June 26, 2000--When Lisa Taner, 34, learned that she was pregnant, she wanted to donate her umbilical cord blood, a once discarded birth byproduct that she knew could save lives. Not only would she give birth to one child, but by banking her cord blood she might have the opportunity to help another child survive. Or so she thought.
Despite the tremendous promise of cord blood cells in treating disease, it turns out that few public blood banks collect this resource, and private banks charge high fees for the service. In fact, Taner found it impossible to donate her baby's cells -- and is now among the growing chorus of parents who say it's time for that to change.
The Belmont, Calif., woman had read a magazine story reporting that public cord blood banks were accepting donations of this rich source of stem cells (immature blood cells), to treat children ill with leukemia and other cancers. This account, like many others over the last few years, reported on medical studies that had shown that umbilical cord blood transplants were a less-invasive alternative to bone marrow transplants in treating certain diseases in infants and young children.
But upon calling the Cord Blood Foundation -- a local public cord blood bank in the San Francisco area -- Taner received some bad news: The foundation had suspended its public donation program indefinitely. With no federal money and few alternative resources, it could no longer afford to process and store any more cord blood than it had already stockpiled.
Taner then looked to other organizations around the country but found they served only people in their respective regions. Her last remaining option was to pay a private bank to collect and store blood that would then be available only for her own family's use -- defeating her purpose of attempting to help children generally.
"My family was very community-oriented, very volunteer-oriented, and I figured this was something I could do that wouldn't require a great investment of time," the former property manager and math and reading tutor explains. "As I learned more about it, I became even more eager to donate. I was pretty disappointed when I found out it wasn't possible." Ultimately, she decided against private banking.
To Bank or Not to Bank?
Within the last two years, parents like Lisa Taner had come to expect that a network of public banks would be able to store cord blood and save hundreds of children. Yet the expense of establishing such a bank is so high -- an organization can spend between $1 million and $2 million to get up and running -- that few are able to survive financially.
Private cord blood banking, on the other hand, which is funded by individuals who pay for the service, is touted as a form of biological insurance -- a way of harvesting one's own tissues in the hopes of treating some future illness.
The promise of saving a loved one's life is what private cord blood banks are selling to prospective customers. And on the surface, the premise seems reasonable: Parents want to do what they can to ensure the health and safety of their children. Why not save something that will otherwise be discarded?
But collection of the blood, which takes place after the baby's cord is cut, costs as much as $1,500 per sample. The blood is then shipped to the bank's laboratory for screening and freezing. Annual storage fees range from $95 to $100.
Insurance coverage varies for collection and storage fees. Big-name insurers like Aetna U.S. Healthcare and some state Medicaid providers are signing on to pay in full for private cord blood banking in instances where the blood is needed immediately to treat a cancer-stricken relative. Otherwise, parents have to dig deep into their own pockets.
Why bank privately? The majority of the roughly 20,000 clients who have banked their cord blood with the Cord Blood Registry have done so for peace of mind, says Stephen Grant, vice president of communications at the Cord Blood Registry. "We know that stem cells can be effective in treating leukemia and 75 other diseases," says Grant.
Until now, diseases successfully treated with a cord blood transplant include various leukemias and other blood cancers and genetic diseases like sickle-cell anemia and Krabbe's disease. Other illnesses doctors are hoping these stem cells will treat include breast cancer and AIDS.
Children have been the chief recipients of these transplants because the average cord blood collection yields only enough stem cells to provide for a child, says John Fraser, MD, PhD, director of the UCLA Umbilical Cord Blood Bank, one of the participating centers in a five-year, $30 million National Heart, Lung, and Blood Institute (NHLBI) study on the efficacy of cord blood transplants.
Finding the True Risk Levels
Meanwhile, the marketing tactics used by private cord blood banks have come under criticism and investigation.
A study commissioned by the National Institutes of Health (NIH) has found that some private banks exaggerate most families' risks of developing a serious medical condition that will warrant a cord blood transplant.
What's the true risk? Estimates that a child might need cord blood range from one in 1,000 to one in 200,000, according to the American Academy of Pediatrics. The Cord Blood Registry, in five years of operation, says only 14 of its more than 20,000 samples have been used in transplants.
Based on the real risk and the fact that "empirical evidence that children will need their own cord blood for future use is lacking," the respected Academy does not recommend that parents store their child's blood for future use.
Grant at the Cord Blood Registry, however, says talk of statistics misses the point. "People talk about the odds of [privately stored cord blood] being used, that it's an investment that won't pan out. But do you have fire insurance on your home because you're hoping it will burn down? The reality is that nobody wants to use their stem cells," says Grant.
Just Who Is a Candidate for Private Banking?
"We strongly advise families that have a child in the family who has had a transplantable disease to bank privately," says Fraser. When these high-risk families bank privately, they are doing so for use in a sibling and not in the baby whose blood is collected, says Fraser. Why can't a baby use its own cord blood? If that baby develops sickle-cell anemia or leukemia, the disease will likely be present in its cord blood as well.
Another hurdle for public cord blood banking is amassing a sufficiently diverse stockpile of donations for use by the general population. A center must bank 2,000 to 5,000 samples -- again, at a cost of $1,500 each -- before it can even begin placing them in transplant recipients, says Heidi Patterson, national director of the American Red Cross Cord Blood Banking program.
The federal study by the NHLBI hopes to answer questions about the viability and usefulness of cord blood stem cells. Only when the stem cells are proven useful for many people would the government underwrite the massive cost of a national cord blood banking system, researchers say. Which leaves many expectant parents like Lisa Taner with no means of expressing their biological philanthropy.
So as Taner enjoyed her newborn baby Drew, she wrote to newspapers, television programs, and politicians to promote public funding. "If bone marrow foundations are being funded, why can't we get federal cord blood banking funded?" she asks. "It's easier and less costly than bone marrow transplants. It just makes good sense."
