The strange symptoms started when Rose Barrett’s daughter Marjorie was two years old. Random fevers. Vomiting. The Berkeley family’s pediatrician wondered if it might be something as innocuous as a sinus infection. “Then one day the disease declared itself,” Barrett recalls. “She woke up with a swollen abdomen as hard as a rock. By that evening we were at Children’s Hospital Oakland talking to oncologists, completely in a state of shock.” Marjorie had neuroblastoma, a childhood cancer of the nerve tissue. Her treatment was to be arduous: She would have surgery to remove her primary tumor, rounds of chemotherapy and radiation, and finally a bone marrow transplant in which her marrow would be removed, filtered to screen out the cancer cells, and then reinserted.
Bone marrow transplants can treat certain cancers and other diseases that attack the blood or immune systems, because marrow is one of the body’s few sources of hematopoietic stem cells — the undifferentiated cells that give rise to new blood. If the patient’s own marrow can’t be used, there are international databanks of donors willing to provide matches. But when describing the process to the Barretts, her doctors had a surprising question: Had they saved Marjorie’s umbilical cord blood?
San Bruno’s Cord Blood Registry is the nation’s biggest private bank. Credits: Courtesy Cord Blood Registry Blood from the umbilical cord can be used to treat about seventy diseases. Credits: Courtesy Cord Blood Registry Matthew and Hannah Damm after the transplant at Children’s Hospital, Oakland. Credits: Courtesy the Damm family Bertram Lubin started the sibling donor program at Children’s Hospital. Credits: Jeremy Singer-Vine Dallas Hextell underwent an experimental cord-blood tranfusion to treat his cerebral palsy. Credits: Courtesy the Hextell family Rose Barrett banked the cord blood of her two children, Rosemary and Ryan, after her first daughter, Marjorie, died of neuroblastoma. Credits: Jen Siska
It was 1997, and the Barretts had barely heard of cord blood — neither had just about anybody else, although it was soon to become transplant medicine’s new frontier.
Like marrow, cord blood is a rich source of blood-producing stem cells. It can be collected after birth from the placenta and umbilical cord, and kept frozen in case the child ever needs a transplant. Unlike transfusions from a public marrow-donor bank, a child’s own cells are a guaranteed match, which drastically reduces the risk that the body will reject them. Better yet, there’s no need to seek a match for a gravely ill child at the eleventh hour — the cord blood is already waiting in the deep-freeze.
Doctors now use cord blood to treat seventy diseases, mostly cancers and blood and immune-system disorders that previously warranted blood or marrow transplants. Neuroblastoma is on that list, as are several kinds of leukemia, sickle-cell anemia, and non-Hodgkin’s lymphoma. Researchers envision an even broader range of applications. Cord blood is being applied experimentally to combat cerebral palsy and juvenile diabetes. Some investigators believe its stem cells may one day be used for gene therapy, or to heal the ravages of heart attacks, strokes, Alzheimer’s, and spinal cord injuries. Advocates of private cord-blood banking often refer to it as a sort of “biological insurance” that will allow people an automatic do-over if serious illness strikes. In case of emergency, please break glass.
Unlike embryonic stem cells, a political hot topic due to their place in the abortion debate, there’s barely a whisper of controversy over using cord-blood stem cells. Indeed, the blood is typically considered medical waste, and ends up in the incinerator 97 percent of the time. Over the last decade or so, however, commercial banks have battled for their share of the other 3 percent.
There are public cord-blood banks that accept donations and make the blood available to anyone in need. Too risky, claim advocates for the $250 million commercial cord-blood industry, which sprang up in the late 1990s. In return for ensuring that the donor’s blood will always be promptly available, the two dozen or so for-profit “family banks” typically charge $1,000 to $2,000 to collect and freeze it, and roughly $125 a year to store it — banking the elixir from birth to age eighteen might run a family around $4,000.
