Like many parents today, Amy and Paul Murphy were overwhelmed by the myriad decisions they had to make about the birth of their first child. But the decision to bank their newborn baby’s umbilical cord blood came relatively easy. Because Amy has a family history of leukemia, and stem cells from cord blood have been shown to be useful in the treatment of blood cancers, they didn’t debate the issue for long—when their daughter Katie was born, they chose to privately bank her cord blood.
By the time Katie was nine months old, the Murphy’s realized she wasn't sitting up or moving around as much as other kids her age. When she turned 1, her parents discovered she had hypotonia, low muscle tone that adversely affects gross and fine motor skills. After doing some research, they found a Duke University study that was using stem cells from umbilical cord blood to treat kids with cerebral palsy. Their decision to privately bank the blood meant they could potentially participate in the study. After Katie was accepted, she received a cord blood transfusion in January 2010.
Despite a dearth of clinical evidence, Amy was soon convinced that the transfusion had made a crucial difference in her development. “I was told not to expect something right away, but I thought within the first few months, I was seeing little things,” she remembers. “I’m her mom -- I’m with her all the time and I see her all the time…her progress has been so much faster, it’s incredible.”
Banking on the future
That's precisely the message cord blood banks hope people take away from the pamphlets and advertisements that line the pages of parenting magazines and the walls of many doctor's offices. Those advertisements are part of the growing trend of private medical businesses targeting patients with hopes that new—and as yet largely unproven—medical advances might help them if they're willing to pay the price.
While the Murphys consider Katie’s ongoing progress to be a success story, even some medical researchers working toward those very advances warn against setting up false expectations.
“I worry private banks misrepresent possibilities,” said Dr. Joanne Kurtzberg, program director of pediatric blood and marrow transplantation at Duke University and the lead researcher on the clinical trial in which Katie took part. “Using a child’s own cord blood is totally experimental,” Kurtzberg said. “I believe a parent has the right [to privately bank], but they need to understand what it can or cannot be used for at this point.”
Besides their use in treating blood diseases, cord blood stem cells are considered “master” stem cells and may also be used in regenerative medicine eventually—but that, too, is unproven as of now.
“All those promises that [cord blood] can correct damaged organs and degenerative diseases are just speculation,” Kurtzberg said.
Dr. Irving Weissman, director of the Institute of Stem Cell Biology and Regenerative Medicine at Stanford University, holds strong beliefs that stem cell transplants will be used to treat more diseases in the future, but he does not advise parents to privately bank because there’s no guarantee when, if ever, that future will come.
“It’s a business that has very little positive outcome for the people who do it,” Weissman said. “And to the extent that they claim cord blood can regenerate anything but blood, they’re wrong. It’s a practice of pressuring young people to pay a significant amount of money for private use...I think it’s not evidence-based.”
Banking cord blood does come at a hefty price. Processing fees cost around $2,000, and there is an annual storage fee of about $125.
For some, however, the few advances being made already are proof enough that it’s worth the price.
Heather Brown, the Vice President of scientific and medical affairs for Cord Blood Registry—one of the largest private cord blood banks in the country—is excited for the potential for these cells to be used in regenerative medicine, and especially for neurological applications like brain injuries.
“Things I didn’t think possible when I joined CBR are now in clinical research and human treatments,” Brown said. “Ultimately, it’s better to have and never need, than not have it at all and need it.”
As with all major medical decisions, it’s wise for parents to do their own independent research. If you trust the literature from the private cord blood banks like Cord Blood Registry and Viacord, for example, both state the chances of needing a stem cell transplant as about 1 in 217. Further research with other organizations shows that number to be closer to 1 in 2,000.
Dr. John Liu, president of the American Academy of Pediatric Dentistry, is also confronting a growing stem cell business, as tooth banks like StemSave promise to bank dental stem cells for use in future regenerative medicine treatments.
“Stem cell research is not at the point where we can take an individual’s stem cells and do a lot of things with it yet,” Liu warns. “If [parents] want to store the stem cells they need to be clearly informed and understand where things are.”
