When Lisa Recker was pregnant, she was inundated with ads touting a once-in-a-lifetime opportunity to make the “best investment” in the future health of her child and her family: preserving the blood from her baby’s umbilical cord.
Cord blood, as it is known, contains stem cells that can be used in transplants to cure leukemia and other diseases and may someday treat ailments from diabetes to Alzheimer’s. For as little as $1,100, the ads read, preserved cord blood taken from Recker’s daughter would provide “biological insurance” if the girl or another family member developed one of those diseases.
As a gift, Recker’s parents paid a San Bruno company, Cord Blood Registry, to collect the cord blood of her daughter, Nicola, and preserve it four years ago.
But the ads for a burgeoning industry of private cord blood banks fail to say that doctors rarely transplant a child’s own blood because it can contain the disease. And major medical societies advise against storing a child’s blood for the family’s potential use because it’s not likely that a relative will develop a disease currently treatable by cord blood.
“I don’t feel completely hoodwinked, but more accurate information needs to be out there,” said Recker, an actress who lives in Redwood City.
As cord blood is used increasingly as an alternative to bone marrow, the success of more than 6,000 transplants worldwide since 1998 — only 14 of them using the child’s own blood — has spawned at least 15 private cord blood companies that charge families an initial fee ranging from $1,100 to $1,800, plus about $100 a year, to store a child’s blood.
“Most of the people in the hematology community think they’re a bunch of snake-oil salesmen in these private companies,” said Dr. Bertram Lubin, a blood specialist and president of Children’s Hospital Oakland Research Institute. The hospital has the nation’s only program that exclusively banks newborn cord blood, for free, for a sick sibling.
“I get calls from parents who are distraught because they cannot afford to bank their kid’s cord blood, and they feel like they’re failing as parents before their child is even born,” Lubin said. “I tell them there’s no data to support that. You’re being misled.”
The private firms argue that they provide a service that already can treat numerous diseases and holds promise for illnesses from Parkinson’s to heart disease as research advances.
“There are well over 70 diseases that have been successfully treated using umbilical cord blood stem cells, and there are many diseases — from Parkinson’s to stroke to heart disease to spinal-cord injuries and Alzheimer’s — in promising stages of research and development right now,” said Mercedes Walton, interim CEO of Cryo-Cell International in Oldsmar, Fla. Her firm is one of the three largest cord blood companies, along with Cord Blood Registry and Viacord in Cambridge, Mass.
Doctors such as Lubin do advise parents to save cord blood if they already have a sick child who can be cured by a blood stem cell transplant. They also recommend donating cord blood to public banks for anyone’s use, although the opportunity is limited in the Bay Area. In April, a national panel of scientists recommended at least tripling the 50,000 cord-blood units now available through public banks, saying it would enable nearly 90 percent of the 11,700 Americans needing transplants each year to find cord blood or bone marrow matches.
Benefits of cord blood
Like bone marrow, cord blood contains hematopoietic stem cells that mature into blood cells. They differ from the more controversial stem cells, which are taken from human embryos and can develop into any type of cell in the body. However, new research suggests that cord blood cells may also differentiate into some tissue cells.
Typically, when cord blood is banked, 3 to 4 ounces of blood from the placenta is drawn from the umbilical cord immediately after a baby is born, posing no risk to the child or mother. The blood is deposited in a bag or vial and shipped to a storage facility for freezing.
Cord blood transplants can be used to treat bone marrow failure, blood diseases such as sickle cell anemia and thalassemia, cancers including leukemia and lymphoma, immune deficiencies, and metabolic diseases. In a transplant, the cord blood is injected into the recipient’s vein, similar to a blood transfusion, with the hope it will grow into healthy new bone marrow.
Just as babies have less-developed immune systems, their cord blood is considered “immunologically immature,” so its cells are less likely to attack a transplant recipient’s normal tissues — a painful and potential deadly transplant complication known as graft-versus-host disease.