Rose Barrett was an eager customer. Back in 1997, she had to say no when the doctors asked whether she’d frozen Marjorie’s cord blood. “They asked me if we saved it,” she recalls. “It made me feel terrible, but I don’t think it was that common. I don’t think they expected we would have saved it.” Even if they had, it’s not certain the cord blood would have saved her toddler’s life — Marjorie died in 1998, prior to a transplant, from disease-related complications.
The experience, however, made Barrett aware of cord blood’s healing potential. When she later remarried and had two more children, she was determined to bank their cord blood, even though neuroblastoma isn’t hereditary — Marjorie’s oncologist had told her that familial blastoma is “as rare as hen’s teeth.” Regardless, Barrett says, “It was peace of mind for me. If one of my kids were diagnosed with something horrible, we have a small chance that something might help that I didn’t just throw away.”
Barrett, an insurance company actuary, weighed her options with mathematical precision. “I figure it’s a long-term thing, like buying life insurance,” she says. “You want to work with a company that’s going to be around.” She chose the San Bruno-based Cord Blood Registry, the nation’s first and biggest private bank, and the one headquartered closest to the East Bay. The company stores its blood in Arizona, a state not prone to natural disasters — important for keeping those freezers running.
Happily, Barrett has never needed the blood she banked for Rosemary and Ryan, now six and four. The conventional medical wisdom is that she never will. Despite all the life-insurance metaphors, privately banked cord blood is a policy few families ever cash in. The vast majority of the eight thousand cord-blood transplants accomplished worldwide to date were unrelated donor matches made through public banks. Others resulted from special programs that bank the blood of siblings in high-risk families where one child already needs a transplant, or where there’s a history of genetic disease.
That’s why some of the biggest names in pediatric health — the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, the March of Dimes — advise families to donate publicly unless they have a history of illness or already have a child in need of a transfusion. These groups caution that private banks often overhype the promise of cord blood, and pressure anxious parents into shelling out for a product they will probably never use. In some countries, including France and Italy, private cord-blood banking is illegal.
Industry advocates insist the conventional wisdom is based on a narrow interpretation of what the stem cells can do today, as opposed to possible future applications, particularly in regenerative medicine. “We believe that everyone who banks their cells will someday use them for themselves or a family member,” says David Zitlow, a spokesman for the for-profit Cord Blood Registry, officially called CBR Systems, Inc. “It may not be until they are forty and are out on the soccer field and have a cartilage injury or are in need of a cornea replacement for one of their eyes or develop diabetes later in life.”
If that’s accurate, then banking a baby’s cord blood might be the best birthday present imaginable. If time doesn’t bear out this claim, though, the banked blood may end up as yet another expensive gift no one ever plays with — even when it might have saved some other kid’s life.
Public and private cord-blood banks dislike being portrayed as opponents. After all, they say, with four million births in the United States annually, there should be more than enough blood to go around — their common goal should be boosting the number of parents who bank at all. “The biggest competition,” as Zitlow puts it, “is the trash can.”
In truth, because cord-blood banking is so new, banks compete for a tiny slice of the expectant-parent market. Some resort to the hard sell. “Some companies have used sales approaches that appear focused on making the family feel that they are not being good parents if they don’t store their baby’s cord blood for future use,” notes a 2006 policy statement from the World Marrow Donor Association. Furthermore, it continues, “Some companies also provide financial incentives to healthcare professionals who recruit their potential customers, and bonuses based on the number of successfully collected units.”
Such marketing tactics give parents conflicting messages, even on the most basic question of all: Will my kid ever need this?
The odds that children will someday need their own cord blood are low — various studies have estimated odds anywhere from one in one thousand to one in two hundred thousand, according to guidelines issued in January by the American Academy of Pediatrics. Cord Blood Registry’s Web site, by contrast, claims there’s a one in four hundred chance people will need their own cord blood before age seventy, and a one in two hundred chance they will need a transplant from a sibling. That’s a dramatic difference — and quite a sales pitch.
