Banking on a Lifeline
When Melissa Segal of Studio City became pregnant with her first child, she got lots of advice. But she says one of the most useful tips came from a girlfriend who suggested she bank her newborn’s umbilical cord blood.
Cord blood is high in stem cells, which are capable of developing into red blood cells, white blood cells and platelets. Because of that, doctors sometimes use cord blood transplants as an alternative to bone marrow transplants for patients suffering from blood diseases such as leukemia and immune system disorders.
As far as Segal knows, no one in her family is at risk for such diseases, so there was no immediate need to save the cord blood of her son, Jack, now almost 2. But because people do get sick and transplants often require excruciatingly long and sometimes fruitless searches for tissue match donors, Segal and her husband felt that they were doing the equivalent of taking out a health insurance policy.
It isn’t cheap. The family paid $1,200 for the procedure and receives an annual $95 bill for storage. But to Segal, it’s worth it. “Even though most likely we’re never going to need it, once I found out about it, I had to act on it, because God forbid that something should happen,” she says. “It makes me feel so much more relaxed now that we have this. I think it’s just wonderful. I’m telling everyone I know who is pregnant.”
The collecting and banking of umbilical cord blood is on the rise in the United States as medical technology advances and more people become aware of the extraordinary potential of stem cells.
Unlike the hotly debated use of stem cells from aborted tissue, the beauty of a cord blood transplant is that people of every political stripe agree it uses a completely extraneous waste product--the newborn’s umbilical cord--that would otherwise be thrown away. (There are exceptions among certain religious or ethnic groups. For instance, the Hmong people of Southeast Asia have a tradition of burying the placenta.)
Doctors have known since the 1980s that stem cells found in cord blood--so called because other cells stem from them--are a useful tool in fighting blood and immune system diseases. Since 1988, they’ve completed approximately 2,000 such transplants.
But the umbilical cord industry is still, well, in its infancy. There is a growing number of banks, but most are not interlinked, and the lack of centralization can make it laborious for doctors and patients to search for a tissue match. Collecting cord blood is expensive, requiring personnel trained in obtaining and storing it. Many people are opting to bank their cord blood privately, reserving it for their own use, instead of donating it to public blood banks. And only certain hospitals perform the collection procedure for parents who want to donate.
In Orange County, the only hospital accepting cord blood donations is St. Joseph’s in Orange. That means women who want to donate their newborn’s umbilical cord have to give birth at that hospital, which has the personnel and equipment at hand to collect the cord blood.
In Los Angeles County, the UCLA Umbilical Cord Blood Bank until now was the sole public cord blood bank, collecting cord blood from patients delivering babies at Cedars Sinai, Torrance Memorial, Garfield, UCLA and Long Beach Memorial medical centers.
But UCLA’s federal funding for this project has ended, and now a new public blood bank, Arcadia-based StemCyte Inc., is hoping to pick up where UCLA left off. Company spokeswoman Sandra Cramer-Mason says StemCyte has negotiated contracts to collect donated cord blood at Garfield Medical Center, White Memorial Medical Center, Torrance Memorial and Arcadia Methodist Hospital and is in negotiations with some of the hospitals previously served by the UCLA cord blood bank.
The best thing expectant mothers can do is call the hospital where they plan to deliver and inquire specifically about donations of cord blood. A list of hospitals accepting cord blood donations is also available by visiting https://www.marrow.org or calling (800) MARROW2.
Also, a dozen or so private firms have sprung up in the last decade, offering consumers a way to collect and store their newborn’s cord blood so that it can be available in case a family member develops a blood or autoimmune disease. Some of these firms, including Cord Blood Registry in San Bruno, Calif., waive the fee for families that need the cord blood for immediate transplants.
“Let’s say a kid has leukemia right now,” explains Sam Yoo, a company spokesman. “If the family signs up into our designated transplant program and we get an OK from their doctor saying they are having a cord blood transplant in lieu of a bone marrow transplant, there’s no cost involved. We try to help out.”
Founded in 1994, Cord Blood Registry now stores 26,000 units of cord blood and Yoo says a “substantial number” of those have been collected in the last several years as awareness about cord blood has grown.
