Cord blood: Its promise is still unrealized

High storage fees, private banks hinder efforts to create a national system

August 01, 2004|By Erika Hobbs | Erika Hobbs,SPECIAL TO THE SUN

Baltimore mother Kate Goldsborough is spending thousands of dollars to store umbilical cord blood she hopes her three sons will never use.

Eighteen-year-old Megan Cardy of Germantown knocked her lethal leukemia into remission, thanks to a stranger's cord-blood donation.

Both women believe in the life-saving potential of stem cells found in umbilical cord blood - cells prized for their ability to become other cells.

Goldsborough, whose family has a history of cancer, set aside her children's cord blood for its future disease-fighting potential. Cardy, who will graduate from high school next year, received cells from a public cord-blood bank four years ago during a transplant.

Researchers use stem cells from cord blood to treat as many as 70 illnesses - from leukemia to lymphoma - and the cells have the potential to treat other conditions such as Alzheimer's and diabetes.

Inspired by the possibilities of stem cell research, families like the Goldsboroughs are paying private companies to collect, freeze and store their babies' cord blood.

It's a kind of "biological life insurance," Goldsborough says. "I may never use it, but it's worth every penny."

At least 120,000 people have banked cord blood, but the question of whether it's a good idea or not is much debated. Meanwhile, private facilities are growing, and governmental squabbling and lack of funds has limited efforts to build a national system that would simplify the process for public donors and recipients.

Cord blood stem cells are often confused with stem cells culled from human embryos. Embryonic stem cells have the ability to become any of the more than 200 different cells in the human body. Because they involve embryos, however, research using them has been restricted by the Bush Administration.

Cord-blood stem cells are different, and have a more limited capacity to become other cells, but they are still used to great effect in many transplant operations.

Most cords discarded

Despite this potential, and the fact that collecting cord blood is a simple procedure, about 95 percent of the umbilical cords from roughly 4 million American births are thrown out every year, according to research from the National Marrow Donor Program, a nonprofit registry for bone marrow and cord blood patients and donors.

Blood from about 1 to 2 percent of umbilical cords is stored in private banks. About 77,000 units of cord blood are scattered among the country's 18 public banks, the donor program's research shows.

Critics say that behind the push to bank cord blood privately are for-profit companies that prey on new parents' fears. Advertisements for the service regularly appear in doctors' offices and parenting magazines.

Private banking is expensive and helps only the wealthiest families, critics add. Moreover, private banks detract from efforts to create a national network, and also from the relatively few public facilities that help people like Megan Cardy.

Advocates say that private banks fill a need.

"All insurance is based on fear or risk aversion, but ... it's really about your desire to protect the things you love the most from the things you cannot control," said Steve Grant, vice president of communications for Cord Blood Registry, a California-based private banking facility that is one of the largest in the nation.

Many doctors believe that only families with histories of severe disease or inherited disorders such as leukemia should privately bank blood.

According to Curt Civin, professor of oncology and pediatrics at Johns Hopkins University School of Medicine's Sidney Kimmel Comprehensive Cancer Center, the odds that the average baby will ever use its banked cord blood are about four in 10,000 - too low to justify the cost.

"If a family is collecting it as biological life insurance, the data suggests strongly that it is not needed," says Joseph M. Wiley, chairman of the department of pediatrics at the Children's Hospital at Sinai in Baltimore.

It would be more effective to donate cord blood to a public bank, many doctors say. But so far no national registry for cord blood exists, and cost is one of the reasons.

Donations turned away

Mary Halet, cord blood manager for the National Marrow Donor Program, estimates that it would take about $2 million to build a new public bank. Some public facilities, strapped for operating funds, have even turned away cord-blood donations because it's too expensive to store it.

In Maryland, there are no public or private cord-blood banking facilities, which is why Goldsborough stores her cord blood at Cord Blood Registry's Arizona facility. She paid about $1,800 in initial costs and now pays more than $100 in yearly fees.

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