That means graft-versus-host is less severe in cord blood transplants, and the tissues of donors and recipients don’t have to be as closely matched as they would for bone marrow transplants. That’s particularly significant for minorities, who often have trouble finding bone marrow matches because they have less common tissue types and fewer potential donors.
Most cord blood transplants in the United States are performed on children because samples may not contain enough cells to treat adults, but research is showing promising results for adults, too.
Private cord blood companies say there are three reasons to save a baby’s cord blood: for the child, for family members and for presently undeveloped uses. They sell parents on the fact that their baby’s cord blood will be a “perfect match” for the child.
Marketing omissions
But what generally isn’t clear from the private banks’ ubiquitous marketing materials to pregnant women — in magazines, maternity stores, doctors’ offices, direct mail and on the Internet — is that genetic diseases, such as sickle cell anemia, can’t be treated with a child’s own cord blood because it already contains the disease.
Many transplant doctors also are hesitant to use a child’s own cord blood for nongenetic diseases, such as cancer.
“In children with cancer, I would definitely not use” a child’s own cord blood because it was probably contaminated with the disease at birth, said Dr. Joanne Kurtzberg, director of the pediatric blood and marrow transplant program at Duke University Medical Center.
But David Harris, Cord Blood Registry’s scientific director and a professor of immunology at the University of Arizona, noted that patients currently are treated with transplants of their own cells, extracted during remission, for maladies such as Hodgkin’s disease. He also cited evidence that there is not a genetic predisposition to cancer in children who get sick after age 2.
Kurtzberg disagreed. She noted one case in which a child, whose cord blood was banked at birth, developed leukemia at age 11. The cord blood contained the disease.
Of the estimated 6,000 cord blood transplants worldwide, only 14 have been done using a child’s own cord blood. Half of those used samples stored by the three biggest cord blood companies, including four transplants for aplastic anemia, a disease in which the bone marrow stops making enough cells, and two experimental brain injury transplants done by Kurtzberg.
“It is very accurate that the majority of the uses for umbilical cord blood stem cells would not be used (to treat a child with his own blood), but for a related sibling,” said Marc Beer, president and CEO of ViaCell, Viacord’s parent company.
Industry officials say that siblings have a better chance of being able to donate cord blood over bone marrow — because a perfect match is not needed — and that the survival rates are significantly higher in related transplants.
But without a perfectly matched sibling — whose bone marrow could be used instead of cord blood — some transplant doctors say an unrelated donor from a public bank could be a better choice. Kurtzberg has done nearly all of her 600-plus cord blood transplants — the most in the world — with unrelated donors.
The American Academy of Pediatrics and the American College of Obstetricians and Gynecologists, both of which recommend against private cord blood banking, put the odds of a child needing a blood stem cell transplant at between 1 in 1,000 and 1 in 200,000.
Industry estimates range from Viacord’s 1 in 27 to Cord Blood Registry’s 1 in 1,000 to 2,000.
That is without considering the potential future uses to cure such common ailments as heart failure, stroke, Alzheimer’s and diabetes through gene therapy.
Already, Kurtzberg’s research at Duke has found that the immature blood cells have the ability to develop into brain and heart muscle cells. Research done by ViaCell also shows that the cells can develop into heart, neurological and liver cells. Clinical trials are being done using the cells for heart repair.
“The potential for use is very small right now but could be very great in the future,” said Dr. Michael Trigg, who chairs Cryo-Cell’s medical and scientific advisory board and is chief of the division of blood and bone marrow transplantation at the Alfred I. duPont Hospital for Children in Wilmington, Del. “It’s expensive, and you will have to pay for it every year. But you just have no idea what life holds for you or the curative potential of those blood cells sitting in storage.”
Kurtzberg said it’s not yet clear whether it would be beneficial to have one’s own cells for tissue repair and Regeneration.
“That’s a 50-to-60-years-down-the-line question. But in 50 to 60 years, we’ll have other ways to isolate these cells, and you wouldn’t have to have saved cord blood,” she said.
Others, such as Cord Blood Registry’s Harris, believe that such treatments may come within a decade, and that having one’s own cells will be critical. Despite the rapidly developing science, medical societies and other experts remain skeptical.
