Cord Blood Banks: A Worthwhile Investment?

March 3, 2005, — -- 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?

Like bone marrow, cord blood has been shown to be effective in therapeutic transplants to treat a range of diseases, including leukemia, lymphoma and various genetic disorders. The few teaspoons of blood drawn from an umbilical cord once it has been detached also contain stem cells, which hold further promise of treating a broader range of conditions in the future -- minus the controversy now associated with embryonic stem cells.

"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.

"That's something the company didn't tell us," she said.

Fortunately, a match from a donor in a public cord blood bank was found and today, after treatment, he is doing fine.

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.

Budget Cut or Boost Ahead for Public Banks

Some 30 private cord blood bank companies currently have hundreds of thousands of holdings from families who, like the Doneses, pay an initial fee and then annual fees to bank blood for up to 18 years.

According to private cord blood companies, the number of parents deciding to store their children's cord blood is climbing every year. Steve Grant, vice president and co-founder of the California-based Cord Blood Registry, one of the largest private cord blood banks, reports its number of clients has doubled each year to its current holdings of 270,000 units. For the most part, these units 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.

In his proposed 2005 budget, President Bush has called for cutting $9.9 million from a federal program that was designed to help public cord banks increase their stocks. At the same time, Congress is mulling a bill (HR596) that would designate more federal money to help increase the current public bank's holdings to 150,000 units.

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 search for a match can be especially hard for non-Caucasians. Michael Boo of the National Marrow Donor Program, which is part of the public cord blood bank system, says minorities needing transplants find matches 60 percent of the time while Caucasians get matches 75 percent of the time. This is due to the mostly white donor base in the bone marrow pool.

A more robust public cord blood bank could fix that gap, Boo explains.

Umbilical Cord Blood -- Pliable Life-Savers

Medical researchers discovered in 1988 that cord blood cells worked just as well as bone marrow in transplant therapy for diseases such as acute anemia and leukemia. Cord blood cells, they found, also have an added benefit -- they are younger and therefore more pliable when it comes to meshing with a new patient's blood.

"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."

The collection process is non-intrusive. After a new mother decides to bank or donate her child's umbilical cord blood, she completes a consent form and health history. Once the baby is born, the umbilical cord is clamped and a hospital staff member uses a syringe or other instrument to withdraw blood from the cord and placenta. The procedure takes about 10 minutes.

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.

Public 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.

Right now each donation is a one-shot deal because, unlike embryonic stem cells, blood stem cells can't multiply in a culture dish. Scientists are working now to see if they can overcome this problem so that existing blood units might yield "lines" of cord blood cells that could be used again and again in transplant therapies.

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.

It's something that Frances Verter wished she had done for her daughter. Shai developed leukemia at age 4 and her doctors could not find a suitable donor among public bank systems. Shai's mixed heritage may have been a factor in the struggle to find a match -- Verter is Ashkenazi and Shai's father is Puerto Rican.

Since her daughter's death in 1997, Verter has banked the cord blood of her two other children. She has also set up a Web site (www.parentsguidecordblood.com) to help parents decide among the growing number of private companies offering the service.

Karen Goodman, a New York City resident who gave birth to her second child this month, also decided to bank her children's blood. In fact, when her water broke at a diner across the street from her apartment, her first thought was not to dash straight to the hospital, but to get her cord blood banking kit and then go to the hospital. She and her husband made the detour.

"Unfortunately, cancer runs rampant in my family," said Goodman, who paid the Cord Blood Registry to bank her son and daughter's cord blood. "Knowing the blood is there gives me some comfort. It was not a tough choice."

For those with more financial pressure, however, it can be a difficult decision, particularly if their doctors say it is unnecessary.

Pressure to Invest

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.

"I think the private bank option can confuse the situation," he adds. "Young people have so many worries and this is just another thing that can worry them as they're starting a family. It really shouldn't."

In the meantime, Civen and others are hoping that public cord banks will get the funding they need to bolster their supplies so more people seeking transplants may get them.

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."