2004
A controversial treatment using TCM and stem cell research offers hope to patients from around the world When Ben Byer was first diagnosed with amyotrophic lateral sclerosis (ALS) in 2002, doctor's had little to offer the 31 year-old actor and playwright. There is no cure for the disease, and doctors gave him just one to four years to live.
But Byer refused to go home and wait to die. "I have a four-year-old son and things I want to do," he said, sitting in a Starbucks coffee shop in Beijing. "I'm fighting for my life."
Byer was angry with doctors, scientists, and a pharmaceutical industry in the United States that seemed complacent about the affliction, better known as Lou Gehrig's disease. "ALS is a terminal disease and no one seems to be making a fuss," he says, holding his coffee cup with difficulty, his speech somewhat slurred. "No one cares except your family."
His father Steve shut down his art business to join his battle. "There's only one choice when you face such a dilemma," says Steve "You get off your ass and start searching the Internet 18 hours a day, you look for anything that remotely seems to help, and you track it down."
Their search for a cure lead them across the Pacific Ocean, and on a trek from Hong Kong to Guangdong, Yunnan, Gansu and finally to Beijing, where Byer was to undergo a controversial new treatment that could save his life.
It all started one night while Steve was surfing the Internet, and stumbled across Dr. Xia Mengqi, a Chinese doctor working in Boston. She claimed her father had developed a herbal remedy that could stop the progression of ALS, and reportedly even restore some lost functions. When the pair met, Dr. Xia recounted how her father had come up with the herbal remedy, called Bunaogao, while banished to Gansu during the Cultural Revolution (1966-1976). The elderly Dr. Xia - now aged 70 - was still alive and well, living in Guangzhou.
Byer meanwhile was taking Rilutek - the only FDA-approved ALS drug, costing US$10,000 per year. It's only proven function was to increase a patient's lifespan by 2-3 months. Byer's vocal muscles had already weakened so much that he had difficulty speaking and swallowing, and the muscles in his hands had begun to atrophy.
And so, in February 2002, Byer stopped taking Rilutek, and began to take Bunaogao. Literally meaning "to nourish the brain", the muddy-looking boiled brew was made of 14 components, including angelica, tortoise shell, and dried leeches. Switching to this strange-looking herbal cocktail was not easy. "You're emotionally reliant on the medicine," says father Steve. "You ask yourself, 'What will happen if he stops? He could get worse.'"
But Byer soon noticed changes in his body. About six weeks after taking Bunaogao, his voice began to improve. After six months, he began working out at the gym, something ALS patients normally don't dare do because of potential adverse effects. "Before taking this, I was progressing fairly rapidly. I was losing function almost daily," says Byer. "I would say that were it not for Bunaogao, I'd be dead, and if not, I'd be kept alive by machines."
An angry Byer decided to throw his energy into a documentary film about ALS and the people who are battling the disease. "I had to choose where to put my anger," says Byer. "Should I sit around and complain, or try to change the system?"
Byer teamed up with childhood friend and filmmaker Roko Belic, an Academy Award nominee for "Genghis Blues". The two began interviewing ALS patients around the US and Europe who were using Bunaogao and getting better. They then flew on to Hong Kong to continue their search for a herbal cure. It was there that Dr. Xia called to suggest they interview Dr. Huang Hongyun in Beijing.
It transpired that Dr. Huang was using fetal cell transplants to treat patients with spinal cord injuries and ALS. Logging on to the Internet, Byer discovered Huang was using a procedure people were talking about doing in 5-10 years time in the US was already available in China.
Byer arrived in Beijing in June, and immediately visited Dr. Huang. After chatting for an hour, Byer decided it was worth trying the fetal cell transplant procedure.
From the outside, the Beijing Chaoyang Hospital looks like anything but a state-of-the-art medical facility. Inside, patients lie on hospital cots in grim, dark hallways with scuffed walls.
