Do the promises of private cord blood banks live up to reality for parents-to-be? According to the parents I see in practice, it’s hard to ignore the ads for cord blood banks, offering a lifetime of protection for their children. And, if you’re an expectant mom, there’s information coming at you constantly from your doctor’s office, magazines, online, and perhaps even your yoga class.
Here’s an excellent report from ABC News to help you sort out the fluff from the facts:
Expectant mom Ursula Lyon, saw an ad during a yoga class.
“I’m really early in my pregnancy so I am just getting to the stage where I’m exploring and trying to understand the things I need to prepare for,” said Lyon.
Some parents-to-be are sold on the advertising that banking their child’s cord blood could potentially treat an array of diseases the child, or his siblings, could encounter in their lives. Other parents-to-be may find all the promises too good to be true.
“I certainly should know more about it, I imagine because it is everywhere,” said Kristina Ashley. “It just sounded a little science-fictiony or something to me.”
Cord blood, which is harvested from the umbilical cord right after a baby is born, is marketed as a treatment for diseases such as leukemia and sickle cell disease, and as a potential source of cells for regenerative medicine a cutting-edge field of medicine studying how to repair tissues damaged by everything from heart disease to cerebral palsy.
Cord blood can be banked two ways:
- in public banks for use by anyone in need whose cell type is a match, and
- in private banks where it is only available to the family of the child who donated.
There is little doubt that scientists believe umbilical cord blood stem cells hold promise for the future.
Cord blood stem cells are already used to treat blood disorders such as aplastic anemia, and research is underway to determine if they can treat other more common conditions like type 1 diabetes.
But many experts question whether many companies’s marketing materials confuse or even mislead parents about the usefulness of private banking.
Private cord blood banking costs $2,000 to $3,000 for the initial fee, and around another $100 per year for storage. While that may seem like a hefty price tag, many expectant parents may see it as an investment in their child’s long-term health.
Tracey Dones of Hicksville, N.Y., paid to bank her son Anthony’s cord blood. But four months after he was born, Anthony was diagnosed with osteopetrosis, a rare disease that causes the body to produce excess bone, leads to blindness, and can be fatal if left untreated.
Tracey said she felt lucky since she banked Anthony’s cord blood with a private company. And osteopetrosis is one of 80 diseases listed by many cord blood companies in their marketing material as treatable with stem cells.
“When they mentioned the stem cells, I said, ‘Oh, I banked his cord blood, we could use that,'” said Dones. “And immediately they said ‘absolutely not.'”
Osteopetrosis is a genetic disease, so this means that doctors could use a sibling’s cord blood cells to treat Anthony, but they cannot use his own cells because the disease is in every cell in his body.
In fact, a majority of the diseases listed in private banking firms’ marketing material as treatable with stem cells are genetic diseases.
Marketing materials by Viacord and Cord Blood Registry, the two largest companies, do not mention that cord blood stem cells cannot be used by the child for genetic diseases, although the fine print does state that cord blood may not be effective for all of the listed conditions.
“It was the life preserver that didn’t float,” said Dones.
Some brochures advertising private cord blood banking show children with cerebral palsy, a neurological disorder, who were treated with their own stem cells.
In the case of Cord Blood Registry, the company lists all stem cell transplants conducted at Duke University. In a list of individuals treated in their “stem cell therapy data” cerebral palsy is listed.
However, transplants were part of an early research study and studies of efficacy are just now underway.
“We don’t have any data yet about whether it works or not. Sometimes they improve on their own,” Kurtzberg told ABC News.
Tom Moore, CEO of Cord Blood Registry, the largest private cord blood banking firm, told ABC News conceded that there was no proof that the transplants worked, but added that there is strong anecdotal evidence.
“I think proof is a strong word right now,” said Moore. “I think there are a number of situations but they are anecdotal.”
Anthony’s doctors found a match for him through the New York Blood Center’s National Cord Blood Program, a public cord blood bank.
Unlike private banks, public banks do not charge to collect cord blood, they charge a patients insurance company when cells are used. And once it is entered in the public system, the blood is available to anyone who needs it.
Although blind, today Anthony is a healthy 7-year-old after being treated with donated cord blood stem cells. Dones said she now believes private banking was a waste of her money.
“There are so many people out there who don’t really understand and they are so misled by the advertisements out there it still makes me angry,” said Dones.