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PARKINSN  August 2003, Week 1

PARKINSN August 2003, Week 1

Subject:

ARTICLE: Biological Safety Deposit

From:

Murray Charters <[log in to unmask]>

Reply-To:

[log in to unmask]

Date:

Mon, 4 Aug 2003 04:53:17 -0700

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (161 lines)

The Centre Daily Times, PA
Monday, Aug 04, 2003

Biological safety deposit
BY MARIE MCCULLOUGH
Knight Ridder Newspapers

PHILADELPHIA - (KRT) - In 1988 in Paris, a boy with a life-threatening form of anemia was saved by a new, experimental
therapy - a few ounces of blood from his newborn sister's umbilical cord.

Soon, what had been just a waste product of childbirth was being hailed as a therapeutic miracle. Facilities for
freezing and storing umbilical cord blood began to spring up around the world.

Now, 15 years after that first "cord blood transplant," it is clear the procedure has several advantages over a bone
marrow transplant, the older, more common way of rebuilding damaged blood and immune systems.

But as often happens with breakthroughs, marketing has gotten ahead of science.

Cord blood transplants remain rare and experimental - worldwide, there have been fewer than 2,500 - and the vast
majority are arranged through public, nonprofit cord blood storage banks, which operate like blood banks. Nonetheless,
more and more parents are paying commercial storage companies to preserve their newborns' cord blood, attracted by
advertising touting a "once in a lifetime" opportunity to buy "biological insurance."

The chance of needing privately stored cord blood is so remote that the American Academy of Pediatrics has come out
against routine private banking, and several leading transplant physicians have criticized the practice as "unrealistic
and deeply exploitative."

Still, commercial companies now have well over 100,000 cord blood specimens, at least twice as many as public banks.

Parents who can afford private storage - about $1,000 initially plus $100 a year - consider it a small price to pay for
a sense of security.

Even some experts feel that way. Transfusion medicine specialist Zbigniew Szczepiorkowski, chair of a committee of the
American Association of Blood Banks, which offers voluntary accreditation to cord blood banks, said he considers
private storage "medically unjustified." Yet he and his wife are paying to do just that with their son's cord blood.

Cord blood is medically valuable because, like bone marrow, it is rich in blood stem cells, the precursors of red blood
cells, infection-fighting white blood cells and clot-forming platelets.

A patient whose own blood cells have been destroyed by high-dose chemotherapy and radiation can be given a transplant -
actually, it's more like a transfusion - of stem cell-laden bone marrow or cord blood to resupply his entire blood and
immune systems.

While a bone marrow or cord blood transplant is a risky last resort, the procedure has been used successfully to treat
about 70 genetic, blood and cancer-causing disorders, including leukemia, lymphoma, aplastic anemia and sickle-cell
anemia.

It is crucial that the transplanted cells have immune proteins that closely match the patient's own. If not, the
transplant may be rejected or, worse, attack the patient's tissues.

With some diseases in adults, this tissue-matching problem can be avoided by removing some of the patient's own bone
marrow before chemotherapy, then putting it back to rebuild the blood supply. Such a self-transplant is ultra-rare with
cord blood, however, because many childhood blood disorders are inherited; a child's own cord blood would likely
reintroduce the disease.

Frances Verter, a Princeton-trained astrophysicist, learned about all this the horrible way - by losing her first child
to leukemia, a blood cancer.

Shai Miranda Verter spent much of her not-quite five years in hospitals, including Children's Hospital of Philadelphia,
where she received a bone marrow transplant. Despite a brave fight, she died in 1997.

In 1998, Verter became pregnant with her second child. She decided to privately store the precious drops of cord blood,
mostly out of fear and grief.

"I knew pediatric cancer ... wasn't supposed to happen again, but I was just being very paranoid because a one-in-five-
million disease struck my first child," recalls Verter, who works at NASA's Goddard Space Flight Center in Greenbelt,
Md.

But getting basic, unbiased information about the nation's cord blood banks was tough.

Ultimately, she assembled an encyclopedic consumer's guide to cord blood storage options. As a tribute to Shai, and to
fill an obvious void, Verter maintains it on a Web site, www.parentsguidecordblood.com. Numerous public and private
banks now link to it.