Dr. Huang "operates out of a dump, says Byer, before explaining that the operating room itself is high tech. By comparison, he says, top medical centers in the US may be state-of-the-art, "But they have nothing to offer me."
Over the past three years, Dr. Huang has treated more than 500 patients for everything from spinal cord injuries, to ALS, strokes, MS, cerebral palsy and brain injuries with, he says, "equally positive results." He now has 1,000 Chinese and foreigners on a waiting list, who find him via the Internet or word of mouth, what Steve calls "the tom-tom system."
Dr. Huang uses olfactory ensheathing glial cells (OEC) extracted from the olfactory bulbs of fetuses aborted during the second trimester of pregnancy. These cells are thought to have the capacity to regenerate damaged nerve fibers. Although research groups elsewhere are conducting human trials with adult versions of the cells, Huang is virtually alone in using fetal tissue. Dr. Huang says harvesting of fetuses is not done to obtain cells.
Dr. Huang cultures the cells before injecting them into the patient. For ALS patients, three incisions are made, two in the frontal lobe and the third at the spinal cord around mid-neck. Spinal cord injury patients get injections in the spinal cord close to the site of injury. About 1-1.5 million cells are injected per injection site.
Dr. Huang can only perform about 20-40 procedures a month, and his waiting list is eight months long and growing. He has even had to turn away walk-in patients. "I don't have enough staff, beds, and cultured cells," he says. "And I only have two hands."
Animal research using OECs is conducted in the USA, but the human transplant procedure is not available-research use of fetal and embryonic tissue is restricted. Dr. Huang's researchers extract stem cells from a very young embryo, when it is a day or two old, in the phase at which it's called a blastocyst. Some religious groups and anti-abortion activists say that a blastocyst is a human being with the same rights as anyone else. The stem cell debate essentially comes down to a discussion of when life begins.
"We are evaluating Huang's work and determining what next steps would be appropriate, if any," said a spokesman for the Miami Project to Cure Paralysis, based in Florida. Two physicians from the Miami Project To Cure Paralysis traveled to Beijing in July to gather information on Huang's procedure.
Wise Young, a research professor at Rutgers University, in New Jersey, sees promise in the treatment. "His results represent a credible phase one trial that establishes the safety and feasibility of such transplants," says Dr. Young. "Preliminary analyses of the results suggest that the procedure may produce rapid but modest sensory and motor improvements in people from 2-40 years after injury."
Huang is promising no miracles. With spinal injury patients, he said, neurological functions can improve, but he expects no complete recovery. Regarding ALS, he says, "If the process can keep them stable, that's already pretty good."
Jake Giambrone, 18, was paralyzed following a wrestling accident three years ago and has lost the ability to move his body. Just two days after he underwent the transplant, he struggled to move his thumb. "It may not seem like much to you all, but he hasn't moved in three years," said Susan Giambrone, Jake's mother, who says she burst into tears when she saw him move his hand for the first time. "We're real excited about the thumb," she says smiling.
Ms. Giambrone, who traveled to Beijing from Auburn, Alabama, waves away concerns about the morality of fetal cell transplants, comparing this to donor organs. "I'd have preferred to have done this in the US, but there's just one little person in the way of that," she says, referring to the Bush administration's restrictions on such research.
Cade Richardson, 31, of Seattle, paralyzed in a paragliding accident in 2001, heard about Huang from another patient. He communicated with Wise Young, who he says cautioned him to wait six months. But when more success stories began coming out of China, he decided to go ahead. "It's going to be another five or six years before anything happens in the United States," he said. "I don't want to wait."
After his transplant injections, Byer's voice was considerably clearer than a few weeks earlier in Starbucks. He returned to the US in early August, where he will spend 18 months editing his documentary, plowing through hundreds of hours of interviews. "I want to tell people that that your life doesn't end when you have ALS or any other bad disease," says Byer. "I want to show that having this disease doesn't mean you throw yourself into the dumpster or that you're forgotten about.
