Parkinson's advocate Peggy Willocks is one of the people interviewed in
this article about  stem cell research.

FROM: GoTriCities Wellness
"How far for a cure?
By: Leigh Ann Laube

"Jim Lawson is on call 24 hours a day, seven days a week. He’s not a
doctor or a chief executive. He’s a husband to Barbara who can no longer
care for herself due to Multiple Systems Atrophy.

The Lawsons were on vacation in 1997 when they realized something was
wrong with Barbara.

“We were at Myrtle Beach, and she was standing in the surf and she
couldn’t maintain her balance,” Jim said.

She was diagnosed with MSA, a progressive neurodegenerative illness that
causes certain brain areas to shrink. Predominant symptoms include
progressive ataxia or clumsiness and difficulties with balance. There may
also be slurring of speech and difficulty walking, along with other
symptoms.

“I have lost a little bit of everything,” Barbara said. “I’m weaker,
shakier and it takes a great deal of effort to walk.”

Because she’s incapacitated, Jim is her near-constant companion. He will
take a two-way radio with him when he makes a quick trip to the store.
When he needs to be gone longer than that, Barbara rides along.

“I live with it every day,” Jim said.

MSA symptoms are similar to those of Parkinson’s disease patients, but
MSA progresses more rapidly and patients are less responsive to
Parkinson’s drugs. Like Parkinson’s, there is no cure for MSA, but the
Lawsons hold out hope that the cure may lie in current — and
controversial — stem cell research.

“We have searched for the magic bullet since late summer 1997,” Jim said.
“We have been to the NIH [National Institutes of Health] in Washington,
Bowman Gray [School of Medicine in North Carolina], Mayo Clinic,
Vanderbilt.”

Scientists believe that stem cells may hold the key to curing diseases
like Parkinson’s, Alzheimer’s and Type 1 or juvenile-onset diabetes.

Parkinson’s is caused by a progressive degeneration and loss of dopamine,
which leads to tremor, rigidity and abnormally decreased mobility or
hypokinesia.

Because stem cells have the ability to develop into any of the different
cell types that make up the tissues and organs of the body, scientists
believe they can become dopamine cells for Parkinson’s patients, bone
marrow cells to treat cancer, and insulin producing islet cells for
patients with Type 1 diabetes.

In adults, stem cells are found in the skin, liver, bone marrow and
muscles, but scientists have long believed that the controversial
embryonic stem cells hold the greatest potential.

“Stem cell research is going to have as much impact ... as the discovery
of antibiotics,” said Dr. David Stevens, chief executive officer of the
Christian Medical & Dental Associations, headquartered in Bristol, Tenn.
“This is taking us into a whole new area of medicine called regeneration.
Stem cells hold enormous potential, but where do you get the stem cells?”

Removing stem cells from a blastocyst (a fertilized egg four days after
conception) means the destruction of a potential human life — depending
on when you believe human life begins — which many find ethically
unacceptable.

Stevens believes that human life begins at the uniting of the egg and
sperm, and that destroying embryos means destroying human lives.

“Do we sacrifice one human being for the life of another?” he asked.

Peggy Willocks, who was diagnosed with Parkinson’s nearly a decade ago,
believes that a life is not a life until the embryo is implanted and
growing in the womb.

“And if we say it is ‘potential life,’ then so are the sperm and ovum of
every adolescent or child-bearing person walking around today. I am a
Christian and have searched the Bible for even a hint of disapproval of
using embryonic cells outside of the womb,” Willocks said.

“Some say we are playing God when we determine what is to be done with a
fertilized egg. Then we are playing God every day with birth control
pills. ... We balked when in-vitro fertilization was introduced in the
U.S. and now it is a common practice sanctioned by many religious groups.
People had an outcry about penicillin when it was first introduced,
saying the mold put into our bodies was a major issue. Or how about
X-rays or CAT scans — all of these could have been stopped, and where
would science be without them?”

Willocks, a former elementary school principal, believes stem cells hold
great potential for a cure for Parkinson’s.

“Stem cell research has shown promise in areas never imagined. Animals
tested with Parkinson’s have been cured. Spinal cords have been
regenerated. Tissue from the heart, brain and skin has been made like
new,” she said.

“We proceed with much research on far less positive results. So to say
let’s not continue that type of research would be asinine. But to put all
your eggs — no pun intended — into one basket is likewise not wise. Stem
cell research, like any other, will never be 100 percent effective. It is
going to continue abroad — and could be done in the U.S. under strict
regulatory processes.”

Willocks is the Tennessee state coordinator for the Parkinson’s Action
Network (PAN) in Washington, D.C., and was recently named coordinator of
the year by the network. For the past five years, she has led the Johnson
City Parkinson’s support groups. She is a spokesperson for the American
Parkinson’s Disease Association, and is a member of the Parkinson
Pipeline Project, a program to accelerate the regulatory process for new
drugs and treatments for Parkinson’s.

In 2001, under pressure from patient groups that favor the research as
well as opponents who feel the work is unethical, President Bush
announced that the federal government would pay for a limited amount of
research on stem cells from human embryos.

