Whether to Save Cord Blood Can Be Puzzle for Parents

By Carla McClain, The Arizona Daily Star, Tucson

Feb. 18–For eons, humans have been fascinated and mystified by the cord that ties a mother to her unborn baby.

Believing it vital to ward off evil spirits and protect the growing child, ancient societies often wrapped, buried and tended to the blood-filled umbilical cord with great care after birth, hoping to preserve its power.

Once medical science replaced such spiritual myths, we simply threw it away, assuming it useless after the baby was born and breathing on its own.

But today, in an unexpected return to our ancient ways, we know the umbilical cord — and the rich blood it carries — can be crucial to the well-being of a growing child, and once again are preserving this mysterious organ.

For that reason, every pregnant woman in Arizona now must, by law, be informed of the option to do just that — to save and store her baby’s potentially lifesaving umbilical-cord blood instead of discarding it.

But perhaps surprisingly, most will be advised not to do it, given the high cost and the rare chance their children will ever need it.

The law — which went into effect Jan. 1 — is meant to help sort through the confusion and controversy that surrounds this new medical trend, which can pose a serious moral and financial dilemma for many new parents. Arizona is one of 10 states with such a law, though 12 more are considering it.

What transformed the umbilical cord from afterbirth waste to valuable resource was the discovery in recent decades that the blood stem cells it carries can be used to treat, even cure, many blood cancers and anemias — most notably childhood leukemia. It also is proving useful against many genetic and immune disorders, and is showing promise even for regenerating vital tissues and organs.

As a result, a small industry of cord-blood banks has emerged, encouraging parents to store their newborns’ umbilical cords as “biological insurance” against future illnesses that may strike the family.

But they charge hefty fees for it, making it an option mostly for those who can afford it and frustrating many who cannot.

As home to the world’s first and largest private cord-blood bank — known as Cord Blood Registry — Tucson has become a major player in this fledgling industry, which is aggressively marketing the idea, making a profit on it and sometimes earning criticism for it.

“Private cord-blood banks target parents at an emotionally vulnerable time,” states the American Academy of Pediatrics, the nation’s leading authority on childhood medical issues.

Noting the slim chance children will ever need their own cord blood — from 1 in 1,000 to 1 in 200,000 — the academy concludes: “Storing cord blood at private banks for later personal or family use as a general ‘insurance policy’ is discouraged.”

The academy warns parents about “unsubstantiated” claims some for-profit banks make about illnesses that cord blood can treat or cure. Although stem-cell technology is extremely promising for many disorders, much of it remains experimental and in the earliest stages of research.

However, the pediatrics academy makes two major exceptions to this general advice:

–If a child in the family suffers from a medical disorder treatable by a cord-blood transplant, then saving a younger sibling’s cord blood at a private, for-profit bank (the only banks that do this) is encouraged.

–Donating a newborn’s cord blood to a public, nonprofit cord-blood bank — for use by anyone in the world who may need it — is strongly recommended. This costs the donor family nothing.

Tucsonans became familiar with this practice during the long fight for life waged by the city’s most famous childhood leukemia patient, Carlos Valencia. Doctors attempted four transplants using donated cord blood to try to save his life.

Although those transplants failed and Carlos died in 2004, studies now show that cord blood can save or prolong the lives of children and adults suffering from leukemia. It’s proven easier to obtain, easier to match and less prone to infection than donated bone marrow, which has been traditionally used in these transplants.

At University Medical Center — where Carlos was treated and transplants are performed — the staff is aggressive about asking new mothers to donate their umbilical cords to public banks, but admittedly less so about private cord-banking.

“We do collect cord blood for public banks. We ask the mothers about it in labor and delivery, and about 80 percent go for it,” said Dr. Kathryn Reed, head of obstetrics and gynecology.

“Most women are quite generous about doing this.”

But Reed hasn’t been encouraging parents to pay the high fees for private storage of their baby’s cord blood for their personal use. And she questions the state’s recent move to insert the law in this issue.

“This is the law now, but it is not a guideline for me on whether this is a medically necessary conversation to have,” she said.

Following the law, UMC inserts the pamphlet produced by the state health department explaining umbilical-cord-blood banking options in the information packet given to all new mothers at UMC. The pamphlets have been distributed to hospitals, doctors’ offices and clinics — to anyone caring for a pregnant woman — statewide.

