When Medicine Meets Marketing

A number of trends have likely contributed to CBR's growth, including the enormous boom in the baby-products market and the hype around stem cells in general. But one thing that has not been a factor is a rapid rise in medical uses for cord blood—because there hasn't been one yet. Just as it was in the '90s, a cord-blood stem-cell transplant is still an experimental procedure. This hasn't deterred CBR from publicizing the results of a few positive studies, including a small, preliminary trial in kids with type 1 diabetes from last year.

In Dallas Hextell, CBR has another case to promote. In ads, the Hextells call the cord-blood treatment "a miracle." But nobody really knows what has happened in Dallas's brain. The story sounds less clear-cut coming from Kurtzberg, the doctor who performed the transfusion and who examined Dallas again in November. "He has made progress, there's no question," she says. "But he still has a global developmental delay of about a year. He looks like where we would have expected him to be without cells." When she saw him at his follow-up visit, she adds, "I thought, wow, he doesn't look as good as I was expecting based on what's been in the press." (The Hextells find Kurtzberg's assessment frustrating and note that Dallas's therapists at home—who knew him before the transfusion—are impressed and surprised at his improvement.) Kurtzberg also has not completed the follow-up and analysis of the study or published the results from 50 other kids with cerebral palsy who have enrolled in her trial thus far.

Kurtzberg, it turns out, is not a big booster for private cord-blood banks; although she uses samples from CBR, she does not receive funding from the company, and also uses cells from public banks and other companies. In fact, she's one of the authors of a statement the American Academy of Pediatrics put out last year discouraging parents from using private banks on the grounds that the science isn't solid enough yet to justify a multi-thousand-dollar gamble. (The AAP does support public, nonprofit banks, which patients can use for free.) The American College of Obstetricians and Gynecologists released its own statement in February, noting that "there is no reliable estimate of a child's likelihood of actually using his or her own saved cord blood later." Then it made a guess anyway: 1 in 2,700, which Kurtzberg calls "generous."

Why is this number so small? There are reasons to think cord-blood treatment will never be a widespread medical procedure. The blood contains only enough stem cells to treat a small child; unlike embryonic stem cells, cord-blood cells cannot be multiplied into self-rejuvenating "lines" in a petri dish. The cells are limited in other ways, too. There's little point in treating a genetic condition with a patient's own cord-blood cells, which have the same DNA and thus the same deleterious mutations. Scientists could someday overcome these hurdles; they could develop new ways of cultivating and genetically tweaking cord-blood cells in the lab. But by then, the same scientists will probably know much more about all stem cells, especially once restrictions on embryonic research are lifted—and there may be better ways of getting safe, usable cells from other sources, ways that won't require a lot of technological wizardry.

These difficulties don't deter everyone, of course. The pediatrician Robert Sears, a talk-show regular and the coauthor of popular parenting books, supports private cord-blood banking; he froze his own kids' samples with CBR. It's also possible that 1 in 2,700 is too conservative. CBR's executives toss around much more dramatic odds. Harris, the scientific director, puts them at a breathtaking 1 in 3. His calculations, unlike the professional groups', include injuries to the brain. There is, he notes, "no genetic predisposition to falling out of a crib"—so as he sees it, every child, technically, is at risk.

Until widespread trials of cord-blood treatment take place, both sides will be able to use arbitrary calculations. Those trials, alas, are probably far off: rare conditions are difficult to study on a large scale, since by definition there aren't many patients to enroll. Three years ago, Congress tried to put cord-blood trials on a faster track by expanding funds for the NIH's public banks—more donations to the banks could mean more studies—but the law hasn't made much of an impact. Public banks have collected cord blood from just 105,000 babies, and fewer than 200 hospitals in the U.S. are able to draw and ship the blood to public centers. The private banks, of course, have larger stores. But they are not huge contributors to research either: only 100 of CBR's 250,000 clients have enrolled in trials thus far.

For now, parents are left to make the same speculative wager at the heart of CBR's business model: how much should you invest in science that's promising but not proven? Back in the ballroom in Tucson, the OBs and midwives on the CBR junket were considering that question too. They pressed Cynthia Hextell for more details. How were the other kids in the Kurtzberg trial doing? Cynthia said the few other families she had talked to had seen improvements like Dallas's. And what risks were they warned about? "The only risk was that it wouldn't work and we would be out the money," she said. "But we just knew in our hearts that it was going to work." Other parents will have to decide whether they have that kind of faith.

© 2008