By CHRISTOPHER BODEEN and ALAN SCHER ZAGIER
BEIJING (AP) — They're paralyzed from diving
accidents and car crashes, disabled by Parkinson's, or blind. With few
options available at home in America, they search the Internet for
experimental treatments — and often land on Web sites promoting
stem cell treatments in China.
They mortgage
their houses and their hometowns hold fundraisers as they scrape
together the tens of thousands of dollars needed for travel and the
hope for a miracle cure.
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Paralyzed after a diving accident almost a year ago, 15-year-old Celine
Lyon receiving treatment at the Tiantan Puhua Hospital in Beijing,
China, Thursday, May 24, 2007. Tiantan Puhua, a joint venture between
Asia's largest neurological hospital and American Pacific Medical
Group, specialize in using stem cells injections to treat diseases
ranging from stroke and spinal cord injuries to cerebral palsy and
Ataxia. Since opening its treatment to foreigners last year, the
hospital has been attracting increasing interest from overseas
patients, the latest breed of medical tourists. (AP Photo/Ng Han Guan) |
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Kazakstan's Serik Ananchiev, 27, right receiving treatment at the
Tiantan Puhua Hospital in Beijing, China, Thursday, May 24, 2007.
Tiantan Puhua, a joint venture between Asia's largest neurological
hospital and American Pacific Medical Group, specialize in using stem
cells injections to treat diseases ranging from stroke and spinal cord
injuries to cerebral palsy and ataxia. Since opening its treatment to
foreigners last year, the hospital has been attracting increasing
interest from overseas patients, the latest breed of medical
tourists.(AP Photo/Ng Han Guan) |
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Kazakstan's Serik Ananchiev, 27, left paralysed in a car accident and
Zhao Jionghao, 2 at right receiving treatment at the Tiantan Puhua
Hospital in Beijing, China, Thursday, May 24, 2007. Tiantan Puhua, a
joint venture between Asia's largest neurological hospital and American
Pacific Medical Group, specializes in using stem cells injections to
treat diseases ranging from stroke and spinal cord injuries to cerebral
palsy and ataxia. Since opening its treatment to foreigners last year,
the hospital has been attracting increasing interest from overseas
patients, the latest breed of medical tourists.(AP Photo/Ng Han Guan) |
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Angela Im at right looks over as her husband, William T. Gillespie ,
left talks about her treatment to repair damage to her Brain stem
caused initially by lupus at the Tiantan Puhua Hospital in Beijing,
China, Thursday, May 24, 2007. Tiantan Puhua, a joint venture between
Asia's largest neurological hospital and American Pacific Medical
Group, specializes in using stem cells injections to treat diseases
ranging from stroke and spinal cord injuries to cerebral palsy and
ataxia. Since opening its treatment to foreigners last year, the
hospital has been attracting increasing interest from overseas
patients, the latest breed of medical tourists.(AP Photo/Ng Han Guan) |
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Chris Hrabik, 21, works on his customized 1993 Nissan 240SX as his
wheelchair sits near by Thursday, Aug. 2, 2007, in Oak Ridge, Mo. More
than a year after his return from China where he received stem cell
therapy, Hrabik says he has nearly complete use of his left hand and
improvement in the right, reversing paralysis caused by a car accident
near his 18th birthday. (AP Photo/Jeff Roberson) |
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A number of these medical tourists claim some success when they return home:
Jim
Savage, a Houston man with paralysis from a spinal cord injury, says he
can move his right arm. Penny Thomas of Hawaii says her Parkinson's
tremors are mostly gone. The parents of 6-year-old Rylea Barlett of
Missouri, born with an optical defect, say she can see.
But
documentation is mostly lacking, and Western doctors warn that patients
are serving as guinea pigs in a country that isn't doing the rigorous
lab and human tests that are needed to prove a treatment is safe and
effective.
Noting the lack of evidence, three Western doctors,
undertook their own limited study. It involved seven patients with
spinal cord injuries who chose to get fetal brain tissue injections at
one hospital in China. The study reported "no clinically useful
improvements" — even though most patients believed they were
better. Five developed complications such as meningitis.
