Rosemarie Groner, 33, was approached by representatives of an umbilical cord blood bank in 2012 during a prenatal visit with her doctor before the birth of her first child.
The blood from a newborn’s umbilical cord is rich in blood-producing stem cells that could be used to treat some cancers and rare diseases her child might develop.
Private cord blood banks store the blood for a fee, pitching their services to parents as a kind of insurance policy for their children’s health.
Parents pay about $1,500 to store the blood at any of at least 30 private family cord blood banks in the United States. They then pay as much as $175 a year for up to 20 years to store the blood on the off chance their child will someday need it.
“It seemed weird to me because it seemed like a commercial service. It didn’t seem health-related,” Groner said.
While stored cord blood can be used as a medical treatment, the chance that any one unit will be used this way now stands at less than half of 1 percent. Even so, the two largest banks, ViaCord and Cord Blood Registry (CBR), together say they have almost a million units of cord blood in their freezers.
For Groner, a personal finance blogger, the numbers just didn’t add up.
She and her husband opted to publically donate their two children’s cord blood. In a public registry, cord blood units that contain enough cells to be medically useful are stored like regular donated blood.
The blood is made available anonymously to patients who need it and are a biological “match,” meaning that their bodies will likely accept the donation. Units that don’t have enough cells — which, as it turned out, Groner’s didn’t — often go to medical or scientific research.
Many parents go through their children’s birth without ever learning they can donate their babies’ cord blood. But most are approached about private storage, or at least handed a pamphlet by their doctors.
And even when they are told about public donation, the law requires they also hear that private storage is an option.
What to do with cord blood has joined the short list of important questions parents have to answer in the emotionally fraught lead-up to a child’s birth. Parents see it as a difficult decision, but doctors say that storing cord blood is only rarely even worth considering.
What Is Cord Blood Good For?
As the science of stem cells took off in the 1990s, doctors discovered that the stem cells found in the blood inside an umbilical cord could offer a much safer alternative to bone marrow transplants to treat conditions such as leukemia, lymphoma, and sickle cell anemia.
At about this time, both the public cord blood donation program and the private cord blood storage industry emerged.
Cord blood has genuine medical uses. But the question is whether a patient requires his or her own, or a sibling’s, or whether cord blood can be as successfully transplanted from a public bank as regular blood is.
The advantage of using a patient’s own cells to provide a fresh supply of blood precursor cells is that there’s no risk the patient’s body will reject them.
A patient’s own cord blood cells are also used to treat a few conditions, including retinal and brain cancers, which donated cells are not. But in these cases, the stem cells are something of a Hail Mary pass. They can’t hurt, and they might help.
However, there are some downsides to using a patient’s own genetic material. A child with a genetic disease can’t turn to their own stored stem cells for a cure because those cells also carry the disease.
Pediatric leukemia is the most common condition treated with cord blood from donation registries, according to Dr. Pablo Rubinstein, director of the National Cord Blood Program at the New York Blood Center. But youngsters can’t be treated with their own stored cord blood because, research suggests, precursors of the cancer are usually present.
Parents with a child who has these conditions can, however, set aside their next child’s blood in hopes of using it to treat the older, sick child. A sibling’s cord blood has a 25 percent chance of being a perfect match.
Medical groups and public cord blood banks agree it’s a perfectly reasonable choice for parents in these situations to store cord blood privately.
Even so, 96 percent of all patients who need a cord blood transplant find a sufficient match in the public banks, according to Mary Halet, the central region director of Be the Match, the national bone marrow and cord blood registry. The registry manages the supply of donated cord blood.
It’s much easier to find a stem cell match than a bone marrow match.
Rubinstein estimates the private CBR has used just 200 of its 500,000 units, and most for experimental treatments. The National Cord Blood Program has provided more than 5,300 transplants with a supply of just 60,000 units.
‘Not Something We Were Prepared to Regret’
For doctors, the numbers paint a clear picture: Unless parents already have a sick child who could benefit from a stem cell transplant, they shouldn’t store cord blood privately.