The company couldn’t say much about the one in two hundred figure, except to say that it’s taken from an as-yet-unpublished study coauthored by Frances Verter. She’s the founder of the Parent’s Guide to Cord Blood (ParentsGuideCordBlood.org), a nonprofit foundation and Web site. Launched as a memorial to her daughter, Shai Miranda, who died of cancer in 1997, Verter’s site has information on cord-blood banks worldwide. While she’s clearly a banking advocate, Verter says she neither endorses particular banks nor accepts advertising, and that her board includes representatives from both public and private banks (including CBR’s Zitlow).
Verter says she can’t make the full study available prior to publication, but notes that her numbers are based on the frequency with which the seventy currently treatable diseases were diagnosed in the United States in the early 2000s. “These numbers do not include future regenerative medicine applications, such as ongoing clinical trials for cerebral palsy and juvenile diabetes,” she explains.
In truth, both figures are just projections. A more informative, albeit less flashy, metric is to compare how often banked blood is actually released for transplant.
Here’s how three of the biggest for-profit banks are doing: Cord Blood Registry, with 125,000 banked units, has released 53 for transplant in 17 years. ViaCord, based in Cambridge, Massachusetts, stores units from 110,000 families and has released 27 over 9 years. Cryo-Cell International, a Florida company with 135,000 clients, has released 17 over 5 years.
By contrast, in the last year alone, the National Marrow Donor Program, which helps patients find a donor match from within the nation’s public cord-blood supply, has made nearly 450 matches from an estimated reserve of around 50,000 units.
The numbers suggest that a stranger is far more likely than anyone in the donor’s family to need a particular child’s cord blood. Even if a medical disaster struck a child whose blood was privately banked, it’s not a guaranteed fix. With some diseases, such as leukemia, a child’s own stem cells can’t be used because they may well contain the genetic mutation that caused the illness in the first place.
Commercial banks would argue that stem cells from a healthy sibling are the next best thing. And while some studies indeed conclude that transplants from siblings are more successful than those from strangers, others are equivocal. What’s more, there’s only one chance in four that the blood of siblings will be compatible.
The companies have to admit as much. The small print on ViaCord’s Web site warns: “Although the potential use of umbilical cord blood is expanding rapidly, the odds that family member [sic] without a defined risk will need to use their child’s umbilical cord blood are low. There is no guarantee that the umbilical cord blood will be a match for a family member or will provide a cure.”
Zitlow, however, notes that Cord Blood Registry’s release rate is growing along with the medical applications for cord blood. “We are averaging about two transplants a month at this point,” he points out. To be fair, most banks have been in business for only a decade, and their young clients still have lifetimes ahead during which medical needs might arise.
A key sales pitch for private banks is that if disaster does strike, you know exactly where your blood is. “If you’ve chosen to donate those cells, you relinquish ownership of those,” Zitlow of the public repositories. “If you were ever in a situation where you needed those cells, there is no guarantee you’ll get them back, and no guarantee that they were even processed.”
About half of public donations are indeed rejected, usually because they don’t contain enough blood-forming cells, or they are screened out for diseases. But as for the specter of people desperately trying to reclaim their publicly donated blood? It’s simply never happened, says Darlene Haven, medical education manager for the public National Marrow Donor Program. “In the eight years of the NMDP Cord Blood Program, the NMDP is not aware of any case where a family who had donated cord blood then needed a transplant with the donated cord blood unit,” she explains. If a family ever does request a donation back, provided it’s still available, “it would likely be returned for the cost of storage and processing or billed to the insurance company.”
Advocates of public banking like to say that if everyone donated, there’d be no need for private banks — there’d be a supply so diverse that anyone could find a match, especially since cord blood is easier to match than bone marrow. The NMDP estimates that even now 95 percent of people are able to find at least one donor match within the public repositories. These banks still struggle, however, to find matches for some ethnic minorities, and people of mixed-race backgrounds.
