LIFEBLOOD BANKING UMBILICAL CORD STEM CELLS FOR TREATMENT OF DISEASES SEEMS LIKE GOOD INSURANCE - BUT DOES THE POLICY REALLY PAY OFF?

Byline: Mariko Thompson Staff Writer

In the gap between scientific theory and certainty, the umbilical cord no longer is simply the nourishing tie between mother and baby. The life- giving cord - specifically the blood inside - has become either an insurance policy or a gamble, a medical miracle waiting to happen or overblown hype.

Already inundated with decisions about delivery, an increasing number of expectant mothers are faced with the question of whether to bank their umbilical cord blood. Often found in waiting rooms or included in packets from the obstetrician's office are brochures explaining how stem cells in cord blood may be a potential cure for life-threatening diseases.

The immature stem cells from cord blood have been used to treat leukemia, lymphoma, and other blood cancers and genetic conditions that typically require a bone marrow transplant. Cord blood also has been touted as a future antidote for everything from cancer to Alzheimer's to AIDS.

``It's a technology that's still in its infancy,'' said Dr. Michael Kanter, director of the blood bank and a pathologist at Kaiser Permanente in Woodland Hills. ``It seems promising. But this is still considered quasi- experimental.''

Kaiser Permanente in Woodland Hills is one of a few Los Angeles County hospitals that has linked with StemCyte, a cord blood bank in Arcadia that's a member of the National Marrow Donor Program network. The units donated to the network become part of a public registry.

There are only a few dozen banks participating in the NMDP network nationwide. Most cord blood banks are for-profit companies charging annual fees to parents. That's where cord blood banking becomes problematic, with critics concerned that such companies play on parents' fears.

Cost vs. risk

Most companies charge a registration and processing fee that ranges from $500 to $1,300, plus an annual storage fee that typically runs about $100. Experts say the likelihood of a family needing to use their own cord blood is slim. According to American Academy of Pediatrics guidelines, the odds range from 1 in 1,000 to 1 in 200,000. The organization doesn't recommend private storage unless the family medical history demonstrates a potential need.

``It puts families in a quandary,'' said Dr. Evan Snyder, professor and director of the stem cell program at the Burnham Institute in La Jolla. ``There is no guarantee. You have to be very careful about companies that try to oversell this and don't accurately reflect what the controversies are.''

With private storage, there's no way to be sure the cord blood has been properly handled and stored or whether the company will still be in business in five or 10 years. When the National Marrow Donor Program accepts cord blood banks into its network, the organization requires documentation of training and conducts an evaluation of the facilities, said Dr. Dennis Confer, NMDP's chief medical officer.

``I don't know how you'd duplicate that as a consumer trying to evaluate different banks,'' he said.

Despite the risks, private storage remains the best option for families who consider themselves likely to need their own cord blood, Confer said. Though donors to the public registry have access to their sample should they need it in the future, only about half of the donated cord blood units are of sufficiently high quality to save, Confer said.

A Woodland Hills mother who recently gave birth chose private storage because of her family's extensive history of cancer, including breast, prostate, skin and lung. The woman, who asked that her name not be used for reasons of medical privacy, has stored the cord blood of her two children at California Cryo-Bank in Santa Monica.

``Down the road, who's to say what the options will be for those who did the cord blood collection?'' she said. ``That's my hope, that it will be a cure-all. It's almost like buying insurance. I never wanted to second guess myself.''

That pay-off may never come. There is still only a surface knowledge of what happens to these stem cells and how great a benefit they may yield, Snyder said.

``We're trying to get to the heart of this, to really understand the fundamental biology and to figure out if there is a mechanism by which these cells could be used - if not for all diseases, then which diseases,'' Snyder said.

Prenatal planning

Whether expectant mothers discuss cord blood banking with their physicians varies from hospital to hospital, obstetrician to obstetrician. At Kaiser Permanente in Woodland Hills, pregnant women receive a prenatal handbook that includes information on banking and the donation program with StemCyte.

``We thought this was something that would help the community and might provide an opportunity for some of our moms,'' Kanter said.

