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Biological insurance

By MARY JO LAYTON
STAFF WRITER

Dr. Roger Mrowiec placing cord blood units into a freezer at Elie Katz Umbilical Cord Blood Program at Community Blood Services in Paramus.

March 8, 2005 - Minutes after Ryan O'Keefe was born last year, he was already helping others. His mom and dad donated blood from their baby boy's umbilical cord, rich in stem cells, to potentially help someone battle blood diseases like leukemia or anemia.

The boy's gift is stored in the Elie Katz Umbilical Cord Blood Program at Community Blood Services in Paramus, one of a growing number of centers that store cord blood.

Today, parents-to-be have another consideration to add to the list of childbirth preparations like Lamaze classes and painting the nursery. Should they store cord blood for their own private use? Should they donate it to help a stranger battle a disease?

FOR FURTHER INFORMATION ABOUT CORD BLOOD DONATION
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The American Academy of Pediatrics: aap.org
The Parents Guide to Cord Blood: parentsguidecord blood.com
The American Association of Blood Banks: aabb.org

"There was a much greater chance that someone else would need it, so we donated Ryan's cord blood,'' said Christina O'Keefe, a 30-year-old accountant who lives in Ridgefield Park.

Worldwide, 170,000 vials of cord blood are stored for public use. Much more is stored for private use.

Since the program in Paramus began in 1996, 2,100 units have been stored for public use and another 800 have been stored privately for families who keep their child's stem cells as "biological insurance'' to cure an illness in the family should there ever be such a need.

To date, 32 units from the center have been used in transplants. The patients include a 9-year-old boy in British Columbia suffering from acute myelogenous leukemia who underwent a stem-cell transplant with a donation from the center about five years ago.

"He's doing well in school and he's playing |soccer,'' said Misty Marchioni, business and development manager for the program.

There's a growing demand for cord stem-cell transplants, which are painless and less expensive than uncomfortable bone marrow transplants. The cord blood, which remains in the umbilical cord and placenta following birth, takes only a few minutes to extract.

Like the cells in bone marrow, cord blood stem cells make other crucial blood cells that carry oxygen, speed clotting, fight diseases such as leukemia and replace cells killed by cancer treatment.

Public donations are typically free and, once collected, are listed on an international registry for potential recipients.

Some parents consider the potentially priceless source of stem cells to be a lifesaver if that child or a sibling develops a serious illness. A growing number of private companies are offering services to extract and store the blood at a cost of $900 to $1,800 plus an annual storage fee of about $100.

"It's a one-time chance to collect biologically unique and genetically unique stem cells for current and emerging uses in therapy," said Stephen Grant, vice president and co-founder of Cord Blood Registry, one of the country's largest private blood storage companies.

The cord blood of 90,000 newborns from across the world is stored in the company's Arizona lab. Since its inception in 1995, the number of expectant parents participating in the program has doubled each year, Grant said.

"If it's ever needed, it will provide your family member or child with the best possible outcomes,'' Grant said.

So far, 36 stem-cell transplants have been done with cord blood from the registry, Grant said. It was unclear how successful those transplants were.

Cord blood programs are becoming so popular that some experts worry that high-pressure tactics from private storage companies play on a prospective parent's sense of vulnerability.

The American Academy of Pediatrics warns that it's unlikely the blood will be needed for transplant, so "private storage of cord blood as biological insurance is unwise.''

The academy estimates that there's a 1 in 10,000 or 20,000 chance that a child will need his own stored cells. The blood, however, can be used by other family members if there's a match.

Yet even some physicians say it's not a bad idea to store the cord blood, even if there's a remote chance the stem cells will ever be needed.

Dr. Manual Alvarez, the chairman of obstetrics and gynecology at Hackensack University Medical Center, stored blood cells from the umbilical cords of his three children.

"There's a lot of research, especially in the area of children with leukemia, that is promising,'' Alvarez said. "More and more of these pediatric transplant therapies are geared toward umbilical stem cell. It offers some security.''

However, he cautions patients to do their homework to ensure that private companies are accredited through the American Blood Bank Association. He also urges patients to understand that the odds are unlikely that the stored blood cells may actually be needed.

Three years ago, there were 12 storage companies. The number has grown to nearly 30 nationally.

"It's growing for sure,'' said Dr. Zbigniew M. Szczepiorkowski, a Dartmouth Medical School assistant professor and chairman of the standards committee for the American Association of Blood Banks.

Ever since a Paris boy with a nearly fatal anemia successfully underwent a stem-cell transplant in 1988 - he received blood from his newborn sister's umbilical cord - parents cling to these examples of hope.

E-mail: [email protected]

Woman helps Leukemia and Lymphoma Society

Going to the Richmond Celebrates Bicentennial? Watch for Sarah Witt's Team in Training fund-raising booth this week.

Witt, who lives in Richmond, is using the booth to raise money for the Leukemia and Lymphoma Society and its efforts to find a cure for leukemia, lymphoma and Hodgkin's disease. Leukemia is the number one disease that kills children and is the leading fatal malignant disease of men and women age 35 and younger.

Although she will have a booth, her fund-raising efforts are focused on a 26.2 mile Team in Training marathon in October in San Francisco, Calif.

Her goal is to raise $3,500 for the society by running in the marathon.

"I have never run this far," Witt said. "I only began running about two years ago, and the farthest I have run is 13.1 (miles) in Indianapolis in May in the Mini Marathon.

"I saw many runners who were with the Team in Training. I was intrigued about running and raising money for a great cause," she said.

Each Team in Training member of the team is paired with a leukemia or lymphoma patient who serves as inspiration as the runner trains and raises money for the society. The team also provides guidance on preparation, nutrition and injury prevention.

Witt is running in honor of Shelby Batley, a 10-year-old girl who is battling Acute Lymphocytic Leukemia. She was diagnosed with the ailment in August 1999 at age 4 and has been off treatment since April 2002.

Team in Training participants have raised thousands of dollars for the society since their inception in 1986. Several area residents have either been runners or honored team members.

To contribute to Witt's fund-raising effort, visit her Team in Training Web site at www.active.com/donate/tntvirtual/vtntSWitt or send a check made out to the society to Witt at P.O. Box 2053, Richmond, IN 47375.

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