Note:  I noticed in pictures of Penny Thomas that her hair had not be shaved
in the before and after pix.  In her emails to me she spoke often of a
positive attitude.  I seriously doubt that she has received substantial
benefits.
Ray
Desperate Americans seek unproven cell treatments in China
2008-01-04 01:28:37 -
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.
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 Missouri home to help pay for US$20,000 (¤13,600) 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
US$30,000 (¤20,380) to US$35,000 (¤23,780).
«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 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 Missouri. The family raised nearly
$40,000 (¤27,170) 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.

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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