Experts
in the West have theories about why some people think they've improved
when the evidence is thin. Some are often getting intensive physical
therapy, along with the mysterious injections; the placebo effect may
also be a factor.
John Steeves, a professor at the University of
British Columbia who heads an international group that monitors spinal
cord treatments, has another theory. Some patients may be influenced by
the amount of money they paid and the help they got from those who
donated or helped raise money.
"Needless to say, when they come
back, what are they going to report to their friends and neighbors?
That it didn't work?" said Steeves. "Nobody wants to hear that."
He and other experts have written a booklet advising patients who are considering such treatments.
Western
doctors discourage their patients from seeking such treatments. They
note that it's impossible to gauge the safety and effectiveness of the
treatments, or even know what's in the injections put into brains and
spinal cords.
Patients and their families say they accept those
risks. They simply don't have time to wait for more conclusive
evidence. For many, the trip to China is a journey of hope.
"It's
one of the only games in town," said Savage, 44, a lawyer who suffered
severe spinal cord injuries after a canoe trip 25 years ago.
Savage
spent 2 1/2 months in late 2006 and early 2007 at a hospital in the
southern China city of Shenzhen to get what he was told were stem cell
injections in his spine from umbilical cord blood. He made the
arrangements through Beike Biotechnology Co., which offers the
treatments at a number of hospitals in China.
Afterward, Savage
said he was able to move his right arm for the first time since his
diving accident; a video made at the hospital appears to show slight
movement. He also said he noticed greater strength in his abdomen and
more sensation on his skin.
Just how many foreigners like Savage
are coming to China for treatment isn't known; and China is only one of
several countries where such techniques are being offered.
Many
Chinese doctors don't wait for results of rigorous testing before
treating patients and they offer what they say are stem cell or other
cell treatments to those willing to pay.
What is known about the
procedures being performed comes from material on their Web sites or
from patients who give detailed accounts of their visits. Little has
been published in scientific journals for other doctors to scrutinize.
The
use of stem cells for treatments isn't new. For decades, doctors around
the world have been using adult stem cells from blood and bone marrow
— and more recently from umbilical cord blood — to treat
cancers of the blood like leukemia and lymphoma and blood diseases like
sickle cell anemia.
Scientists have been exploring whether such
adult stem cells and other cells such as those from the retina or fetal
brain tissue could be used to replace cells lost because of injury or
disease. And they are trying to figure out if there's a way to
stimulate the body's own stem cells to make repairs.
But those strategies are still being investigated in the lab in animals; there have been very limited tests in people.
Whether
any clinics in China are using the more controversial embryonic stem
cells — doctors in some other countries claim to be — isn't
clear. These stem cells are taken from days-old embryos. They can
develop into all types of cells, but research into their usefulness is
in early stages.
Patients seek out these unproven treatments
after hearing about them from other patients, patient groups or Web
sites for the medical companies. The patients' stories posted on the
Internet usually tell of some kind of improvement from the treatments
— slight movements in arms or legs, fewer spasms or tremors, a
feeling of sensation, an ability to sweat.
Chris Hrabik, 21, has
been disabled since a 2004 car crash left him with limited use of his
hands and legs. His father took out a second mortgage on their Oak
Ridge, Mo., home to help pay for $20,000 worth of stem cell injections
at a Beike facility in China.
More than a year after returning
home, Hrabik says he has nearly complete use of his left hand, with
improvement in the right. He can work on his customized 1993 Nissan
240SX, a modified number complete with hand controls and racing seats.
He
said he was able to move his left fingers within days of that first
injection of umbilical cord stem cells into his spinal cord. There's
been little progress since he left China, but he called the incremental
changes significant.
"I just wanted something back, no matter
what it was," said Hrabik, who attributes some of the changes to the
Physical Therapy that he had in China.
Beike founder Sean Hu, who
returned from abroad in 1999 with a doctorate in biochemistry, said the
company has treated more than 1,000 patients, including 300 foreigners
from 40 different countries. The only side effects have been slight
fevers and headaches among a small percentage of patients, according to
Hu.