Yet the public banking system’s limitations have almost nothing to do with private competition — the problem is that just finding a place to donate publicly can be a major hassle. “Everybody is telling women to donate to the public bank if they don’t want to do it privately,” muses Lawrence Petz, medical director of StemCyte International Cord Blood Center. “But when they try to do that they find they can’t.”
Petz should know — StemCyte is one of the few cord-blood businesses with both a private and public side. The Arcadia-based company does collections on behalf of public banks and offers a private banking service of its own. It has released more than five hundred units for transfusion, mostly unrelated donor matches collected for public donation — Petz declined to specify how many were from the private bank.
In general, women who bank privately can deliver at any hospital. The company provides instructions for her doctors, storage containers for the blood, and a courier to deliver it to a processing facility. Few hospitals collect public donations, however. Verter believes there are fewer than two hundred in the nation — the only one in the East Bay is Berkeley’s Alta Bates Medical Center, which works with StemCyte.
This, Petz says, is because collecting cord blood takes expertise, and many doctors aren’t experienced enough to collect usable samples. It’s collected via syringe from the umbilical cord shortly after birth, kept cool, and then couriered to a lab for processing and freezing. Additionally, he says, shipping individual donations from around the country to a processing center is inefficient and expensive. (Processing the blood and testing it for disease is another hefty expense.) StemCyte collects at a few large hospitals with well-trained staffs, and then ships all the units together. If you don’t happen to live near such a facility, good luck.
Congress tried to address the gap with the Stem Cell Therapeutic and Research Act of 2005, which provided funds to collect 150,000 units for public use. But some advocates of cord-blood therapy think that’s not enough — the feds have funded only six banks to date, according to Verter.
“What the field needs is what the government has done some of,” Petz says, “and that’s to subsidize cord-blood collections so that they are done efficiently and are done including minority collections, so we get well-balanced banks throughout the country.”
Anthony Portantino, a freshman state assemblyman from Pasadena, reached this conclusion the hard way. Inspired by a neighbor whose leukemia was cured after a transplant, the lawmaker says he vowed that if he ever had another child, he would donate the cord blood. When his wife Ellen became pregnant with daughter Bella five years ago, Portantino set out to keep his promise.
Easier said than done. The politician says he struggled to find a bank that would take the blood for public research. Even after he found one, Portantino laments, “I had to do all the work. I had to call the doctor and get the kit from the blood bank and be in the delivery room and hand the bag to the doctor at the point of harvesting. He handed it back to me and I had to pack it on ice and arrange for the shipping.” Although Portantino’s experience was particularly bad, who would want to deal with such a hassle when your partner is giving birth?
Small wonder that the vast majority of cord blood from the state’s 550,000 annual births goes in the garbage, even though an estimated fifteen thousand to fifty thousand Californians could benefit from a transplant. “This is really stupid,” Portantino recalls thinking. “We have the ability to cure seventy diseases and we throw this wonderful blood product away!” Although he says people should be able to use a private bank if they want, Portantino points out that the high price tag favors the affluent and, as he puts it, the “non-ethnic.”
Portantino’s very first bill, introduced on his first day in office last December, calls for five donation points to be established across the state by July 2009 with the goal of collecting 150,000 cord-blood units from mothers of every ethnic background. So far AB 34 has passed its early hearings with flying colors. It goes next to the Senate appropriations committee.
The middle ground in the public-versus-private debate lies in Oakland. In 1998, Children’s Hospital Oakland Research Institute launched the world’s first nonprofit program to bank, free of charge, cord blood from siblings of kids who need transplants. Although a public bank, its stocks, like those of the commercial banks, are available only to the donor families. A few years after its launch, with the help of a tiny blue-eyed baby, it rescued Matthew Damm from a lifetime of IV tubes and needles.
