Ride For Life: Chinese ALS treatment cultivates believers

BEIJING -- The neurologist told Ronnie Abdinoor, a New Hampshire trout and vegetable farmer, that he had about two years to live. With tears in her eyes, she told him to get dressed and go home.

Stunned, Abdinoor got dressed. He went out into the medical clinic hallway.

"Are you sure?" he asked her.

"I wouldn't have told you that if I wasn't," she replied.

It was December 2002, and Abdinoor, father of one, had been diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. It is rare, fatal and incurable. It kills motor neurons, the cells that tell muscles what to do, so the body becomes weaker and eventually almost totally paralyzed. Stephen Hawking has it. Mao Zedong, one of China's most famous communist leaders, died of the disease in 1976.

It is to Mao's burial city that Abdinoor, 47, and dozens of other ALS patients from around the world, including two from Clarke County in southwest Alabama, have come hoping to get better, if not entirely well.

A Beijing doctor is treating patients surgically, transplanting cells from second-term aborted fetuses into their brains, in the theory that it would help regenerate the motor neurons. This treatment is being hotly discussed in the ALS community -- not just by patients but by researchers and doctors, always wary of unsound treatment that could harm patients and of scam artists willing to profit from desperation.

Western doctors have refused to endorse it because of the lack of scientific testing. There has been no animal testing and no human studies with control groups. Doctors also have not totally dismissed it for the same reason. Pennsylvanian J.R. Ver, a computer programmer, said his doctor told him to go because it couldn't hurt and could possibly help.

For ALS patients, it's the first time they've been told maybe, just maybe, they have a chance. They've dug deep for the $25,000 cost, which is not covered by insurance. In some cases, families, friends and churches raised the funds. The doctor, neurosurgeon Hongyun Huang, said the yearlong waiting list is full and that he is training a handful of other surgeons to do what he does.

Sometimes patients come to Beijing with no appointment, hoping Huang will fit them into his crowded schedule. An Albanian man has been in the hospital for more than a month, waiting. Huang says he hates to send these patients away.

"I try my best to help them," he said.

Looking for help:

Kevin Granger, 44, a Wisconsin glass company owner and father of four, was diagnosed with the disease in March 2003, a year after his right hand started feeling weak.

"What do you do for that?" he said he asked the doctor.

"Nothing," the doctor replied. "You die in three to five years."

Granger left the clinic crying and went to tell his wife, Mary.

That's the story these ALS patients tell over and over. Doctors couldn't help them. They were told to get their affairs in order. Clinics offered assistance in coping with the disease, such as how to communicate when speech went, how to prepare foods when the ability to chew left and how to obtain tools easy for weakened, clumsy hands to use, like tongs with extra wide grips.

"When your body starts to fail, you think you'll recover," said Abdinoor, not long ago an avid hunter, camper, fisherman and snowmobiler. "When it doesn't recover, it throws you for a loop. Usually when you get sick, you wait a bit, and you get better. With ALS, you keep going down. You get weaker and weaker."

Mostly, these patients learned about Huang through the Internet.

"There are so many scams that you don't take anything too seriously," Granger said.

After hearing about a Wisconsin man, Steve Byer, whose ALS-afflicted son, Ben, had the surgery, Granger took a second look at what Huang was doing.

"I figured if it weren't really going on, Steve wouldn't let his son come over here to do it," Granger said. "I figured it was real, it was safe, and we signed up immediately. And so did a boatload of people."

Byer now serves as a go-between for Huang and American patients.

Patients come to Beijing expecting to stay four to six weeks. So far, they have been living in a hotel about a block from the hospital, though they've been told that they will move soon to a different part of the city, where the air is cleaner and where they can stay in the hospital.

They come to Beijing with all different levels of abilities. Some can talk but can't walk or use their arms. Some can walk but can't talk. Some use canes. Others are in wheelchairs. This month, they have come from Belgium, Albania, South Africa, Japan, Turkey and the United States. The group also includes some paralyzed from spinal cord injuries; Huang treats them also.

Angry at the system:

Many are angry that the medical establishments at home won't investigate this procedure more aggressively.

"The United States, through this whole thing, I'm very angry at the system over there, a country that I'm supposed to be proud of," Granger said. "As simple as the surgery has become? They should be doing this in the United States."

Several explored the possibility of participating in double-blind clinical trials for treatment in the United States. In such trials, one group receives an experimental treatment, while another group receives a placebo.

A placebo is a harmless, unmedicated preparation often given as a medicine or treatment to a patient merely to make him feel better. In testing drugs or therapies, a placebo -- sometimes called a sugar pill -- is given to one group of patients to compare their progress with that of patients receiving a treatment that is being studied.

"You don't even know if you get the stuff or not," said Barry Morgan, a Dallas accountant diagnosed last December. "You may be helping other people but you don't know if you're helping yourself."

Improvement claimed:

On Oct. 11, three men had surgery, including Geert Caura, 35, a former Belgium soccer player, father of two and a councilman from the city of Gistel.

Caura said he can roll his "R's" again, necessary for his native language. He can open his hands more than he used to and has regained some strength in his legs and shoulders. He had hoped for faster progress, but said he expects to regain more ability after returning home. He and his wife, Chantal Fryson, are participating in a Belgian television documentary about the treatment which they said they hope will prompt researchers to switch from looking for a medicinal cure to a surgical one.

He recommends the surgery to anyone with ALS, he said.

Such a recommendation has limited use, said James Heywood, founder of a group that funds ALS research in the U.S. Those who have emotional and financial investments in the surgery wouldn't want to admit it doesn't help.

"I have not seen any evidence to date that says it is helping people in any significant way, but that's not to say it's not there and that's why it's so hard," he said. "I wish it were being tried in the United States to tell whether it could work or not and that won't happen."

He blames a widespread reluctance to engage in political, legal and financial risk.

"This illustrates a fundamental failure at the leadership level in the United States to move forward with these therapeutics," he said. "We have become so obsessed with risk that lives are being lost."

At the Beijing hotel, patients, some of whom shunned ALS support groups back home and their association with death and dying, relish mingling with others. They throw parties, collect e-mail addresses and phone numbers, congregate in the hallways and in each others' rooms.

"We're all looking at a future," Granger said. "It's a different situation. It's very exciting."