Voshte Gustafson was just three months pregnant when she got the first brochure in the mail urging her to spend $2,000 to collect her newborn’s umbilical cord blood as a hedge against future illness.
Now that the 31-year-old Seattle woman is rapidly approaching delivery, the barrage of glossy flyers has ballooned, warning repeatedly that she may have just one chance to save her baby’s life — before it even begins.
“A lot of the companies prey on the fact that your kid is important to you,” said the dad-to-be, Kiley Gustafson, 30, who estimates the couple have received 25 private cord blood banking pamphlets in the past several months. “I understand enough about it to know what they wanted to do.”
Like all the other parents of the more than 4.3 million babies born in the U.S. last year, the Gustafsons will have to decide what to do with their child’s cord blood, a rich source of stem cells, the building blocks of blood that can potentially be used to treat certain cancers and other diseases.
The vast majority of those parents — about 97 percent — will do nothing, and the umbilical cord and the cells it contains will be discarded as medical waste.
The tiny fraction that remain, however, will be caught in the sharp debate between private cord blood firms vying to cash in on an estimated $1 billion industry and public registries trying to boost diverse donations to fuel research and save lives in the community at large.
Critics claim that private cord blood banks exploit expectant parents’ worries using emotion-laden advertising and spurious statistics to scare them into buying expensive biological insurance they’ll likely never need and may not be able to use.
In some cities, a mom-to-be can’t get out of an upscale maternity store like A Pea in the Pod without dodging a pitch — and a brochure — touting private banking.
The problem is, the advertising often oversells the potential for cord blood use, said Dr. Brandon Triplett, medical director of the St. Louis Cord Blood Bank, who performs 15 to 20 transplants a year. Although cord blood stem cells are easier to match and more convenient to use than bone marrow cells, the uses remain limited. Worldwide, only about 2,000 cord blood transplants are performed annually, though the number appears to be growing.
“There are very few conditions that we can fix with cord blood,” said Triplett. “The vast majority of the time, to fix blood diseases or cancer, you don’t want to be giving the defective blood back.”
Cord blood firms disagree, saying they simply offer parents an extra option for an uncertain future.
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“We think it’s valuable that a family make an informed decision,” said Jim Corbett, president of ViaCord of Cambridge, Mass., one of the nation’s leading private bankers. “I think we are very careful in educating our parents.”
Besides, they add, options for public banking are scarce and even when parents do donate, at least half the contributions are thrown away because they’re too small to meet minimum cell counts. With private banking, parents can pay to save any amount.
At issue is who really should preserve their own child’s cord blood for future medical needs, and who would be better off contributing to the public supply.
Private firms such as ViaCord tell parents the chance of a baby ever needing his own or a sibling’s stem cells, including cord blood, is as low as 1 in 220.
But the math behind that statistic is widely debated, said Dr. Dennis Confer, chief medical officer for the National Marrow Donor Program in Minneapolis, which maintains a public registry of donated cord blood units. The ViaCord number spreads the odds over 70 years instead of the minimum 20 years typically regarded as the standard for public cord blood storage. And it fails to note that most of the transplants would be likely to occur between ages 40 and 70, as the diseases that benefit from them increase.
“The likelihood that it will be used now or in the future is extremely low, probably 1 in 1,000,” said Confer, who adds that that’s probably a generous estimate.
Overall, the chance that a publicly stored unit of cord blood will ever be used is about 650 times higher than the odds that a privately banked unit will ever be needed, Confer added.
Public banking is free to donors. It's available to anyone who needs it for conditions ranging from cancer and leukemia to conditions such as severe aplastic anemia, sickle cell disease and other genetic disorders.
Pediatricians urge public donation
The American Academy of Pediatrics last year urged parents to privately bank their babies’ blood only if they had an older child with cancer or a genetic disease that could benefit from a sibling’s donation. Otherwise, parents should donate to public banks, the panel said.
“There was no scenario under which it justified using the private banks,” McManus said. “It was important to know that we tried to give something back when we could and not let it go to waste.”
For many other willing parents, public donation isn't so easy to come by. Across the country, fewer than 200 hospitals handle public donation, mostly because they’re too far from storage centers or lack equipment and resources.
At the federal level, there’s not enough funding to collect public donations or enough space to store them, said Robert Baitty, director of the National Cord Blood Inventory.
“There are many more women who want to donate than there are resources available,” he said.
On the surface, both private firms and public advocates say that when so much cord blood goes unused, there shouldn’t be a struggle for supply.
In reality, though, “private banking takes a donation away if the people had a public option,” said Fran Verter, a scientist and consumer advocate who started the Parents Guide to Cord Blood Foundation and maintains a detailed Web site of information.
Nationwide, at least 21 states have adopted legislation recommending or requiring doctors and health officials to inform expectant parents about all cord blood collection options.