Matthew was born with thalassemia, a disorder in which the body cannot produce hemoglobin, the protein that carries oxygen through the bloodstream. He needed monthly all-day blood transfusions, and all-night injections of medicine five times a week. “Needless to say, we wanted this boy cured,” says his mom, Dawn. “We didn’t want him to have all these complications and have to live his whole life this way.”
The Damms had saved Matthew’s cord blood with the private bank Cryo-Cell, but it was of no use in his case — the treatment for thalassemia is a marrow or cord-blood transplant from a disease-free sibling. Matthew was an only child, however. Dawn and her husband Gary, both carriers of the gene for thalassemia, hoped to have another baby, but knew they risked ending up with two sick kids. Although some couples might have turned to in vitro fertilization, Dawn says, “We just put it in God’s hands.”
Four years later, she became pregnant with a daughter, Hannah. Although the family lives near San Diego, they’d been taking Matthew to Children’s once a year because of its stellar reputation for treating thalassemia. The Oakland doctors suggested they bank Hannah’s cord blood through the sibling program. If she was negative for thalassemia, and a match for her brother, they could try a transplant that would essentially replace the boy’s blood with Hannah’s. Matthew would be given intense chemotherapy to wipe out his own bone marrow, and his sister’s cord blood would be transfused into his body. If all went well, her stem cells would find their way into his bones, where they would produce healthy blood. It would be brutal, but it might cure him.
Sure enough, Hannah was a match. “We were thrilled, but also really scared,” Dawn recalls. “That meant we had to do it.”
Not only were they worried for their son, but the Damms knew they were using their one chance with Hannah’s blood. “It was at the back of our minds — ‘Now she doesn’t have any cord blood if she should need it,'” Dawn says. Ultimately, she says, they made a decision: “This is what Matthew needs right now. We’ve been praying for a cure for him for five years and here comes an opportunity.”
The family moved to Oakland for the four-month process. The actual transfusion, in which Hannah’s cord blood was piped straight into Matthew’s heart, took less than half an hour, but his recovery from chemo was slow. He vomited constantly. He didn’t eat solid food for a month. And it took an unusually long time — 27 days — before there was any sign his blood cell count was rising. Then there was an agonizing wait to see whose cells they were, Matthew’s or Hannah’s. If the boy’s own cells were growing back, the transplant had failed.
Happily, the blood was 97 percent Hannah’s, but Matthew wasn’t in the clear yet — the chemo had quashed his immune system, and he was still taking drugs to suppress it so it wouldn’t attack the transplanted cells. The family returned home, and spent a year in isolation to protect Matthew from germs — no visitors, no school, no birthday parties, no church. Lots of hand washing. If he went outside, he wore a mask. At the beginning he looked weak, his mom says: “He didn’t gain any weight for a year,” she recalls. “He was bald but his hair was growing back. His coloring was off — he still had a gray look to him.”
But this year, Matthew has turned a corner, growing a few inches, gaining five pounds, going back to school. Now six, he requires no medical treatment beyond a daily vitamin and a little ice cream to help him gain weight. “He’s doing great,” Dawn reports. If his symptoms don’t return by September, the two-year mark, he’ll be considered cured.
Does Matthew understand the special biological bond he shares with his sister? His mom thinks so. Not too long ago, she says, the boy confided to his grandfather, “Did you know Hannah saved my life?”
That’s the sort of victory Dr. Bertram Lubin envisioned when he founded CHORI’s sibling donor program. Originally intended just for families with sickle cell and thalassemia, blood disorders in which Children’s Hospital has special expertise, the program quickly expanded due to demand. As with private banks, moms can deliver at any hospital — delivery-room doctors collect the blood with a kit provided by Children’s, whose staffers talk the obstetrician through the procedure by phone.
The obvious difference is that only families with a demonstrated need can participate. No doubt because of its targeted client base, Children’s Hospital Oakland has the world’s highest donation-to-transplant ratio: about one hundred transplants from just two thousand donations.