He said patients with trauma injuries experience the most
dramatic improvements; those with degenerative diseases such as ALS,
also known as Lou Gehrig's disease, tend to improve initially but then
slide back to their former condition within months.
"Patients
shouldn't have their expectations too high," Hu said. "For patients to
think they can walk again may be too much at this stage," he said.
He's
now seeking venture capital to expand his web of treatment centers,
labs and doctors and adapt proprietary techniques from researchers
overseas.
"There is real potential here for China to take the lead in stem cells," Hu said.
Also
offering treatments is Tiantan Puhua in Beijing, a joint venture
between Asia's largest neurological hospital and an American medical
group. Tiantan's sunny, sparkling rooms are a far cry from the dour
facilities and staff at most Chinese hospitals. Diseases treated there
range from stroke and spinal cord injuries to cerebral palsy and
ataxia, a rare neurological condition that can cause slurred speech.
The
hospital says its stem cell injections are combined with daily,
three-hour doses of intravenous drugs designed to stimulate production
of the patient's own stem cells. Physical Rehabilitation and Chinese
medicine are also part of the plan. A standard two-month course of
treatment costs $30,000 to $35,000.
"We want to see actual
improvements," said Dr. Sherwood Yang, head of the hospital's
management team. "We are giving them another option at the highest
level of safety."
Yang contends that 90 percent of patients show
some results, with the rest suffering disabilities that are too far
advanced to respond to treatment.
"We are making no promises," he added. "It's impossible to say exactly how any given patient will respond."
Western
experts point to the lack of documented evidence that cell treatments
have any benefit for spinal cord injuries or degenerative diseases like
Parkinson's.
"All of us in the so-called Western world, if there
was something valid, we'd be the first to be offering it," said
Steeves, the Canadian professor and director of the International
Collaboration on Repair Discoveries, known as ICORD.
Three other
experts were involved in the study that found no improvement in the
seven spinal cord injury patients who went for fetal brain tissue
injections in China. The patients were evaluated before and after their
surgery.
The doctors stressed their observations were no substitute for a larger, more strict investigation.
"People
are looking for a cure," said Dr. Bruce Dobkin, a neurology professor
at the University of California, Los Angeles, School of Medicine, one
of the study's authors. "They may come to do something based more on a
gut feeling. It's like looking for a religious miracle."
Along
with the patients' booklet of advice about exploring experimental
treatments, Steeves and other researchers have drawn up a set of
guidelines on how to do research in spinal cord injuries. Another
researcher, Dr. Wise Young of Rutgers University, is assembling a
network of Chinese medical centers and universities to train
researchers and conduct studies that meet international standards.
Dr.
Michael Okun, medical director of the National Parkinson Foundation,
said his group discourages patients from seeking out experimental
treatments unless they're being done under the most rigorous research
protocols.
"Stem cell therapy ... is a really interesting area
that has a lot of promise for therapeutic approaches. But we're just
not ready to be putting stem cells into people's brains at this point
in time," said Okun.
But such warnings don't dissuade people like
Penny Thomas of Captain Cook, Hawaii. She sought treatment for
Parkinson's disease at Tiantan, where doctors drilled into her skull
and injected what she was told were cells from a donor's retina. One
year later, she said her tremors are almost gone and her medication has
been cut to one-half of a single pill.
"I have no regrets and would do it all over again if need be," said Thomas, 53.
So
would the parents of Rylea Barlett of Webb City, Mo. The family raised
nearly $40,000 from friends and neighbors to spend a month in China at
a Beike facility last summer, hoping treatments would cure their
daughter's blindness. The child was born with an optic nerve disorder.
Dawn
Barlett said her daughter responded to lights shone in her eyes within
a week after the first of a series of five stem cell injections and can
now make out blurry images on TV.
"She had no vision whatsoever before we left," the mother said. "There was no hope otherwise."
The girl's optometrist, Larry Brothers, said: "It truly is a miracle."
But
when pressed for details, he said he detected "subtle differences" in
Rylea's optic nerve after her return from China. Asked if he would
characterize her progress as incremental, he said that "might be too
optimistic."
Associated Press Writer Alan Scher Zagier reported from
Missouri; AP writer Stephanie Nano in New York also contributed to this
report.