Umbilical cord blood bank envisioned
Effort fights blood diseases
By Tom Kisken (Contact)
Wednesday, November 7, 2007



About 10,000 Americans need stem cell transplants from bone marrow or umbilical cord blood donated by someone outside their families. About 7,200 won't get them. They'll likely die.

The statistics fuel the push for donations and drive plans for a yet unfunded public umbilical cord blood bank in California. The implications for people with leukemia and some 70 other blood diseases explain why Jeremy and Erin Bell of Newbury Park are paying more than $3,000 "just in case."

The Bells' twins, Madeleine and Vivienne, were born Oct. 29, both sporting full heads of hair. Moments later, doctors and nurses used long needles to extract blood from the umbilical cords. The samples will be frozen and stored at a private banking company in Arizona that charges about $1,500 for each baby and about an additional $100 apiece annually for storage.

Erin Bell sees the blood samples as insurance that has at least a chance of saving the twins if one or both of them gets cancer. Her sister died of leukemia at the age of 5.

"There's no reason for us to think it's hereditary," she said. "At some point, you realize anything can happen."

Devoid of the debates surrounding stem cells from embryos, blood-producing stem cells from umbilical cords and bone marrow are transplanted and used to treat dozens of blood diseases, including leukemia, lymphoma, sickle cell anemia, Lou Gehrig's disease and some disorders where an immune system assaults rather than defends the body.

Stem cells are not a guaranteed cure, but they offer a chance.

Reliance on national registry

"The lack of a transplant usually means death imminently," said Mike Boo of the Minnesota-based National Marrow Donor Program. He rattled off the barriers that prevent people from getting transplants: no insurance, no support system, no way to get to a transplant center, and, most of all, no match.

People with brothers or sisters have about a 25 percent chance that the siblings have stem cells that could be used in transplants. If not, they rely on a national registry run by the marrow donor program that doesn't have nearly enough supply despite a $69 million federal program designed to increase it.

Some people find matches, like Hailey Joy Kent, the Simi Valley 1-year-old who had a transplant in May and continues an up-and-down fight against a rare form of leukemia. Others do not.

"We probably get about 50 to 60 patients a year who look for donors, and out of those, probably 10 to 20 don't find a match," said Dr. Ami Shah, associate director of a stem cell transplant program at Childrens Hospital Los Angeles.

1,200 need transplants

A rising number of parents contract with private companies to bank their own children's bone marrow. Others talk about it but are put off by an initial charge that can be as much as $2,000.

"It's a great idea if money's no object," said Dr. Gary Nishida, an Oxnard obstetrician gynecologist.

Nishida said the chances of families having to face leukemia or another disease that can be treated with the stem cells are small.

But officials at the national registry say about 1,200 Californians need transplants each year.

Filmmaker Anthony Portantino learned about stem cells a decade ago when a neighbor's son received a transplant for leukemia. When his own daughter, Bella Rose, was born, he wanted to donate her cord blood, but there was no system in place. He had to find a private company, deliver the company's tools to the hospital and even pack the vial of blood in ice.

"I said to myself, This is really stupid,'" he said. "We have the ability to cure 70 diseases and we don't collect that blood."

Portantino, a Democrat from the Pasadena area, was elected to the California State Assembly last year. He wrote a bill proposing a statewide public umbilical cord blood bank with a goal of dramatically expanding the supply of stem cells. It passed the Legislature and last month was signed into law by Gov. Arnold Schwarzenegger.

Stem cell experts say a public blood bank will provide a needed boost, in part by creating a greater diversity of donor samples, helping people of different ethnicities who often face impossible odds.

There are problems. The blood bank isn't scheduled to begin until 2010. Even more daunting, the Legislature hasn't allocated any funding.

Portantino remains optimistic and talks about leveraging money from the state, the federal government and other sources. But others worry.

"There are too many patients dying. The time to act is now," said David Carmel of Stemcyte, an Arcadia company that banks cord blood for the national registry.

'The process is so new'

Amber McCarty is taking things into her own hands. The Oxnard woman works for the Leukemia & Lymphoma Society, raising money and awareness. She shaved her head and donated her reddish-brown hair to cancer patients.

When her third child is born in about four months, she'll donate the umbilical cord blood to the national registry. Though private banking is expensive, donations to the national registry are free.

"There are millions of (umbilical) cords that are thrown out every day in childbirth because most patients don't know that the registry exists," she said, trying to explain why more people don't donate. "The process is so new. ... People have a fear of the unknown."

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For more information
People who want to know more about donating umbilical cord blood should go to the National Marrow Donor Program at www.marrow.org or call 800-627-7692.