Others, like Dr. Jeremy Mao—director of Columbia University’s Tissue Engineering and Regenerative Medicine Laboratory and the Chief Science Advisor for StemSave—believe dental stem cells may one day help with such advancements as restoring muscle function.
Unlike umbilical cord blood, dental stem cells have no current clinical applications and are not being used in any human trials. Even so, these companies charge between $600 to $800 to process the cells, and up to $130 in annual storage fees.
And while tooth banks are not yet as prominent as cord blood banks, they are growing quickly enough that the American Academy of Pediatric Dentistry released a statement advising parents on the issue. They are not the first organization to step in. The American Academy of Pediatrics released a statement on cord blood banking discouraging their patients from private banking unless there is a family history of a proven disease the cells can treat.
Dr. Mitchell Cairo, chief of pediatric hematology, oncology and stem cell transplantation at the Maria Fareri Children’s Hospital at Westchester Medical Center, is part of the committee that wrote the original AAP statement and revises it periodically. He remains ambivalent at best.
“It’s a free market, and one can’t predict the future,” Cairo said. “One makes all kinds of decisions and investments in their life.”
Cairo points out that the growth of these businesses is not unique to stem cells. One just has to look around a doctor's office to see a number of businesses promising treatments and storage for something that might benefit the patient in the future. He believes the choice to buy into any of these businesses is like the choice people make when they buy types of insurance: There may be a low probability, but what if you are that 1 in 2,000?
"Pretty much a miracle"
That low probability is enough for some parents. Tami originally spoke to her doctor about cord blood banking when she was pregnant with her son Blase in 2002. Her doctor convinced her not to bank. But Byrd started speaking to Viacord when Blase was diagnosed with acute lymphoblastic leukemia. At the time, she was five months pregnant with her third son, Bryce. She learned if the baby was a match for Blase’s stem cells they could be used to treat his leukemia.
“The whole thing was pretty much a miracle,” Tami said.
When Bryce was born, Tami used Viacord’s Sibling Cord Blood Connection to store his stem cells for free. Viacord offers to collect and store cord blood at no cost to the family for five years if the family is expecting a child and already has a child with “an established diagnosis of a disease that is currently treatable with sibling cord blood.” After being treated with his brother’s cord blood, Blase has been cancer-free for four years. In hindsight, Byrd characterizes cord blood banking as “a necessity, not an option.”
Public vs. Private
The National Marrow Donor Program also has a Related Donor Cord Blood Program that will store a baby’s cord blood at no cost to treat a sibling with a diagnosed disease. Most people are not as aware of the NMDP as they are of companies like Viacord. They are also less aware that there are public donation options for cord blood that make the cells available to the general public as well as the family that originally donated them as long as they have not been used. Kurtzberg thinks this lack of awareness is because private banks are much more aggressive than public banks when it comes to advertising and legislation. In the United States there are only 20 public cord blood banks compared to 32 private ones. To some, the growth of private banks offers more security to parents than those offered by public.
“Our cash flow is such that if [we] stopped taking new clients we would be able to store and preserve cells that we have in our facility for their lifetime,” said Kathy Engle, director of corporate communications for the Cord Blood Registry. The estimated lifetime of stored stem cells is 20 years. Anything beyond that is a guess considering the field has only been around for that long.
Over those 20 years, the business surrounding stem cells has improved somewhat. According to Dr. John Wagner, director of hematology/oncology/blood and marrow transplantation division at the University of Minnesota, advertisements are not as misleading as they used to be. When these businesses first began, Wagner says their marketing clearly made claims that were untrue and exaggerated, specifically targeting women in their last trimester. Wagner believes the marketing efforts have become more accurate over time, and even his views on the issue have changed.
“If asked 10 years ago, I would have said, ‘Run as fast as you can—don’t go anywhere near it,’” Wagner said. “If asked today, I might be changing my mind. It gives me more hope that this will be something that will be useful.”
While this isn’t based on any solid proof, Wagner is encouraged by the research. It’s this research that parents must weigh against the promises made by private stem cell banks, and treat them as they would any other investments: weighing the options first, and weeding out those that are only in the business of selling hope.