“When I see patients, I advise them against it,” said Dr. Jeffrey Ecker, a high-risk obstetrician at Massachusetts General Hospital and chair of the committee on obstetric practices at ACOG. “It’s unlikely to be used, and it costs money. That balance seems to argue against it to me.”
But expectant parents can have a hard time making dispassionate decisions about their soon-to-be-born children.
“It’s really easy to fall into the scare tactics. When you have your first baby, you’re absolutely terrified to do everything right,” said Groner.
Emily Francis, a 40-year-old mother of two in Alpharetta, Georgia, decided to store her daughters’ cord blood.
“We knew it was very costly upfront but something that, should we ever need it, it was not something we were prepared to regret,” she said.
In his professional capacity, Rubinstein doesn’t see much benefit in storing cord blood. But as a father, he can easily see how parents would spend any amount of money on a tiny chance of saving a sick child.
“I have two children. They’re now grown up, but I remember at the time they were expected I would have done anything, if I could provide a 1 in 10,000 or 1 in a million chance, so I could protect them. And to some extent the private banks tap into that feeling,” Rubinstein said.
But what critics see as pressure, cord blood proponents depict as optimism about future uses of stem cells.
“Our clients bank because they understand that stem cell therapy will play an important role in healthcare during their children’s lifetimes, not because someone was playing on their fears. They bank because they have the information and are optimistic about the future of science,” said Jen Bruursema, the senior director of global healthcare communications for CBR.
Cord blood banking is perhaps best described as a luxury healthcare treatment. But, critics say, it’s not necessarily helpful to those who pay for it.
“It is a good example of the multi-tiered health system that we have. The wealthy can afford an incredible level of high-tech health while the poor cannot afford healthcare at all. I must admit, though, that much of the healthcare that is marketed does not have much of a return on investment and in some cases harms the wealthy more than helps them,” said Dr. John Santa, medical director at Consumer Reports Health.
Parents who pay to store cord blood may think they're getting more for their money than they really are.
“There’s an intrinsic sleight of hand. The family believes that having stored the blood privately they are covered. Some of the banks have described having donated cord blood as insurance, but in fact it is not. It’s not necessary and it may not be usable at all and the families do not know which is the case for them. They’re told something that may or may not be correct, or accurate,” Rubinstein said.
It’s hard to control what people pay for from their own pockets, even if they do so under emotional duress. But what if we let healthcare providers decide when stem cell storage makes sense and covered it with insurance?
Ecker, of ACOG, believes we should.
“If it is proven to be useful, then it should be part of standard medical care and available to patients regardless of whether or not they have the means to afford private banking,” he said. If treatments work, “we would want to make that available regardless of the ability to pay.”
There’s Enough Cord Blood to Share
Doctors and donation advocates acknowledge private cord blood banking with something closer to a beleaguered sigh than an angry one.
That’s because there’s enough cord blood to go around. Parents who decide to store cord blood privately aren’t depriving the public donation system of resources.
“There’s four million babies born every year. This country couldn’t handle it if everybody donated their cord blood. That’s far more than any transplant center would ever need,” Halet said. “It’s a matter of a patient determining what’s good for them and their family.”
Be the Match works with some private banks and with the Parent’s Guide to Cord Blood Foundation to ensure that parents get quality information.
The Parent’s Guide to Cord Blood, while bullish on the benefits of private storage, provides parents with a lot of information about costs and medical uses.
“Be the Match, the accrediting agencies, they all support us because they want to see a good source of education for parents,” said founder Frances Verter, Ph.D., a former astrophysicist who left a career in research to create the foundation after her daughter, Shai, died in 1998 of relapsed leukemia after initially waiting several months for a bone marrow transplant.
The Parent’s Guide to Cord Blood also gets funding from some cord blood storage companies. But to some degree it addresses a fundamental imbalance in what parents hear about cord blood.
“The private banks have an ad budget. The public banks not only don’t have an ad budget, they can barely afford to process the donations that they are getting,” Verter said.
