When she was pregnant with her first son, Tracey Dones and her husband, like many couples today, faced a tough decision: Was it worth the $500 to $1,800 fee and then annual payments up to $100 to have a private company bank blood from her child's umbilical cord?
"In the end, I said to myself, how could we not do it?" Dones said about their decision to bank Anthony's cord blood. "It could save my child's life."
But when Anthony was diagnosed with a rare genetic bone disorder at four months and needed a transplant, she learned his banked blood would not help. Those cells, her son's doctor explained, contained the same genetic defect that was causing his condition.
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When she was pregnant with her first son, Tracey Dones and her husband, like many couples today, faced a tough decision: Was it worth the $500 to $1,800 fee and then annual payments up to $100 to have a private company bank blood from her child's umbilical cord?
"In the end, I said to myself, how could we not do it?" Dones said about their decision to bank Anthony's cord blood. "It could save my child's life."
But when Anthony was diagnosed with a rare genetic bone disorder at four months and needed a transplant, she learned his banked blood would not help. Those cells, her son's doctor explained, contained the same genetic defect that was causing his condition.
Dones says her story emphasizes the need to bolster cord blood supplies within the public cord blood network. Currently, only a handful of hospitals across the country are equipped to handle public cord blood donations. The option to pay to have your own child's cord blood stored for personal use, meanwhile, is not only widely available, but competitive.
For the most part, [cord blood units in private banks] are held exclusively for the use of the families who paid to have them stored.
"There's no question it's an elective and not a necessity," said Grant, who reports that 36 of his company's 270,000 clients have tapped their stored cord blood units for transfer therapy. "But there is a strong case for attaining this unique genetic resource for its known and emerging uses. It's an investment."
Public cord blood banks, meanwhile, are struggling to increase their holdings above the current level of 60,000. A couple of proposals now under consideration could help or hinder that effort.
Rich Miller-Murphy of the New York Blood Center , a public cord blood organization, explains having 150,000 cord blood units on hand could ensure that 80 percent to 90 percent of those seeking a match for transplant therapy would find it. With its current holdings, about a quarter of patients seeking a match can't find them among bone marrow and cord blood holdings.
"The level of matching is less critical with cord blood," said Boo. "The cells are thought to be more primitive and therefore they're better tolerated than adult bone marrow cells."
Until recently, cord blood was considered suitable only for children due to the small amount of blood per donated unit. But a new study led by Mary Horowitz of the Medical College of Wisconsin showed that cord blood can also save adults.
Currently anyone can try and sign up to donate their child's umbilical cord blood, but there are only some 23 public cord banks in the United States and fewer than 65 hospitals throughout the country are equipped to accept donations. Cord banks are also limited in the number of donations they can accept so they usually screen potential donors to make sure they're getting donations that meet their needs for a diverse gene pool. Most banks plan to hold donated units for up to 10 years, but that may be extended if studies demonstrate that the cells remain viable for longer periods.
With the public bank system still lacking, a match can't always be guaranteed. That's why many families continue to bank their child's cord blood in private banks - just in case their child or another family member needs the blood for treatment.
The American Academy of Pediatricians issued a statement in 1999 saying there is "no strong evidence to recommend routine cord blood banking for an infant's future use." Many pediatricians issue similar advice to their patients, although some may suggest that parents consider paying for the storage if their family has a history of illnesses that can be treated by the cells. The National Heart, Lung and Blood Institute estimates the likelihood that a child will use his or her own stored cord blood cells is 1 in 200,000. Other groups have set the chances higher, at 4 in 10,000.
"If the choice were to instead use that money and start a college fund, I would advise parents to put the money in a college fund," said Curt Civen, a professor of oncology and pediatrics at Johns Hopkins University School of Medicine.
Dones, whose son is now 2 years old, has traveled to Washington , D.C. , to testify to members of Congress about how public cord blood banks saved her son's life.
"You can't pick up a pregnancy magazine today without seeing ads from private cord blood companies," she said. "It's about time public cord banks got more attention."
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