Some commercial banks, including Cord Blood Registry and Los Angeles-based Family Cord Blood Services, also have programs that let siblings of sick kids bank for free — when federal funding for the Children’s Hospital program ran out, it partnered with ViaCord, which now offers a sibling donation program through the hospital. Lubin says these programs have beefed up the transplant release rates for private companies. Indeed, he says dryly, “If they didn’t do it, they would almost not release any units.”
That’s something the industry would rather not acknowledge — Cord Blood Registry, for one, wouldn’t provide a breakdown of how many of its transplanted units came via such a program. It’s nevertheless clear that privately banked cord blood is seldom used by the donor child. As of June, only 26 of the 203 transplant units released from private banks had gone to the donor, Verter says. On the other hand, at least 37 of Cord Blood Registry’s 53 released transplant units; 22 of Viacord’s 27; and 7 of Cryo-Cell’s 17 went to the donor’s siblings.
Yet while few transplants come through private banks, StemCyte’s Petz says it’s important to remember that they save lives — often for kids with no alternatives. “It’s very difficult to find a match for some patients,” he points out. “If they don’t have a sibling that’s a good match, they have to go to a registry and they may or may not find a donor that is adequate. If it weren’t for cord blood, that would be the end of the story.”
Zitlow encourages parents to think of cord-blood banking as a kind of “preventative medicine” that may have more uses in the future. While this year’s American Academy of Pediatrics guidelines firmly recommended public over private banking, citing the low odds of use, Zitlow believes the group’s analysis is a bit outdated. “It’s an area of science that is changing rapidly,” he says. “I think we’ll start to see those guidelines continue to change.”
Even Lubin, who helped write the AAP guidelines, will acknowledge that the science is changing. “It doesn’t mean some future research wouldn’t prove it to be of value for things we don’t even consider now, like diabetes,” he says.
His coauthor, Dr. Mitchell Cairo of New York Presbyterian Hospital, one of the earliest investigators of cord-blood transplants, foresees a similar expansion in the field. “We think there is great potential not just for the regular diseases we treat today with stem cell transplants, but in the future to utilize this for a whole host of [non-blood-related] and cancer-related diseases,” Cairo says. “But it’s not going to happen next year. We see this as a ten- or 25-year process of trying to harness the potential of cord blood.”
Of course, guidelines are just generalizations, and there are always exceptions. Had his parents had followed the AAP guidelines, Dallas Hextell wouldn’t have been on a plane to Duke University last month for a second chance at a normal life.
Dallas is the Hextells’ only child, so they had no other kids who needed transplants. Moreover, since he was conceived through in-vitro fertilization, his parents Cynthia and Derak had been through rigorous genetic screening that hadn’t turned up heritable diseases.
Yet during her pregnancy, Cynthia Hextell kept seeing pop-up ads for Cord Blood Registry on pregnancy Web sites. “I had never even heard of cord blood, but I’m a huge researcher,” she recalls, so although she really had no reason to think she’d need their services, she sent away for brochures from a half-dozen companies. Although the prices gave her some pause, she ultimately signed up with Cord Blood Registry. “It’s the same as medical insurance or life insurance — you pay for it but most likely you’ll never use it,” she decided. “I would rather have spent the money and never used it, than have not spent the money and regretted that I didn’t get it.”
Her pregnancy was normal, but when Dallas was born, she recalls, “Not even the doctors realized it, but I felt like something was wrong.” As a newborn, the parents couldn’t get him to nurse. Once they brought Dallas home, they noticed that his eyes were often closed, and he seemed overly sensitive to light, noise, and moving objects. At six months, when Dallas still couldn’t sit up by himself, Cynthia brought him to a pediatrician, who said he was fine. Still concerned, she insisted on seeing a neurologist. After a fifteen-minute examination, the neurologist told them their son had cerebral palsy. “It was shocking,” she recalls. “We were not expecting that at all. It sounded like a horrible word. I thought it was the end of the world.”