Verter does not offer recommendations. Personally, though, she is a fan of private storage. Her data show private U.S.
companies have had just 71 transplants. Still, she believes that someday scientists will figure out how to use blood
stem cells to regenerate damaged nerves, muscles and other tissues - thus making a hoard of perfectly matched stem
cells invaluable.

But as her Web site explains, stem cell science is not there yet, not even close.

Only the primitive stem cells found in early embryos are known to be able to turn into all types of tissues, and
scientists have barely begun to understand how.

That is not the impression private banks foster.

At CorCell - a Philadelphia-based, eight-year-old, private bank that has never had any of its 7,000 cord blood units
transplanted - president Marcia Laleman said: "There is research going on that demonstrates applications in diabetes,
lupus, Parkinson's and other diseases. ... All our advisers say the uses will explode in the next five to 10 years."

While that is debatable, cord blood does have advantages. It is simple to collect and retrieve from storage; a
registered bone marrow donor, in contrast, must be located and go through a painful procedure when the marrow is
needed. Cord blood stem cells also multiply more rapidly, are more forgiving of imperfect tissue matches, and are less
likely to attack the patient's own tissues than marrow stem cells.

The problem is that all blood-making stem cells, no matter the source, have limitations.

Unlike embryonic stem cells, blood stem cells cannot multiply in a culture dish. (At least one group of researchers
claims to have overcome this problem, but the jury is out.) Also, scientists cannot distinguish stem cells from other
cells in cord blood or bone marrow; they use white cell surface proteins as a rough indicator of the presence of stem
cells.

Compounding these problems, umbilical cords simply do not yield much blood. Public storage banks generally reject a
cord blood specimen smaller than 40 milliliters - about three tablespoons - because it is unlikely to contain enough
stem cells to transplant even to a small child. (To ensure an ample number of stem cells for an adult transplant, bone
marrow is preferred.)

Although the amount of cord blood is crucial, some private banks do not set a minimum for storage.

"I've had calls from families where they saved 14 milliliters or seven milliliters. It's worthless," said cord blood
transplant pioneer Joanne Kurtzberg, a Duke University specialist in pediatric cancer and blood diseases.

The biggest question - how likely a child or adolescent is to ever use his own stored cord blood - draws wildly
differing estimates. The most popular seems to be 1 in 10,000.

To put this in perspective, a person is more likely to be killed by lightning (1 in 9,000).

There is a slightly higher chance of use by a sibling. In fact, the American Academy of Pediatrics says that if a
family already has a child with a disease that may require a transplant, it makes sense to bank the cord blood of
subsequent babies.

However, the chance of a tissue match between two siblings is only about 25 percent.

The chance of a child finding a cord blood match in the nation's public banks is 75 percent, and even higher if
international databases are searched, said Dennis L. Confer, chief medical officer of the National Marrow Donor
Program, the country's largest network of public blood, bone marrow and cord blood banks.

One of the public network's members is the seven-year-old New Jersey Cord Blood Bank, housed in the Coriell Institute
for Medical Research in Camden. This month, the bank proudly announced that four of its 1,500 cord blood units have
been used, bringing in revenue from health insurers who cover transplants. The bank has now begun paying back the $5
million state loan that created it.

The growth of nonprofit cord blood banking is an important public service, experts agree, but it is facing financial,
political and regulatory obstacles. New Jersey's bank, like most of the nation's other 17 public banks, is far from
breaking even. It recently stopped accepting cord blood donations from women delivering in North Jersey hospitals,
although it continues to collect at Cooper Health System, Virtua Health, and Our Lady of Lourdes Hospital, all in South
Jersey.

"If there were lots of money to build this collection, we'd love to collect at more hospitals," said David P. Beck,
Coriell Institute president.

Similar problems hampered the bone marrow transplant system in the late 1980s, before federal legislation brought order
- and more funding - to it. Confer is optimistic that, as the therapeutic value of cord blood grows, support for public
collection will grow.

That, in turn, would open doors for the growing numbers of expectant parents who would like to make a tiny donation
toward children's health.

"I think the untapped reservoir of people who want to (store cord blood), but don't want to spend money, is enormous,"
Verter said.

---

SOURCE: The Philadelphia Inquirer / The Centre Daily Times, PA
http://www.centredaily.com/mld/centredaily/news/6454214.htm

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December 1997, Week 5
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