Umbilical-cord stem cells valuable, but usually wasted

At 2:11 p.m. on July 23, Michael Kuttler drew his first breath and belted out an exultant scream. Seconds later, he participated in his first act of altruism - trying to save a stranger's life.

His afterbirth was placed in a bin and handed to a woman who rushed down the hall in Lankenau Medical Center to a utility room. Working quickly, she swaddled the placenta in a cone of paper pads, pulled the rubbery umbilical cord through the bottom, then, using a syringe, plastic tubing, and gravity, spent the next 20 minutes collecting biological gold.

Stem cells from cord blood are an increasingly vital public-health resource with the potential to treat or cure scores of life-threatening diseases. Yet every day in delivery rooms, nearly all cord blood is thrown away.

The decision to donate her baby's cord blood was "a no-brainer," said Michael's mother, Megan Kuttler of West Conshohocken. "If it could help somebody else, of course I wanted to."

Most expectant parents in the Philadelphia region do not have that opportunity.

"Women want to donate, but we can't afford to collect it," said Dennis Todd, CEO at Community Blood Services in Montvale, N.J. The agency - one of only 21 public cord-blood banks in the nation that provide units for transplants - receives an average of five calls or e-mails a week from expectant parents asking how they can contribute their baby's cord blood for the greater good.

The answer is almost always, "Sorry, but you can't."

"It's tough to do a good deed," said Frances Verter, director of the nonprofit Parent's Guide to Cord Blood Foundation.

Unless a woman delivers at one of the relatively few hospitals affiliated with a public cord-blood bank, her options are limited.

The Carolinas Cord Blood Bank, part of Duke University, is one of the few public banks that will send collection kits to qualified donors.

Only the most motivated women donate this way.

To do it, the mother has to fill out forms, request a kit, and ask the person who delivers her baby to take an online certification course and collect six vials of maternal blood as well as the baby's cord blood. Then the mother has to ship the package within 48 hours to the lab.

What is surprising is that so many are willing to do it. Duke can't fill all the requests it receives.

The most common alternatives are private banks, which reserve cord blood for the exclusive use of the family who donated it. They charge about $2,000 at birth and $100 or more a year for storage.

In eastern Pennsylvania, two hospitals collect cord blood for public banks. Lankenau started its program four years ago. Temple University Hospital began in May. Combined, the two deliver about 6,000 babies a year.

This year, Community Blood Services tried, but failed, to establish an alliance with the University of Pennsylvania Health System. About 9,000 babies are delivered annually at the system's two main hospitals in the city.

"As the health system with the largest number of births in Philadelphia, we have enthusiastically explored opportunities to partner with organizations working to expand donations to public cord blood banks," the hospital said in a statement. "Unfortunately, we have not identified a partner."

Cord blood is rich in stem cells, which are used for transplants in patients with leukemia, sickle cell anemia, and dozens of rare blood diseases. Researchers are optimistic these cells might also be used to treat heart disease, diabetes, cerebral palsy, autism, and spinal cord damage.

Expectant parents often receive brochures from private cord-blood banks offering a once-in-a-lifetime opportunity to save their babies from awful diseases.

Most doctors and major medical groups advise parents to be wary of overblown promises. Except in rare cases, they say, private cord-blood banking is an expensive, long-shot gamble.

"There are some grains of truth" in the marketing, said William Shearer, a professor at Baylor College of Medicine and a lead author of the American Academy of Pediatrics' forthcoming revised position paper on cord-blood banking.

Several weeks ago, for example, researchers at Duke University began a large clinical trial to see whether cord-blood cells can be used to treat autism.

But until peer-reviewed research provides more evidence, parents should be cautious.

Furthermore, Shearer said, at least for now, private cord-blood banks are not held to the same standards as public banks, which are more strictly regulated.

"There are good and bad banks," said John Wagner, director of blood and marrow transplant at the University of Minnesota. Like Shearer, Wagner believes that private cord-blood banks should be better regulated. But he is less skeptical than he once was about the private option.

"Five years ago, it was more black-and-white," Wagner said. ". . . Today, I'm waffling because more recent research shows greater potential for treating a wider variety of diseases."

Nearly all the blood stored in public banks is used for transplantation. The banks are open to any patient in need. Like any public blood bank, they screen donors for drugs and infections. Those who are accepted, like Megan Kuttler, still have no guarantees. All units have to be large enough for an adult transplant, and depending on how carefully the umbilical cord is cut, the size of the placenta and the luck of the draw, there might not be enough blood volume to reach the minimum threshold of 1.1 billion nucleated cells.

Reputable private banks notify parents if the collection is small. But Wagner warns that "most parents aren't in a position to judge what is sufficient. Saving less than an ounce or two markedly limits its future usefulness."