But collecting and storing the 2 to 3 ounces of cord blood found in a typical umbilical cord is expensive--that’s why in the public sector it is only done at certain sites nationwide. So although approximately 4 million babies are born each year in the United States, cord blood is preserved in only 1% of those births.
Then there’s the lack of centralization. The dozens of public cord blood registries in the United States today are not linked up to a central computer. The National Marrow Donor Program--which operates the largest bone marrow registry in the world, containing 4 million domestic donors and access to 1.5 million more abroad--recently launched such a program for cord blood. So far, it has signed up eight cord blood banks with a total of 9,796 units, according to Kathy Welte, the National Marrow Donor Program’s program manager for cord blood.
But many cord blood banks remain outside the marrow program’s reach or prefer to remain independent, which means that a doctor seeking a match for a patient has to search laboriously through each cord blood bank registry for a donor with suitable blood tissue typing.
Promising Results From Transplants
Cord blood transplants require much the same tissue match as bone marrow transplants. In both cases, doctors look at the human leukocyte antigens, which are protein markers on the surface of white blood cells. They examine six different characteristics on the antigen, three of which are supplied by each parent. The ideal transplant involves a match of all six characteristics, but bone marrow transplants with five out of six matching characteristics have also been successful.
With cord blood transplants, doctors have experienced some success when up to two of the six are mismatched, which means the search for a donor may be less rigorous for cord blood than for marrow. Medical experts also say that transplanted cord blood is less likely to trigger rejection in the patient, the so-called graft versus host disease, perhaps because the neonatal cells are more nascent and adaptable.
“Umbilical cord blood appears to be less likely to mount an immune response against the patient, despite a greater human leukocyte antigen mismatch between donor and patient,” confirms Dr. John Wagner, the scientific director of clinical research of the Blood and Marrow Transplant Program at the University of Minnesota in Minneapolis. He also is a board member of National Marrow Donor Program.
Wagner is an international pioneer in cord blood transplants, having done more than 200 of the procedures in the last decade. Most recently, he was in the news for performing a cord blood transplant on a 6-year-old Denver girl named Molly Nash who suffered from the rare and fatal blood disorder Fanconi anemia.
The girls’ parents, Lisa and Jack Nash, decided to have a second child in hopes that the new infant’s cord blood could provide a transplant source for Molly. For them, this was a last and best resort, since the survival rate in Fanconi anemia patients who received a matching sibling transplant of cord blood was 85%.
Dr. Dennis Confer, chief medical officer with the National Donor Marrow Program in Minneapolis, says the survival rate for such patients who received unrelated donor transplants is only 35% to 40%. (That percentage is rising as doctors perfect cord blood transplants, he says.)
But there were also hurdles to overcome. The Nashes learned they had a one-in-four chance of having another baby with Fanconi anemia. Second, they needed to have a baby with an HLA blood match that could be transplanted into Molly without rejection.
Enter the latest in test tube baby technology. Wagner was able to fertilize Lisa Nash’s eggs in the lab and use pre-implantation genetic diagnosis to screen the eight-celled embryos for genetic abnormalities such as Fanconi anemia and the HLA match that Molly’s blood needed. Only suitable embryos were implanted.
After several failed attempts to become pregnant and a miscarriage, Lisa Nash delivered a baby boy last August whom the family named Adam. The following month, Molly, whose health had continued to deteriorate, received a stem cell transplant using blood from Adam’s umbilical cord. Almost a year later, the transplant appears to have succeeded, and doctors hope Molly will lead a long and healthy life, although she may be more at risk for certain cancers due to the radiation and chemotherapy she received to kill her diseased blood cells to make way for the transplant.
It’s a dramatic story with a happy ending, but as Wagner points out: “This is not new, the technology’s been used for the past decade at least. What I did that was novel was to put the three technologies together for the expressed purpose of creating a donor who would be disease-free--in this case from Fanconi anemia--and HLA-matched with Molly, the child who needed a transplant.”
But the Nash case also brings to the forefront the uneasiness that medical ethicists have with the manipulation of biology.