“As a doctor, I do like the idea of public cord-blood banking — I think that’s worthwhile, for the public good,” she said. “But I don’t like the prices for private cord-banking. If it were $5 to collect it, and $5 a year to store it, then I’d say yes, it’s worth it.

“But at the hardship prices they’re charging now, most families just can’t afford it. It’s a lot to ask of a family, when they don’t know if they’ll ever be able to use it.”

At UMC, only 1 percent to 2 percent of birthing mothers pay to bank their baby’s cord blood for potential personal use, she said. Nationwide, some 3 percent to 5 percent do.

Tucson’s private, for-profit cord-blood bank — Cord Blood Registry — charges an initial $1,700 fee to process and test a newborn’s cord blood, then $100 a year to freeze and store it. Some 170,000 units are in storage there now.

But Cord Blood Registry waives that fee for any family with a stricken child who may need a cord-blood transplant — as it just did for Dionne and Walter Eaddy Jr.

After the birth of their son, Walter III, 10 days ago, the Eaddys immediately sent his umbilical cord across town to CBR, where it may one day save his older sister, Dolores, now 3.

Born with sickle cell anemia — an inherited blood disorder that mostly affects blacks — Dolores faces a high risk of stroke, infection, chronic pain and premature death as she grows up.

The only known possible cure is a bone-marrow or cord-blood transplant. Walter III — born free of this disease — now is being tested as a cord-blood donor for her. The likelihood of a sibling cord-blood match is very high.

“When we found out we could do this for free, that was amazing for us,” Walter Eaddy said.

“We needed to do this for Dolores, so we’d have tried to find the money one way or other, but I’m not sure how. We are cautiously optimistic — this seems to be working out. There is an answer for her now if she starts to get very sick.”

Cord Blood Registry has waived fees for about 2,000 families in this kind of situation, said the bank’s founder and scientific director, David Harris. Harris was the first parent in the United States to bank his child’s cord blood, when Cord Blood Registry opened here in 1992. Since then, private cord-blood banking has grown steadily, all but exploding in recent years at Cord Blood Registry, with 50 to 100 percent yearly increases, he said.

“There has been a tremendous increase in interest in it, with the public awareness of cord-blood transplants and stem-cell technology,” he said, noting that new units are coming in at the rate of 200 a day now.

Harris disputes the the American Academy of Pediatrics’ range of how rarely cord blood is needed, saying its figures show there is a 1-in-1,000 chance a family will use it.

Since 1992, cord blood has been pulled out of Cord Blood Registry storage for 46 medical procedures — half of them to treat cancers, mostly leukemias, and the other half for genetic disorders such as sickle cell or aplastic anemia. A handful — about six — have been used in experimental treatments for cerebral palsy.

“But the real issue is that the best outcomes occur when you use related cord blood,” Harris said, citing studies that show an 85 percent to 90 percent survival rate in leukemia patients who receive closely matched cord blood from a related donor, compared with a 35 percent to 40 percent survival for those getting unrelated cord blood.

“When a life-threatening disease like this strikes,” he said, “you want the best stem sells available.”

For more information about umbilical-cord-blood banking:

–A Parent’s Guide to Cord Blood Banks: www.parentsguidecordblood.com

–The March of Dimes: www.marchofdimes.com

–Arizona Department of Health Services: 1-602-364-1400 or www.azdhs.gov/phs/owch

Public cord-blood banks:

There are only two public cord-blood banks that accept cord-blood donations from babies born in Arizona. They are:

–Cryobanks International: 1-800-869-8608 or www.cryo-intl.com

–LifeBankUSA: 1-877-543-3226 or www.lifebankusa.com

Private cord-blood banks:

There are several private cord-blood banks for families who wish to save their baby’s cord blood for potential future use. The three largest are:

–Cord Blood Registry (in Tucson): 1-800-588-6377 or www.cordblood.com

–ViaCell Inc.: 1-866-842-2355 or www.viacellinc.com

–Cryo-Cell International: 1-800-786-7235 or www.cryo-cell.com

“If it were $5 to collect it, and $5 a year to store it, then I’d say yes, it’s worth it. But at the hardship prices they’re charging now, most families just can’t afford it.”

Dr. Kathryn Reed, head of obstetrics and gynecology at UMC

–Contact reporter Carla McClain at 806-7754 or at cmcclain@azstarnet.com.

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Copyright (c) 2007, The Arizona Daily Star, Tucson

Distributed by McClatchy-Tribune Business News.

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