SACRAMENTO — When Anthony Portantino and his wife had their daughter Bella five years ago, they wanted to donate blood from the umbilical cord.
But their hospital was not one of the two in California that routinely collect cord blood for use in treatment of diseases such as leukemia.
"I had to do all the work," said Portantino. "I had to get the kit, I had to call the hospital. I had to see if the doctor was willing to harvest it.... I had to pack it in ice and I had to call the stem cell place to come pick it up off my porch packed in ice. I said to myself at the time ... 'Why aren't we making this more easy to do? Because this saves lives.' "
So on his first day as a state assemblyman in December, the Democrat and former filmmaker from La Canada Flintridge launched an effort to expand cord blood collection for public use in California. His proposals would create a pilot project at five California hospitals and convene an advisory council to study ways to boost public banking of cord blood.
Most umbilical cords from the 4 million babies born in the United States each year are discarded as medical waste. But cord blood transfusions have increasingly become an alternative to bone marrow transplants in treating leukemia, lymphoma and other disorders of the blood and immune system.
Like bone marrow, umbilical cord blood contains stem cells that can develop into blood-producing cells that in turn can replace the recipient's diseased cells.
"It's almost like a hermit crab looking for a home in this new shell that it finds," said Meghan Serwin Flanz, a government lawyer who was a neighbor of Portantino when her son Jordy fell ill with leukemia.
No bone marrow match could be found for Jordy, and he was near death at age 6 when he received roughly three tablespoons of donated cord blood from a New York collection center. That 1996 transfusion was the first such procedure performed for a pediatric cancer patient at UCLA Medical Center.
The new cells helped rebuild Jordy's ravaged immune system, his mother said, and today he is a healthy high school student in Virginia who aspires to be a filmmaker.
Because cord blood cells are less specialized than bone marrow cells, they don't have to be so closely matched between donor and recipient. And they carry less risk of rejection by the recipient's body.
Also, unlike the collection of stem cells from embryos, taking stem cells from cord blood involves no ethical controversy. An embryo must be destroyed for the harvest of stem cells, but an umbilical cord is easily drained after a baby has been born.
"The whole picture of stem cells is really flowering, and cord blood is an excellent source," said Dr. Robert Jones, president of the New York Blood Center, the nation's largest public cord blood bank. "Research is going to look at cord blood cells for other uses than bone marrow replacement."
Legislators across the country have pushed for more public banking of cord blood. In the last year, Virginia and Rhode Island passed laws creating nonprofit banks for use by their residents, and Arizona, Tennessee, Maryland and Illinois passed laws encouraging public collection of cord blood.
Last year, Gov. Arnold Schwarzenegger signed a bill ordering the California Department of Health Services to prepare a brochure for pregnant women on umbilical cord banking. But the new law is contingent upon private donations to pay for the brochure. So far, the sole pledge of $50,000 from a private cord blood banking company is not sufficient to carry out the law, state officials said.
Meanwhile, dozens of private banks have sprung up around the country, offering to store cord blood for a family's personal use at an initial cost of $1,000 to $2,000, plus $100 or more each year in storage fees. The companies say that with future medical breakthroughs, children's own cord blood may be used later to cure them of such diseases as Parkinson's, diabetes and Alzheimer's.
The American Academy of Pediatrics, which encourages public cord blood banking, advises doctors to discourage parents from private banking unless there is a sibling in the family who suffers from blood disease and might benefit from a transfusion from a close relative.
There is no scientific evidence, according to the academy, that one's own cord blood is superior to donated blood in treating disease, and it could contain the same defects that caused the disease.
A bigger, more diverse public bank of cord blood is needed, said Michael Boo, strategic development officer for the National Marrow Donor Program, a federally funded Minneapolis nonprofit group that maintains the world's largest registries of bone marrow donors and stored cord blood units.
There are more than 100,000 cord blood units in several public banks around the country, the biggest of them in New York, said Boo, but only about a third of those units are viable because many are too small or weren't properly screened.
Still, he said, it's not necessary to collect all the cord blood available.
"It's unclear how big of an inventory you need," said Boo. "It costs a lot of money to add units."
In 2005, Congress authorized $79 million for the collection of an additional 79,000 units by public cord blood banks, with a goal of banking 150,000 viable units. So far, $22 million of that has been appropriated, Boo said.
In California, only St. Joseph Hospital of Orange and Citrus Valley Medical Center in West Covina routinely collect cord blood for public banking.
Portantino said he hopes that someday California will have a public bank rich and diverse enough to serve the entire state, and donating cord blood becomes as commonplace as donating whole blood.
"We're throwing it away," he said, "and we have no public policy