The Cord Blood Registry, one of the largest private cord-blood banks, calls parents if the collection results in fewer than 100 million nucleated cells. "Volume is tricky," said Heather Brown, the registry's vice president of scientific and medical affairs. But once parents have made up their minds to store cord blood, they are reluctant to let go of the smallest bit of hope. "About 85 percent decide to still store," Brown said.

Last year, of the 500,000 cord-blood units stored at its Tucson, Ariz., facility, 50 were released for use by clients. Of those 50, 45 were used for children to enroll in clinical trials. Only five were used for transplants, nearly all for the donors' siblings.

Wagner, a pioneer in using cord-blood stem cells for transplants, has discovered that all patients who receive these cells, which come from a baby's immature immune system, have a lower risk of complications such as graft versus host disease, a dangerous immune reaction.

To find compatible cells for a bone marrow transplant, 10 sites on the genes from an adult donor must match, compared with only six in cord blood.

Public donations are especially needed for African American, minority, and mixed-race patients, who are less likely to match an adult donor.

Some federal money is available to public banks, but they rely mostly on fees - up to $40,000 - collected from insurers and hospitals when a unit is used.

But that income is not enough to allow public banks to accommodate all the altruistic parents who would like to donate their baby's cord blood.

For every 10 units the bank collects and processes - at $1,200 to $3,000 each - only one or two will pass muster for storage.

"In theory, every major hospital should have this as an offering," said Carolyn Kohn of Wilmington. "It's just a matter of dollars."

Her son Brady's aplastic anemia was cured with cord blood, although he later died of an infection. In 2002, she started a foundation to educate the public about cord blood and fund research. "We're in the infancy of the public understanding," she said.

At Abington Memorial Hospital, which is not affiliated with a public bank, fewer women are storing in private banks, said senior surgeon Robert Michaelson. "If I do two a month, that's a lot."

Michaelson said he delivers about 100 babies a month and wishes he could save the cord blood. "We should bank everyone's blood and worry about what we do with it later."

Others have suggested storing every child's cord blood for the critical first year. But far more funding would be needed.

"If we stop spending billions on armaments maybe we can allocate more money for storing more units in public cord blood banks," said Naynesh R. Kamani, division director of the American Association of Blood Banks.

Temple Hospital received public and private grants to start its service. "Right now, most commonly, we ask mothers while they are in labor," said Dimitrios Mastrogiannis, director of maternal fetal medicine. Nearly all have said yes. "That tells you how important people feel this is."

Most experts believe the money will materialize once the research yields more results. That could happen within the next few years.

In recent studies, still unpublished, Wagner said he has found evidence that regulatory T-cells from cord blood can prevent a dangerous immune response in organ-transplant recipients. So it may be possible to use them to treat autoimmune diseases such as Type 1 diabetes, psoriasis, and rheumatoid arthritis.

Two years ago, when the Kuttlers were expecting their first baby, they considered private blood banking and decided the benefits were not worth the cost.

They switched to Lankenau for their second baby. A week before the C-section, their doctor asked whether they wanted to donate the cord blood to a public bank. "I had no idea it was an option," Matthew Kuttler said.

If all went well, the baby's blood would be shipped to the New Jersey lab, to be cryogenically preserved at 190 degrees below zero centigrade. Two weeks later, if no infection were found, the frozen blood would be put into storage until it was needed.

To qualify for donation, 144 grams were needed. Michael Kuttler was able to give only 100.

"That's a shame," his mother said, pulling her son close. Her husband kissed the baby's fingers. Down the hall, the baby's small bag of blood was dropped into a red trash can marked "biomedical waste."

BY THE NUMBERS

60 ml Average size of private cord blood unit

89 ml Average size of public cord blood unit

1.15 million Number of cord blood units stored in private U.S. banks

200,000 Number of cord blood units stored in public U.S. banks

3 Hospitals in Philadelphia region that offer public cord blood banking: Temple University Hospital, Lankenau Medical Center in Wynnewood, Christiana Hospital in Wilmington.

Editors Note: This list was updated to reflect that St. Francis Hospital in Wilmington no longer offers public cord blood banking while Christiana Hospital does.

Source: Parents' Guide to Cord Blood, Dr. John Wagner

Check with the American Association of Blood Banks, NetCord/Foundation for Accreditation of Cell Therapy or the Foundation for the Accreditation of Cellular Therapy to see if the bank is accredited. The bank's website may not be accurate.

Make sure you are storing something of sufficient quantity. Two ounces is usually considered the minimum. If you are going to spend the money, it might as well be for a useful product.

Check to see if you can opt out if the collection is too small. Banks may still charge about $200 for collection and shipping.

Source: Parents' Guide to Cord Blood, Dr. John Wagner EndText