Besides choosing a car seat and setting up a college fund, Claire Rhye had one more decision to make before her first child arrived: what to do with her baby’s umbilical cord blood.
Once regarded as medical waste, umbilical cords and placentas are now sought for their potentially life-saving blood cells. Like other stem cells, they can treat some diseases and have the potential to cure many more.
But such advances present challenges for parents in the United States if they want to store the blood in private banks for their own children or donate it to public banks for others.
“It’s been really difficult,” said Rhye, a 29-year-old from Alexandria, Virginia, who is due to give birth this month. “The private banks do a very good job of marketing ... tugging at your heart strings every time.”
Cord blood can treat leukemia and other blood disorders when bone marrow transplants are a poor option, as well as other genetic diseases. Patients receive the cells directly into the blood. Once in the bone marrow, they generate new blood.
“These are close to miraculous,” said Dr. Joseph Antin, who oversees stem cell transplantation and a related donor program at Dana-Farber Cancer Institute in Boston.
But deciding what, if anything, to do with their baby’s cord blood has many new parents wrestling with a complicated issue that many scientists and doctors are still debating.
'Taking advantage'
Alison Plotas of Rockville, Maryland, whose daughter was born last July, opted for a private bank after seeing several brochures. Her doctor encouraged it as long as she could afford it.
“It’s nice insurance to have,” said Plotas, 33, who has a family history of leukemia. “Now hopefully we won’t have to use it.”
More than 25 companies, including ViaCell Inc.’s ViaCord and Celgene Corp.’s LifebankUSA, offer private storage. Privately-held Cord Blood Registry and other smaller outfits also sell the service.
The companies send parents a kit to bring when their baby is delivered. The obstetrician squeezes the blood into a container that is returned to the companies.
Health insurers do not cover the process, which costs between $1,700 to $2,500 up front plus annual fees from $115 to $200. Doctors also usually charge for collection.
But heavy marketing has some physicians concerned that parents are making emotional decisions to spend thousands of dollars without understanding cord blood’s limits.
“The banks are to some degree taking advantage of a middle-class buyer. They don’t actually educate you that the chances of using it are small,” said the cancer institute’s Antin.
Earlier this year, the American Academy of Pediatrics said parents should only bank if they have an older child with a condition that could benefit.
Because genetic diseases are already present in umbilical cord blood, the cells cannot help children who later develop that type of disease, although they could help family members.
Other limitations include the possibility that the sample is too small or that the cells lose their usefulness decades after birth when many diseases being studied now might strike.
'Not made easy for you'
Private banking did not offer enough guarantees for Rhye, who sought a lesser-known option — donation to public banks that store blood for treatment and research.
“Donation for research now makes sense because otherwise how are you going to get those questions answered?” said Rhye, who has no family history of the diseases potentially cured by the cells.
Like regular blood donations, cord cells are screened for disease and cataloged for other patients or research.
More than 50,000 public samples are available for transplant, but federal officials are pushing for 150,000 through a new national registry. Several states, including Arizona and California, also promote giving.
While most experts agree more units are needed, especially among minorities, they say the 4 million U.S. babies born each year offer enough potential for public and private needs.
Even if more people donate, they add, current facilities could not handle a huge influx.
“It’s a very careful economic dance that’s being done here so we don’t overwhelm the system,” said Michael Boo of the National Marrow Donor Program, which houses the U.S. registry.
The process can be frustrating for the potential donor. Rhye found Cryobanks International, which is being acquired by BioStem Inc. and is one of the few banks offering free donation kits by mail. Most donations are made through hospital-linked banks without shipping options.
But she gave up hope of donating after her obstetrician’s staff first told her she wasn’t “allowed” to donate, then said they would charge her $200.
“You really have to want to do this because it’s not made easy for you,” Rhye said.
Still, a growing number of parents, like Alison Plotas, are not taking any chances.
Steven Grant, executive vice president of Cord Blood Registry, said his company has seen nearly 60 percent annual growth as more people choose private storage.
“You also don’t know what can happen. A lot of diseases, most diseases are not genetically based,” he said, citing anemia and brain injuries.
“It’s like an expensive insurance policy, but right now I can’t tell you what my insurance is against,” Plotas said.