Alexander Capron, co-director of USC’s Pacific Center for Health Policy and Ethics, concedes that there is little risk to the baby or mother in the harvesting of cord blood, unless the delivering doctor becomes so caught up in extracting the cells that he or she fails to attend to problems that the mother or her emerging infant might experience.
“Harvesting cord blood seems the most innocuous of procedures,” Capron says. “But the matter of a person being created for that reason, that’s not a comfortable situation.”
Capron also wonders whether private blood banks aren’t capitalizing on parents’ fears in their quest to sign up new business. “Some of us in the bioethics community thought that was something to prey on parental anxiety,” Capron says. “It’s highly unlikely that some child is going to need this.”
But for increasing numbers of Americans, it’s a worthwhile toss of the dice, even at steep prices.
Process Starts With the Parents
Here’s how it works: Consumers can call or e-mail a cord-blood storage company for an informational packet. After paying a fee and enrolling in the registry, the family receives a cord blood collection kit, which they pack up and take to the hospital along with other personal belongings when the woman goes into labor.
The cord blood is collected immediately after the delivery. Wagner says that typically, the placenta is delivered and taken to a special room outside the delivery suite, where it is suspended in the air. A needle is placed in the large blood vessels in the umbilical cord and the blood simply drains out by gravity.
The collected blood is then sent to a designated laboratory, where it is tested to ensure it is free of infectious agents such as HIV and hepatitis and from genetic diseases such as sickle cell anemia. Then it is stored in liquid nitrogen until needed for transplant. It can be stored this way indefinitely, Wagner says.
So Far, Most Transplant Recipients Are Children
The transplant itself is a deceptively simply procedure in which the donor blood is infused into the patient in less than an hour. The hope is that the new cells will flourish and revive the defective marrow. Prior to the transplant, the recipient of the cord blood must undergo radiation and chemotherapy to rid the body of diseased cells.
Due to the small amount of cord blood yielded by the average umbilical cord, most transplant recipients so far have been children. But Wagner says that it is the cell count in the blood, not the quantity itself, that determines its suitability for a patient.
“While it is less likely to find a suitable umbilical cord blood graft for a larger patient, you cannot predict. We have successfully transplanted a patient that weighed 220 pounds,” Wagner says. Because larger patients typically require greater quantities of stem cells for a successful transplant, Wagner has started to transplant cells from two matched donors when one does not suffice. He also has received two National Institutes of Health grants to study the feasibility of expanding the number of cord blood stem cells in the laboratory prior to transplantation.
Wagner says cord blood transplants are especially important for patients who, because of the severity of their illness, cannot wait for the completion of a marrow donor search or who cannot find a match with an unrelated donor. Additionally, there are more stem cells found in cord blood than in bone marrow and they have a higher chance of proliferating. Wagner says cord blood transplants also boost the chance of finding donors for minority patients, which are already underserved because minorities, for various cultural reasons, tend to donate marrow less than whites.
Research is progressing on other fronts as well. Just last month, a team of researchers from UCLA and the University of Pittsburgh isolated stem cells from liposuctioned fat and turned them into bone, cartilage and muscle.
Still, “a lot of work remains to be done between the discovery in the lab and the delivery of stem cells [from fat] to patients to help cure disease,” says Confer, of the National Donor Marrow Program.
Meanwhile, in Studio City, Melissa Segal, now five months pregnant with a second child, is adamant that she wants to donate her new baby’s cord blood to a public registry that will bank it until the time that a patient with matching blood type needs it. (She figures the blood she has already banked will cover any problems that might arise with her next child.)
“It’s just thrown away, so why not donate it?” Segal says.
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How Cord Blood Retrieval Works
* The pregnant woman is asked about her medical history.
* After the birth of the baby, the umbilical cord and placenta are taken to a nearby room where cord blood is collected in a special blood bag.
* A courier transports the blood to a laboratory, where it is tested for infectious and genetic diseases. If free of disease, the blood is moved into long-term storage until it is needed.
* The blood is “tissue typed” to allow it to be matched with a patient with a life-threatening disease. If a matched patient is found, the frozen blood is sent to the doctor for the transplant.