At eighteen months, the Sacramento toddler still didn’t speak. He could get around thanks to a walker, but couldn’t crawl — he scooted across the floor on his stomach.
Cerebral palsy is not on the list of seventy diseases, but doctors at Duke have used cord blood to treat a small number of children with cerebral palsy or brain damage, and Cynthia Hextell asked to be put in touch with some of their mothers. The procedure is still in the research phase, and parents are warned there’s no way to measure the effect the stem cells have on their kids’ brains, or even to know if the transplant provokes changes that wouldn’t have happened anyway with age. However, the moms Hextell spoke with said they’d noticed improvement after their kids’ transplants, sometimes with speech, sometimes with spastic limbs.
The Hextells were encouraged, but had some doubts. Their insurance wouldn’t cover the $12,000 procedure. They also wondered if they should to wait for a more proven therapy to come along later, or in case Dallas needed his cord blood for something more urgent — cerebral palsy isn’t life-threatening, after all. “There was such a small amount of cord blood,” Cynthia recalls. “I have to make this decision — am I wasting it on this?” Ultimately, she and Derak decided it would be best to try the transfusion while Dallas was young, and his brain was still developing.
Last month, Dallas Hextell became the ninth child to have such a transplant at Duke. His physician, Dr. Joanne Kurtzberg, director of the Duke University Medical Center’s pediatric blood and marrow transplant program, is straightforward about how very experimental this process is. “We don’t know if these cells will be able to help them,” she writes. “We also don’t know how they will help if they do. Theoretically they could help repair damaged cells and/or replace damaged cells. Both are possible, but we don’t have a way to know which of these two things might occur in these patients.”
If you ask Cynthia Hextell, her son has shown definite improvement in the month since his transplant. “When we returned home, Dallas said ‘mama’ just five days after the procedure,” she notes via e-mail. “He had no speech at all before. His muscle strength has improved greatly and he seems more alert and aware of what is going on around him. He also began to laugh at about a week after the infusion. He never laughed before; he would just kind of screech. He had a lot of sensory issues and would not use his hands to do things, but instead would take your hands and guide them to do what he wanted. Since the procedure he has began to clap his hands and wave, which he did none of before.
“We are very happy with the results and continue to see improvement daily,” she continues. “We are thankful for anything the cord-blood infusion gave Dallas to improve his cerebral palsy.”
Cord blood also is being tested on a far more common condition. The American Diabetes Association recently announced preliminary results from a small pilot study in which cord-blood infusions appeared to slow the progress of juvenile diabetes. Perhaps, the researchers theorize, it slows the destruction of insulin-producing cells, but further study is needed.
It’s exciting to imagine regenerative uses for cord blood, but they remain unproven. In the meantime, doctors say they can already do much good using available cord-blood methods — enough to warrant expansion of the public banks. “Until science advances to where there is really evidence that your own autologous cord blood could be used for regenerative repair, unless there is a family disease that is potentially curable with a cord-blood transplant, people who want to donate should donate for the greater good of the public,” says cord-blood pioneer Mitchell Cairo of New York Presbyterian. “There is currently a huge need for patients worldwide to have access to unrelated cord blood.” The physician notes that fewer than three hundred thousand cord-blood units have been stored worldwide, while bone-marrow and regular blood-bank donor registries run more than ten million listings.
Even so, it’s hard to compete with the attraction of security for your own family, for that security — not utility — is ultimately what the commercial banks are selling. Oddly enough, despite all the sales pitches designed to convince parents that cord blood is useful, it’s infinitely more comforting to think of it as something you won’t ever have to defrost. When Rose Barrett considers the cord blood she banked for her two kids, she’s perfectly content to have paid for something still sitting untouched in an Arizona freezer. “The best use of my money would be if we never needed it,” she says.
