Cord blood choice: Private fears vs. public good

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.

High-pressure tactics
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.

Courtesy of Darla Lindenmayer Darla Lindenmayer credits cord-blood banking for saving her son Spencer's life.

Private banking: 'We saved his life'
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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