The president’s decision permits federal funding of research using the
more than 60 existing stem cell lines that have already been derived, but
did not sanction or encourage the destruction of additional human
embryos.

No federal funds will be used for the derivation or use of stem cell
lines derived from newly destroyed embryos, the creation of any human
embryos for research purposes, or the cloning of human embryos for any
purpose.

In May, however, the National Institutes of Health reported that only 11
human embryonic stem cell lines are available for research, and the
finding has prompted a call by the Parkinson’s community, led by the
Parkinson’s Action Network in Washington, to lift the restriction placed
on the use of federal funds to develop new cell lines.

Under the circumstances, Stevens said, Bush made the best decision he
could.

“Bush didn’t want to use federal money to destroy more lives,” he said.

Willocks believes that the president had to “ride the fence. Now that
he’s done that, he needs to review such rigid guidelines,” she said. “The
research will continue to be done in the private sector — and in other
countries. There should definitely be strict regulatory processes in
place, but stem cell research has nearly come to a standstill since his
limit to cell line accessibility.”

The Lawsons, who also favor such research — especially on embryos that
would otherwise be discarded — don’t understand why Bush placed the
restrictions he did.

“If the person doesn’t want the child, give some of your body that is
potentially lifesaving,” Jim Lawson said. To those opposed to the
research, he asks, ‘How would they feel if they walked in [Barbara’s]
shoes?’ It’s been a very slow, progressive disease and that makes me an
advocate.”

According to Focus on the Family Citizen magazine, nearly 350,000 embryos
are being stored in fertility clinics nationwide intended for patients’
future use. Of those, more than 8,800 are destined for destruction.

An average in-vitro fertilization couple could produce eight embryos. The
surplus embryos are stored — for between $500 and $1,500 a year — because
people are reluctant to donate their embryos to other couples, yet don’t
want the embryos destroyed by research.

“How can we say that in-vitro fertilization is permissible, but you can’t
use the unused embryos created?” Willocks asked. “Flush away possible
cures for cancer, diabetes, Alzheimer’s, etc? I just don’t get it.”

However, researchers are now finding that adult stem cells may be as
versatile and effective as those taken from an embryo.

In a study presented in April at the annual meeting of the American
Association of Neurological Surgeons, adult neural stem cells taken from
a patient’s own central nervous system were successfully used to treat
Parkinson’s disease. The research demonstrated that adult stem cells
could be coaxed to become the crucial cells that produce dopamine and
that those cells could function after implant.

“We’re farther along the pathway with adult stem cells, doing some
trials,” Stevens said. “With embryonic stem cells, we’re still in the
lab.”

Their potential is also the stems cells’ greatest flaw, Stevens said.
“There are 210 types of tissue. They have a lot of potential, but it’s
also their biggest problem — getting that pure culture, going down the
right path.”

Currently, the drug levodopa is standard treatment for Parkinson’s
patients, but research published recently in the Annals of Neurology has
shown that the drug ropinirole is more effective at slowing down the loss
of nerve function associated with the early stages of Parkinson’s and
less likely to cause side effects. Ropinirole was found to be not as
effective as levodopa at controlling the symptoms of the disease.

In August 2000, Willocks became one of six people in the world to undergo
an experimental treatment for Parkinson’s disease. At Emory University
Medical Center in Atlanta, doctors drilled tiny holes in Willocks’ head
and inserted spheramine, which consists of normal human cells that
provide dopamine attached to microcarriers and is designed to deliver
dopamine to the regions of the brain affected by the disease.

“I am convinced that I would not be as functional today if I had not had
the surgery,” Willocks said. “The first year results for the group of six
showed everyone with a nearly 50 percent improvement over baseline data.
After three years, I believe it still runs at 40 percent and, remember,
we are dealing with a degenerative illness.

“I went into it saying, ‘If it does nothing but delay progression, then I
will consider it successful,’ and it has done that. Phase II is currently
under way with plans to recruit 68 candidates for the surgery. Both sides
will be done — I only had one side of the brain done — at multi
facilities: Emory; Baylor in Texas; Rush [Rush-Presbyterian-St. Luke’s
Medical Center] in Chicago; Tampa, Fla. This will be a double-blind
controlled design, meaning half of the participants will receive the
cells [spheramine] and half will not. Seems a bit unethical to me, but
nonetheless it’s what the FDA requires.”

No one knows for sure why Barbara Lawson developed Multiple Systems
Atrophy — it’s theorized that hers could be a result of a wheat allergy —
but the Lawsons are hopeful that a cure is on the horizon.

“You’re always hopeful. You have to be hopeful. You have to believe
there’s a magic bullet out there,” Jim Lawson said. “The only thing left
for her, really and truly, is that stem cell.”

Regenerative medicine, Stevens said, is much like Columbus stepping foot
in America.

“He knew he had something, but he didn’t have any idea what it was,” he
said. “The potential for what we can do in this area ... I don’t think
we’ve begun to understand. Science knows no end to where it’s going.
Science is advancing faster than we can put ethical guidelines in place.”

http://www.gotricities.com/wellness/article.dna?action=features&idnumber=
030728133636

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