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Cord blood donations a rarity in fertile, charitable Utah

It put leukemia in remission for Shannon Johnson, of Syracuse, but storage costs and supply uncertainties have slowed growth of an important tool in fighting blood-borne diseases.

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Fourteen-year-old Shannon Johnson of Syracuse was among the lucky ones.

Diagnosed with leukemia in February 2008 and requiring a stem cell transplant, she was unable to find a suitable bone marrow donor but found a cord blood match through the nonprofit.

At a glance

Treating disease with stem cells

Cell therapy

Cell therapies involve transplanting human cells to replace or repair damaged or diseased blood, tissue or organs. Bone marrow transplants of hematopoietic (blood-forming) stem cells are the most common.

How does it work?

Hematopoietic stem cells can form mature blood cells, such as red blood cells (which carry oxygen), platelets (to stop bleeding) and white blood cells (to fight infection). In addition to treating cancer and other blood diseases, they are being tested for use with autoimmune, genetic and a host of other disorders.

Why cord blood?

There are three sources of hematopoietic stem cells: bone marrow, peripheral blood donation and umbilical cords. Cord blood is a valuable alternative for patients in urgent need of a transplant because samples are banked, blood-typed and easily searchable, and there’s evidence that they are less prone to rejection from the host.

How to choose a private cord blood bank

» Talk to your doctor about options early in your pregnancy.

» The American Association of Blood Banks and many doctors urge parents to use accredited banks.

» Find out if your bank operates in a state that licenses them (California, Maryland, New Jersey and New York).

» Ask about storage methods, viability of blood samples compared with other banks and financial stability.

Other questions to ask:

» What tests does the lab perform on maternal blood, for infectious disease markers and contamination?

» Does the lab have a quarantine tank for samples that might transmit disease?

» Does the lab inform parents, before storage, if the collection is too small for transplant and give them an option to not store it?

» Does the lab offer a refund if the collection has problems?

» What is the geographic location of the storage site (is it vulnerable to hurricanes or earthquakes)?

» What types of security and backup power systems are in place?

» Are samples processed within a certain time frame and how are they shipped?

Sources: Parent’s Guide to Cord Blood Foundation and American Association of Blood Banks

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The therapy worked. The busy, service-driven teen has been in remission for four years and will travel to Washington, D.C., next week to participate in a cord blood donation awareness event.

Her mom, Vickie Johnson, acknowledges it’s "hard to say" whether she would have considered paying to privately store her kids’ cord blood.

"I never thought my child would get cancer, not in a million years," she said. "But I definitely would have donated if I’d been given the option."

The challenge of donating » In Utah, however, donation options are limited.

"It’s been a year since I’ve done a cord blood donation," said Jan Byrne, an associate professor of obstetrics and gynecology at the U. "When we had a cord bank, we had a very active collection service. It was easier. Nowadays it’s kind of a pain."

Women who want to donate must use private companies, and it’s up to them to research the company and order the collection kit, said Byrne. "We collect the cord blood [free of charge] and give it back to the family who is responsible for shipping it."

There’s no national shortage of cord blood with about 195,000 units in the national public inventory, according to Be The Match.

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But Michael Boo, the organization’s chief strategy officer, said with 450,000 good quality units "we could increase the likelihood of providing a better match for virtually all Americans."

Boo would like to see more public collection sites open, but welcomes private banks as an alternative.

Of the 4 million births each year in America, private banks collect from about 5 percent to 6 percent, he said. "We don’t see them as competition."

But, he acknowledges, there’s more "variability" in the quality of private banks with "some very good banks and not-so-good banks."

Capturing Utah’s cord blood » In five years, the number of successful cord blood transplants nationally has tripled, a trend that’s likely to continue as new medical applications surface and private banks surge to meet demand.

Spencer welcomes scrutiny of the booming, multibillion-dollar global industry by regulators and consumers.

"There’s a lot going on and it seems to have escalated in recent months," said Spencer, who started Utah Cord Bank nine years ago. "The first cord blood we processed as my son’s. We started doing it because we thought methods being used were too expensive and not as good as they could be."

The for-profit company is not accredited by the American Association of Blood Banks (AABB), which sets industry standards, but Spencer said federal inspectors have visited its facilities three times and haven’t had concerns.

It has survived as a price leader and by carving out a niche as "the lab’s lab," processing and storing samples for its large, international competitors, he said. Spencer has learned over time which companies to avoid.

"Some brokers will collect lifetime storage fees from clients, but won’t pass that onto the lab that does the storage. Then if they go out of business, that leaves us with unfunded samples," he said, noting his bank stores them anyway.

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