When Pat Lilja's son was born in March 2000, he and his wife Laura took out what he calls an "insurance policy that works." But supplementary benefits through their HMO is not what he's referring to.
Moments after Benjamin Lilja was delivered, instead of routinely discarding the umbilical cord, labor nurses inserted three syringes into the cord and extracted approximately 50 cc's of blood. Later, the Liljas shipped the syringes with the cord blood to a private company, which would store it in frozen form at the University of Arizona.
Their biological insurance lay in the form of stem cells, immature cells which have the potential to develop into other types of cells such as muscle or bone. These are found in cord blood and have attracted the attention of researchers as a lifesaving resource for transplantation in patients with leukemia and other conditions.
Should Benjamin ever fall victim to those ailments, the Liljas hope the stored stem cells will be waiting for him, avoiding a protracted search for a suitable donor.
The procedure "went without a hitch," Lilja tells WebMD. "It's a little bit of extra peace of mind. There is growing list of diseases that are potentially treatable with stem cells."
Procedure Simple -- But Storage Can Get Costly
Interest in cord blood as a source of stem cells and as an alternative to bone marrow transplants is expanding -- for various reasons.
Matching the donor to the recipient does not have to be quite as precise when using cord blood as it does when using bone marrow, so the chances of finding a suitable donor are increased. And because of the immaturity of stem cells in cord blood, patients are less prone to "graft vs. host" disease -- a common occurrence when the recipient rejects transplanted blood cells, experts say.
And, of course, if the cells are reintroduced into the same person they came from, there's no chance of rejection.
Consequently, banking of cord blood by expectant parents is on the rise. Michelle Linn, of Boylston, Mass., chose to bank her son Ryan's blood because his father is adopted.
"We don't know anything about his medical history," she tells WebMD about her husband. "We've tried without success to obtain information but don't know any of his blood relatives. It seemed like a simple thing to do that could give significant benefit."
But banking cord blood through private companies can be costly. The Liljas used Cord Blood Registry (CBR), in San Bruno, Calif., who charge a first-time fee of $1,250 and then an annual storage charge of $95.
David Harris, PhD, director of CBR's cord blood bank, says storing cord blood is a wise investment when you consider the inevitability of future advances in stem cell research.
"Today we can use stem cells for blood cancers, some solid tumors, and genetic diseases," he says. "But what will we be able to use it for in the future? Gene therapy will expand, and tissue engineering is going to explode. Though I might not get cancer, when I consider all these future possibilities, the likelihood [of needing stem cells] might go up several hundred times. And when you amortize the costs, it's insignificant."
Better Safe Than Sorry?
Harris, who has banked cord blood for his own children, says that on the basis of current capabilities, the chances of a person needing stem cells is in the range of 1 in 2,000.
Yet that is surely on the low end of estimates. In 1999, the American Academy of Pediatrics (AAP) released a statement recommending private banking of cord blood only when there is a family member with a current or potential need to undergo a stem cell transplant.
"The range of estimates [for likelihood of using stored stem cells] is from 1 in 1,000 to 1 in 200,000," according to the AAP statement. "Given the difficulty in estimating the need for using one's own cord blood cells for transplantation, private storage of cord blood as biological insurance is unwise."
The AAP does recommend philanthropic donation of cord blood to public banks.
Yet as Harris points out, private companies will store cord blood shipped from anywhere in the world, but public banking is accessible only at hospitals and centers that provide the service.
Lilja says he never considered the option of using public banks -- because he was unaware they existed.
While private banking companies have sprung up around the country -- with a number going out of business in recent years -- public banks have been slower to develop. There are currently just eight public cord blood banks in the National Marrow Donor Program (NMDP) registry.
The NMDP web site lists some 17 centers around the country that also accept cord blood donations but which are not members of the registry.
People who donate cord blood can, theoretically, retrieve their own donation should they need it before the units have already been used for transplantation, points out Vicki Slone, PhD, manager of the cord blood bank at Children's Hospital of Orange County, Calif. And because donation is free, it is liable to be a more accessible option for poorer families and those from diverse ethnic backgrounds -- thereby increasing the pool of transplantable stem cells for those groups, Slone says.
Questions of Ethics -- and Law
Although it's never been firmly established in a courtroom, most legal experts consider cord blood to be the property of the baby -- and the parents are guardians of this potentially lifesaving material. Upon deciding to bank cord blood privately, some parents have drawn up legal documents in which they designate that upon reaching age 18, the child can take over guardianship of the cells.
Legal issues also arise with respect to the collection process. In contracts with parents, private blood banks usually try to absolve themselves from any responsibility if, for instance, the cord blood isn't collected during the baby's delivery, or if the blood sample isn't usable when it's needed.
There is also the question of who has access to the cord blood's hidden information -- the diseases and genetic traits shared by both infant and parents. Parents should find out what the bank's policy is in regard to screening cord blood and ask whether all identifiers are stripped from the blood samples in order to protect the donor's privacy. Many physicians will advise their patients against donating cord blood to a blood bank that retains patient identifiers.
Best Use of Money?
The technical hurdles surrounding use of cord blood stem cells has created resistance to their use in transplantation -- and hence to more widespread adoption of public banking by hospitals, says Rebecca Haley, MD, interim chief medical officer of the biomedical services of the American Red Cross.
Because the immaturity of stem cells in cord blood requires a long waiting period for them to multiply following transplant, there is an increased risk of infection during the interim
"That can be expensive for hospitals because they have to support the patient," Haley tells WebMD. "No hospital wants to hear about a more expensive mode of doing things. Under managed care, the hospital may only get so much for each transplant, and if they overspend the hospital has to absorb the margin."
The American Red Cross currently has seven active cord blood collection sites around the country.
Bioethicist Art Caplan, PhD, says parents cannot be faulted for banking their child's cord blood but suggests that public banking is preferable.
"People will pay quite a lot for their children's health," he tells WebMD. "I worry that people will select storage as much from guilt as they do from thinking what is the best way to spend their money. I think the best interests of the public are not served by having a privatized system. We will all be better off if we come up with a nonprofit system."
Caplan is director of the Center for Bioethics at the University of Pennsylvania Health System.
Yet it is likely that many expectant parents will opt for private banking. So what should they know before they go into it?
Lilja urges parents to scrupulously research the private company they choose, and to enlist physicians and labor nurses in their decision. Because cord blood banking is still not mainstream, some healthcare professionals may be unfamiliar with the practice, he says.
"Make sure you know how the procedure is supposed to go and make sure you talk to doctors and labor and delivery nurses," Lilja advises. "They are probably not going to have any idea what you want to do. You have to be your own advocate, or it's not going to happen."
Mark Moran is WebMD's Cleveland regional reporter, writing about medicine, science, and health policy throughout the metro area.