Cryo-Cell currently lists both osteopetrosis and Diamand-Blackfan anemia on its website as examples of diseases that have been treated with cord blood. In small print, the company offers a caveat: "autologous (self) stem cells may not be useful in the treatment of certain above diseases."
Dones says today that she still wonders what Cryo-Cell believes it's selling people. "I'm sitting there like, 'Why are you in business? What are you storing cord blood for if people like us can't use it?'
"All this time, I was like, 'This can't be right what they're doing.' I want to know how many times people have called them up and said, 'My child is sick; I need my child's unit,' and how many units were shipped out. I'm going to tell you right now none."
Cryo-Cell disagrees. On its website, the company says that 14 times, it has had "successful cord blood transplants for diseases."
Of those 14 cases, six involved a child using its own blood and the other eight involved siblings or other close relatives. Two cases involved severe cases of diabetes.
But Cryo-Cell's definition of "success" is surprisingly narrow: This means simply that the blood the company stored was thawed effectively and used.
Maass won't give an exact number of patients whose diseases have been cured by Cryo-Cell cord blood. And when asked whether any of the six children using autologous transfusions were cured by the blood transfusions, Maass says no.
"All of them are of course highly experimental and haven't been reduced to clinical participation," he says. "Did we cure diabetes with those two transplants? Not to my knowledge. Our job is to collect blood and make sure that after it's frozen, it's thawed out and administered. The only thing that we put on our website is whether the graft was viable when it was thawed."
In other words, whether they did any good once transplanted isn't Cryo-Cell's business.
On a recent Thursday afternoon, the spacious waiting room of Royal Palm OB/GYN in Coral Springs is packed with young families and expectant mothers. Toddlers doze and heavily pregnant women shift uncomfortably as crisp orderlies call out the names of patients. In the middle of the room, a basket of dog-eared pregnancy magazines is topped with a creamy-white brochure for Cryo-Cell International. On its cover, along with the liquid eyes of newborns, is the company's slogan: "Imagine. Believe. Expect. Miracles of Umbilical Cord Blood."
Plastic sleeves stuffed with Cryo-Cell brochures adorn other surfaces, including front and center at the checkout desk. It's clear that Royal Palm OB/GYN has followed Cryo-Cell's suggestion to "brand" itself a Cryo-Cell practice.
When Zafran appears, he is short, sprightly, and almost elfin, with boyish cheeks and a winning smile. He whisks into a quiet corner office, sits, and begins listing the virtues of cord blood.
"Leukemia, lymphoma, sickle cell anemia has been cured," he says. "The scientific community believes that there is significant value in umbilical cord blood for stem cells.
"The debate is who is going to store it and how you're going to store it. Is the government going to pay for this? There aren't many public banks. Right now, if you have a child and you want to donate to a public bank, there are very few."
Zafran explains that he's been involved with Cryo-Cell on a "consultant basis" for six to seven years. He came to believe in the promise of cord blood in the late 1990s, soon after his father's death from acute leukemia, when stem cell therapies were on his mind. After writing to Cryo-Cell's then-CEO, Daniel Richard, and visiting the company's facility, Cryo-Cell proposed a partnership Zafran would become a medical adviser. Zafran agreed. Since then, 300 to 400 families from Zafran's practice have stored cord blood at Cryo-Cell.
"I go each year to the American College of Obstetricians and Gynecologists' national meeting, partially for myself and partially as a spokesperson for the company," he says.
When asked if spokesperson is his official title at Cryo-Cell, Zafran looks pained.
"Well, I hate to call it that," he says. "I would say just a consultant."
Both he and Cryo-Cell didn't answer specific questions about compensation for his services. "I do get compensated... like a consultant fee," Zafran says. "I would say it's sort of a usual and customary kind of thing."
"That's company business," says Gerald Maass, the Cryo-Cell VP. "It's a traditional doctor consulting fee."
Though laws and ethics rules prohibit doctors from benefiting financially from the sale of a particular drug or procedure, companies routinely get around such strictures by giving gifts to doctor's offices, paying doctors handsome fees for attending "educational" seminars in exotic locales, and, as the New York Times has recently reported, buying just about every MD in the country a free lunch.