Banking a Harder Choice for Non-White Parents
With limited resources, public banks focus on getting cord blood donations from Asian, Hispanic and, especially, African American parents.
These ethnic groups have a wider range of genetic diversity, which makes it harder for them to find good matches in the public supply of cord blood, according to Halet.
Most of the outreach to encourage parents to donate focuses on non-white parents, targeting large urban hospitals where minority parents are likelier to give birth.
The father of Verter’s daughter Shai was Puerto Rican, which likely contributed to their challenge finding a match. Verter is of European Jewish ancestry.
The irony is that the same parents whose cord blood the public banks seeks out to treat others in the same ethnic group are those who have the least chance of finding a good match from an unknown public donor in the short term.
All groups are reflected in the 96 percent rate of an adequate match. It’s just that some matches are closer than others.
Still, non-white parents face a higher-stakes decision. How does Verter guide them through their cord blood decisions?
“I definitely steer clear of telling people what to do,” she said.
“Fortunately, I’m mainly on the end of trying to raise awareness. I want them to do either,” she said of public donation and private banking.
Verter added that the man who eventually supplied the stem cells to treat her daughter was a white British man from Liverpool.
“I tell our story as an example that everyone should register because you never know who will ‘Be The Match’ to save a life,” she said.
The science of stem cells continues to develop, and private cord blood banks use that as a selling point.
Banks sometimes tell parents whose cord blood donations don’t have enough cells to be medically useful that in the future, there may be technology to produce more cells with the same genes so it makes sense to continue to pay for storage.
“Obviously the mothers will tend to say if there’s any chance they can be used, we want to save them,” Rubinstein said.
The implication is clear. Right now, there’s only a half a percent chance that a child will need their cord blood for medical treatment. But by the time the child is 10, cord blood could provide cures for many more common illnesses. As CBR’s Bruursema said, parents bank because “they are optimistic about the future of science.”
Some optimism is justified. There are promising studies that suggest the stem cells from a child’s umbilical cord might successfully treat diabetes and the neurological disease cerebral palsy.
But research starts with the patient’s own cells for regulatory reasons, not necessarily because a perfect genetic match is a necessary part of the treatment.
The Food and Drug Administration requires that doctors treat foreign cells as a drug. The patient’s own cells don’t have to meet that standard, and, in a regulatory coup for family cord blood banks, a sibling’s cells don’t either.
The family cord blood banks would have to become more tightly regulated if people were relying on their services for standard medical care.
As it is now, there are some quality control issues. Some banks provide boxes for parents to ship the cord blood in that aren’t cooled and insulated to preserve biological material.
Rubinstein said some banks wait too long before freezing the cells.
If the treatments work with nonrelative donations, the public cord blood repositories will be ready, Halet said.
“I do believe there would be an opportunity to get ready for it, just because the clinical trials process takes time. We can ramp up fast with four million deliveries a year,” she told Healthline
A marriage of these odd bedfellows may be the best way forward as stem cells become more mainstream.
Halet and Verter agree that both types of banks should ultimately operate under the same regulations so a family could release blood they’d initially reserved.
At present, because private banks aren’t as stringently regulated, their supplies can’t be incorporated into public supplies even if parents choose to stop paying for storage.
As it stands, Halet said, “the reality is you’ve got to make a decision, and you don’t have a lot of time and then you have to commit to that decision.”
CBR touts its work with public banks to increase the number of patients who donate and the number of doctors who can successfully collect cord blood.
“The pursuit of effective clinical applications requires a readily available and abundant supply of stem cells. As an industry, we want educated provider and patient communities so that people can make an informed choice on what to do with their stem cells,” Bruursema said. “The promise of regenerative medicine is moving closer to reality every day.”
Parents who bank their cord blood today make a big bet on their scientific optimism, paying by the month while science marches slowly forward.
“When you have one newborn it might seem like you can swing it financially, but when you have more than one kid or you’ve decided to stay at home and you still have to make those monthly payments, that seems like a financial disaster to me,” Groner said.