Insurance -- or Reassurance?
When Tracey and Victor Dones's 4-month-old son was diagnosed with osteopetrosis, a potentially fatal disorder that affects bone formation, the panic-stricken couple was relieved to hear that a stem-cell transplant could save his life. "We'd paid to store Anthony's umbilical-cord blood in a private bank in case he ever needed it -- and I thought we were so smart for having had the foresight to do that," says Tracey.
The Doneses were shocked, however, when doctors told them that Anthony's cord blood couldn't be used because the cells contained the same genetic defect that caused his condition. "The materials provided by the bank said this was Anthony's life insurance and could save him if he needed it. They never mentioned that the cells could be diseased. We felt duped," Tracey says. The Long Island, New York, couple has since filed a lawsuit against the bank alleging false advertising and consumer fraud.
They aren't the only ones questioning the business practices of private cord-blood banks. Both the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Pediatrics (AAP) issued statements in the late 1990s opposing the use of for-profit banks -- and criticizing their marketing tactics. Instead, they recommended that parents donate cord blood to public banks, which make it available for free to anyone who needs it. Globally, other organizations have done the same. Italy and France have banned private cord-blood banking altogether.
"Raising a family is expensive enough," says Jeffrey Ecker, MD, director of obstetrical clinical research at Massachusetts General Hospital, in Boston, and a member of ACOG's ethics committee. "There's no reason for parents to take on this additional financial burden when there's little chance of a child ever using his own cord blood."
Is It Right for Your Family?
Once considered medical waste, the blood left in the umbilical cord after a baby's delivery is now known to be a rich source of stem cells similar to those in bone marrow. It's been used in transplants to treat more than 70 different diseases including leukemia, lymphoma, sickle-cell disease, and some metabolic disorders. Unlike with marrow, which is obtained through a painful medical procedure and replenished by the body, there's only one chance to collect this seemingly magical elixir: immediately after a baby's birth.
Since the first successful sibling-to-sibling cord-blood stem-cell transplant was performed in 1988 to treat a genetic disorder called Fanconi's anemia, more than 20 private banks have opened. And they seem to have the address of every expectant couple in America -- whose mailboxes bulge with brochures encouraging them to take advantage of this once-in-a-lifetime opportunity. "Cord-blood banking is like insurance to protect your family against unforeseeable events," says Stephen Grant, cofounder and senior vice president of Cord Blood Registry, a large California-based private bank. "You do it out of love and responsibility for your family. Sure, you hope you'll never have to use the blood, but if you do, it'll be there."
Not surprisingly, this emotional pitch is working -- especially because the seemingly unlimited potential of stem cells has dominated the news in recent years. From 2003 to 2004, for example, the number of couples opting to use a private bank increased by 55 percent to 271,000. The three biggest companies -- who have the majority of the approximately $250 million market -- are vying for business.
Like any insurance, cord-blood banking isn't cheap. Banks initially charge from $1,000 to $2,000 to collect and process the stem-cell units, which are stored for a family's exclusive use. When you factor in additional costs for shipping (about $150 for a medical courier), the doctor's collection fee (prices can range from $150 to $500), and annual storage fees averaging $100 per year for 18 years, parents can expect to pay up to $4,000 in expenses not covered by insurance.
But considering the average cost of a new car or top-of-the-line stroller these days, many expectant parents feel it's not an unreasonable price to pay to give their child the best chance in life. "Ultimately, my conscience wouldn't let me not do it," says Merilee Kern, of San Diego. "We could afford it, and the blood could someday save my daughter."
Certainly, there are plenty of doctors who have high hopes for stem-cell advances and advise patients to consider cord-blood banking. When private banks first started sending him informational packets, Jordan Perlow, MD, a maternal-fetal specialist in Phoenix, assumed they were just trying to profit from parents' anxieties. But after attending medical conferences and scrutinizing studies about developments in stem-cell therapies, Dr. Perlow now encourages his patients to privately bank if they can afford it because he's convinced that it might save their child's life or the life of another family member. "If private banking had been available when my children were born, I would have done it," he says.
There are no hard numbers on a child's risk of needing a stem-cell transplant: It's anywhere between one in 1,000 and one in 200,000, according to studies cited by ACOG and the AAP. But private banks' marketing materials often place the odds at one in 2,700 and note that these numbers don't factor in its potential future use for diabetes, Alzheimer's, Parkinson's disease, and spinal-cord injuries in adults. "Researchers are constantly discovering new treatments using stem cells," says Gerald Maass, executive vice president of corporate development for Cryo-Cell, a private bank in Clearwater, Florida. Another major bank's Web site claims incredible odds: "Should cord blood prove successful in treating heart disease, the lifetime probability of being diagnosed with a disease treatable by cord blood will increase from one in 100 to one in two."
What Banks Don't Tell Parents
While cord-blood companies herald the possible future treatments of many adult diseases with stem cells, they rarely mention a key issue. Researchers have greater hopes for the potential of embryonic stem cells, which are thought to have the ability to develop into many different types of cells. It is not known whether the stem cells in cord blood have that ability; until recently, it was thought that they (like those in bone marrow) could only regenerate blood and immune cells.
What's more, few cord-blood transplants have been given to adults because most units haven't contained enough stem cells to treat anyone weighing more than 90 pounds, says Joanne Kurtzberg, MD, program director of the division of pediatric blood and marrow transplantation at Duke University Medical Center. And since the procedure is relatively new, no one knows how many years the frozen units will remain viable.