Personal use ‘impractical’
An April report by the Institute of Medicine of the National Academies, an independent agency that advises Congress on scientific matters, said saving cord blood for a person’s own use is “impractical” on a large scale “because of the limitations to its use and infrequency of the conditions that can be treated.”
The American Academy of Pediatrics, in its most recent statement to doctors in 1999, says “private storage of cord blood as ‘biological insurance’ is unwise” unless a family member might need a blood stem cell transplant.
The American College of Obstetricians and Gynecologists, whose members are a key target audience for cord blood companies’ marketing, advises its doctors to proceed with “considerable circumspection.”
Industry representatives said they think the statements are outdated and should be changed. But Lubin, who with Kurtzberg is updating the American Academy of Pediatrics statement, said it’s unlikely the new version will be more favorable toward private banking.
The American Academy of Pediatrics encourages parents to donate cord blood to one of the country’s 20 public banks, where any ill person could seek a donor and the sample is not reserved for the family. The National Marrow Donor Program includes more than 40,000 cord blood donors on its registry.
The Institute of Medicine in April outlined recommendations for the creation of a coordinated and standardized national public cord blood system, for which Congress has earmarked $10 million. The goal of the National Cord Blood Stem Cell Act, approved last year, is to collect 150,000 cord blood units over five years to increase the chance that people needing a transplant will be able to find a match.
While there is not a public bank in the Bay Area, Lubin hopes to apply for federal funds to start one. For now, mothers giving birth at Alta Bates Summit Medical Center in Berkeley may be able to donate their baby’s cord blood through a new pilot program with Children’s Hospital Oakland.
Business is booming
Admonitions against private cord blood banking don’t appear to have hurt the industry. Since Cryo-Cell began storing cord blood in 1992, more than a dozen other companies have entered the field. “In the last 24 months, we think the industry has doubled,” said Beer of Viacord.
But industry leaders believe the field may be winnowed by new Food and Drug Administration guidelines that took effect May 25, subjecting the firms to FDA inspection.
Cord Blood Registry, which started with 1,200 clients in 1995, now claims 90,000 customers and hopes to add 50,000 this year alone, said Stephen Grant, vice president of corporate communications. It has provided cord blood for 37 transplants, nearly all of them for siblings. About half have been part of a program in which families with a sick child can bank newborn cord blood for free, similar to the Children’s Hospital Oakland program.
Cryo-Cell has stored cord blood for nearly 80,000 customers and released seven samples for transplant. Viacord has more than 70,000 clients. It has had 16 transplants, 13 done on children who were already ill when their siblings’ cord blood was banked.
But the number of cord blood samples privately banked remains a tiny fraction compared with the 4 million births a year nationwide. Most cord blood is discarded.
“The whole proposition for new parents to consider is that this is a once-in-a-lifetime opportunity to preserve their child’s cord blood for all sorts of possibilities that may occur, health conditions they may develop over time, and for diseases that potentially could be cured or treated,” said Cryo-Cell’s Walton.
Recker said the possible future uses make her believe that her decision to bank her daughter’s cord blood with Cord Blood Registry may be a good investment even though she didn’t understand the current limitations. She paid an up-front fee of more than $2,600 to store the cord blood for 18 years.
Yvette Rosedale of San Francisco also was surprised to learn that transplant doctors say they’re unlikely to use a child’s own cord blood. But she said she is glad she stored cord blood with Cord Blood Registry for her three children — August, 5; Cecilia, 2; and Orion, 9 months.
“We don’t have any blood disorders in our family, but it wasn’t going to put a strain on us financially,” said Rosedale, whose husband is CEO of a software firm. “We had the luxury of saying, ‘Why not have the insurance?’ ”
But she said the marketing plays on parents’ fears.
“When it’s your first child, you want to give them everything,” Rosedale said. “I certainly don’t regret my decision. I would just encourage people to think about what works for their families and not let fear take over.”
Janine DeFao