So far, private banking seems to be winning public sentiment.
Since the early 1990s, parents of an estimated 600,000 U.S. babies have paid hundreds or thousands of dollars apiece to collect and store cord blood in private inventories now maintained by some 30 firms, private bankers said. Costs typically include between $1,500 and $2,000 to collect the blood just after birth and about $125 a year to preserve it in liquid or vapor nitrogen.
In contrast, there are only about 105,000 units of blood stored in some 30 public banks across the country. The National Cord Blood Inventory, a federal program, was charged in 2006 with collecting 150,000 new, ethnically diverse units, but at $1,500 to process each unit, progress is slow, Baitty said.
Collecting blood for public use is more difficult than private banking. The donations must be strictly screened, and they must contain enough cells to make up a usable dose — about 1 billion nucleated cells, according to Triplett, the cord blood transplant specialist who is also an assistant professor of pediatrics at St. Louis University.
It’s impossible to tell before birth how many cells a baby’s cord blood will contain, so too-small samples are frequently tossed, though some are saved for research, he added. Also, parents who donate cord blood should understand that, while it's possible the cells may be available to them for their child's future use, they shouldn't count on it.
Clearly, however, the biggest cause of the disparity between private and public collection is the marketing muscle of the private firms.
Commercials on baby-oriented TV channels, glossy ads in child and parenting magazines, direct-mail contracts with maternity stores, brochures in obstetricians’ offices and eager e-mail sales pitches saturate the market.
“Your baby’s cord blood is a perfect genetic match for your baby and may potentially provide treatment for siblings and other family members as well,” reads one ViaCord brochure.
Some families report surprise at how quickly they're targeted by the private banks.
“They’re trying to put the EPT early pregnancy firms out of business,” Confer noted wryly. “They seem to know even before the kit turns blue.”
On top of that, the private firms unleash a “soft” sales force of parents who’ve already banked their baby’s blood who receive $50 MasterCard gift cards or a year of free storage every time they refer another new family to the bank.
The pitches worked, said Kim Moldofsky, 40, of Chicago, who privately banked her second son’s cord blood with Cryo-Cell International Inc. in 2000. Back then, the collection fee was about $500 and storage costs were about $50 a year, she said.
“I would say I fell for some of the marketing, absolutely,” said Moldofsky, who operates a parenting blog. “I think you’re so much more vulnerable when you’re pregnant. And there was even some guilt that we didn’t do it for the first one.”
Six years later, though, Moldofsky stopped paying the storage fee for the banked blood. “Once your kid is over the age of 5, they seem so much more developed,” she said.
Private banking firms deny that their marketing tactics are over-the-top or that their parents are being manipulated by the material.
“That sells women and expectant parents short in terms of making health decisions for their families,” said David Zitlow, senior vice president of public affairs for Cord Blood Registry of San Bruno, Calif., another of the nation’s largest cord blood firms.
Darla Lindenmayer, 35, of Verona, Va., said she knew exactly what she was doing when she chose to privately bank her son Spencer’s cord blood with ViaCord nearly a dozen years ago. She’s a child-birth educator and her husband is disabled. Even though her family was struggling financially, they made sacrifices to afford the cost of the service, Lindenmayer said.
“We thought, ‘We’re probably never going to use it, but it’s there just in case something happens,’” she recalled.
When Spencer turned 10, he was diagnosed with severe case of type 1 diabetes. Within months, he required two types of insulin and up to six shots a day. While researching the disease, Lindenmayer came across a clinical trial conducted by Dr. Michael Haller at the University of Florida that was testing the use of cord blood in children with juvenile diabetes.
In March 2007, Spencer was transfused with his own cord blood. Today, he’s down to one kind of insulin and one shot a day, his mother said. A thyroid condition cleared up, too, she said.
“Dr. Haller doesn’t want to give false hope, but we see a difference,” Lindenmayer said. “Because we had collected Spencer’s cord blood, we saved his life.”
Parents must inform themselves
Of all the issues in the cord blood discussion, raising public awareness may be the most crucial, said Verter, the consumer advocate.
She believes that there’s a place there’s a place for private and public collection, so long as parents inform themselves about the options.
“The most important thing is that the cells have value and you shouldn’t let them go to waste,” she said.
That’s the conclusion that Kiley and Voshte Gustafson have come to as well. When their baby boy is born on or about Sept. 2, the couple plans to donate his cord blood to Seattle’s Puget Sound Blood Center instead of paying for a private bank.
“I just think it’s too expensive,” said Kiley Gustafson. “If it was cheaper, I might have thought about it.”
In the meantime, he has a simple solution for all those ViaCord brochures piling up on his counter.
“I read the first one or two,” he said. “Now I just recycle them.”
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