In fact, the shocking truth is that the majority of all cord blood stored in private banks may be unusable. Approximately 75 percent of the units donated to public banks are discarded or used in research because they don't contain enough stem cells for transplants, says Mary Halet, manager of cord-blood operations for the Center for Cord Blood at the National Marrow Donor Program, a Minneapolis-based nonprofit organization that maintains the nation's largest public supply of cord blood. Yet private banks store every unit they collect, which means that you might pay to store blood that won't be usable if you need it years later.
And as Victor and Tracey Dones learned, a child's own cord blood can't always be used to treat him, even when he's young. "Childhood leukemia is one of the diseases private banks like to play up, but most kids with leukemia are cured with chemotherapy alone. If a transplant is needed, we wouldn't use a child's tainted cord blood," Dr. Kurtzberg says.
It would be possible for a healthy child's cord blood to be used to treat a sibling with leukemia, but the banks' literature doesn't spell out that distinction. In the last 10 years, almost all of the approximately 70 cord-blood transplants that have used privately stored blood were given to relatives with preexisting conditions, not to the donors themselves.
In fact, the AAP does encourage parents to keep their child's cord blood if a family member has already been diagnosed with a stem-cell-treatable disease. But a family won't have to foot the bill: The Children's Hospital Oakland Research Institute, in California, will bank a baby's cord blood for free if a family member needs it at the time of the baby's birth. Some private banks, such as Cord Blood Registry, Cryo-Cell, and ViaCord, have similar programs.
In 2007, the AAP issued a revised cord-blood-banking policy, that discourages private banks for families who aren't already facing a health crisis. "These banks prey on parents' fears of the unknown, and there's no scientific basis for a number of medical claims they make," says Bertram Lubin, MD, president and director of medical research for Children's Hospital Oakland Research Institute, and coauthor for the AAP's 2006 cord-blood-banking committee.
The Promise of Public Banking
Even if a sick child has a sibling donor, there's only a 25 percent chance that cord blood will be a perfect match -- and an equal chance it won't match at all. That's why public donations are so important. So far, many more stem-cell transplants have been done using cord blood stored in public banks. From 2000 to 2004, more than 2,200 unrelated transplants were done nationwide.
"One of the wonderful things about cord blood is that unlike bone marrow, you don't always need a perfect match in order for it to work," says Dr. Kurtzberg, who performed the first unrelated cord-blood transplant in the U.S. And it was a public donation that ultimately saved Anthony Dones. Within a week of starting a search, the National Cord Blood Program, a public bank operated by the New York Blood Center, found a "close enough" match. Had the now-3-year-old been forced to rely on a bone-marrow match, he might still be waiting.
Until now, however, it hasn't always been easy for couples to donate their baby's cord blood to a public bank. The 28 public banks currently in operation work with only about 100 hospitals in the U.S. (find the list at parentsguidetocordblood.com). If you don't deliver at one of these hospitals, you can contact either Cryobanks International or LifebankUSA, commercial organizations that store both private and public units. These banks pick up the tab for your donation (minus the physician's collection fee).
Complicating matters further, each public bank has its own registry, so transplant centers must search many different databases to find a match for a patient. Currently, a Caucasian patient has an 88 percent chance of finding a cord-blood match through a public-bank registry, and minorities have a 58 percent chance. (Collection hospitals tend to be in areas with higher rates of Caucasian births, and parents from certain ethnic groups are wary of donating for religious or cultural reasons.)
Fortunately, those odds should improve soon. In 2005, Congress passed the Stem Cell Therapeutic and Research Act, which provides $79 million in federal funding to create a centralized cord-blood registry much like the one that exists for bone marrow. The goal is to expand the existing inventory of 45,000 donated cord-blood units to 150,000.
Ironically, some private banks also hope to benefit from this new legislation. "We have the capabilities and capacity to collect and store donated as well as private units," says Cryo-Cell's Maass. In fact, because the bill recommends that pregnant women be informed of all of their cord-blood options, it's likely that donations to both public and private banks will increase.
Of course, this means that expectant parents will have one more choice to make about their child's health and future. "I certainly don't think parents should feel guilty if they don't privately bank their child's blood," Dr. Kurtzberg says. The best choice is the one that works for your family.
7 Smart Questions to Ask a Cord-Blood Bank
Obviously, price and a compelling Web site aren't the only factors to consider when choosing a bank. Be sure to do your homework before signing up.
- Is the facility accredited by the American Association of Blood Banks? This means its labs, banks, and procedures meet set standards.
- How long has the company been in business? At least five years is best.
- How many units does it store? Look for a bank that has thousands.
- How many successful transplants have been performed with its stored samples? Having at least one demonstrates that its process works, but two or three is better.
- Is the blood stored as a single unit or in several samples? Freezing in portions is preferred so the blood can be tested for potential transplant use without thawing -- and wasting -- the entire sample.
- Is the company private or publicly held? If it's a publicly traded company, you'll have the advantage of reviewing its financials. Many banks are part of larger biotech companies.
- Is the storage fee fixed or subject to increases? You want to know the total price tag up front.
Copyright ? 2006. Reprinted with permission from the April 2006 issue of Parents magazine. Updated 2010
All content here, including advice from doctors and other health professionals, should be considered as opinion only. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.