Dr. Joie Russo, an obstetrician at Encino-Tarzana Regional Medical Center, did her residency training at a Brooklyn hospital with a public cord blood collection program. She discusses the pros and cons with her patients, many of whom have already heard about banking through friends or the media.

``I'd say about 20 percent of my patients are doing private cord blood storage,'' Russo said.

Expectant mothers must sign a consent form and make arrangements to collect cord blood several weeks prior to delivery. For mothers donating to the public registry, collection is free. As with traditional blood donation, girls younger than 18, mothers with multiple births, people with certain medical conditions and those who have engaged in high-risk behaviors with drugs or sex are excluded, said Richard Krieg, chief operating officer of StemCyte.

After the baby's birth, the umbilical cord is clamped and cut. The blood inside the cord is emptied into a blood bag or vial. The units are then frozen and stored in liquid nitrogen. It's not yet known how long the cord blood remains viable. Cord blood stored for 15 years has proved to be effective, Krieg said.

Since the National Marrow Donor Program created its network in the late 1990s, more than 25,000 units of cord blood have been collected. Worldwide, an estimated 90,000 units are part of public cord blood registries. That's just a fraction compared to the number of adult bone marrow volunteers, which stands at 4.8 million for the NMDP and 7 million worldwide.

Cord blood has several advantages over bone marrow. Recipients who receive cord blood cells are less likely to reject the transplant. And unlike bone marrow, cord blood doesn't have to be an exact match for the recipient. The downside is that its use is limited to children and small adults because its relatively small cell dose would not be enough for a larger person.

Experts still debate the optimal number of cord blood units needed for an international registry. But the ideal registry likely would contain 250,000 to 500,000 units, compared to 10 million for adult bone marrow, Confer said.

The NMDP facilitates the majority of cord blood transplants in the United States. Last year, the NMDP network assisted in 2,000 transplants, with about 100 using cord blood, Confer said.

Life-saving procedure

For the LaRue family in Valencia, public registries saved the lives of two of their boys, Blayke and Garrett. In 1995, 13-month-old Layne LaRue died from a rare immunodeficiency disease called X-linked lymphoproliferative syndrome. Blayke, 1 month old, and Garrett, 3 1/2 years old at the time, were diagnosed with the same disease. Only the oldest LaRue boy, Aaron, managed to elude what appeared to be a fatal condition.

Blayke and Garrett were among the first in the world to undergo a transfusion with cord blood found through public registries in New York and Germany. Almost seven years later, the boys remain disease-free and enjoy typical rough-and-tumble childhood pursuits such as BMX biking and snowboarding.

``They're my little miracles,'' said Teresa LaRue, the boys' mother. ``Our last testing was in December. They continue to do phenomenally well. We're shocked and pleased and blessed every day.''

Stories like the LaRues' inspired freelance writer Michelle Hoffman of North Hills to opt for donation. Pregnant with her second child, she researched private storage and then chose to donate through the Kaiser Permanente partnership with StemCyte.

``I looked at the big picture,'' Hoffman said. ``Here you are potentially throwing away a life-saving resource and all you have to do is fill out a form. We could extend the quality of somebody's life.''

While doctors and scientists agree that more public collections are needed, particularly from families of minority groups, the number of banks accepting donations isn't likely to increase soon. The fact that the Food and Drug Administration has not yet licensed cord blood for transplants is a major obstacle, said the NMDP's Confer.

``When they do that, that will open the door for better federal funding to support cord blood banks,'' he said. ``Right now, it's a Catch-22. Cord blood has not yet been recognized as a legitimate blood stem cell source. That makes it difficult for the government to put more money in public banks.''

Until that day, parents will continue to wrestle with whether to use private storage or forgo collection altogether. No parent wants to feel like she sacrificed her child's health over a few dollars. But Snyder says the majority of parents shouldn't fret too much about the decision.

``By the time we know enough to ensure cord blood is or is not a useful approach, there will be alternative approaches for harnessing stem cell biology,'' he said.

CAPTION(S):

3 drawings

Drawing:

(1 -- cover -- color) BANKING FOR THE FUTURE

Umbilical cord blood has potential to save young lives

(2 -- 3) no caption (Test tubes and Vault door)

Jon Gerung/Staff Artist