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"What the field needs is what the government has done some of," Petz says, "and that's to subsidize cord-blood collections so that they are done efficiently and are done including minority collections, so we get well-balanced banks throughout the country."
Anthony Portantino, a freshman state assemblyman from Pasadena, reached this conclusion the hard way. Inspired by a neighbor whose leukemia was cured after a transplant, the lawmaker says he vowed that if he ever had another child, he would donate the cord blood. When his wife Ellen became pregnant with daughter Bella five years ago, Portantino set out to keep his promise.
Easier said than done. The politician says he struggled to find a bank that would take the blood for public research. Even after he found one, Portantino laments, "I had to do all the work. I had to call the doctor and get the kit from the blood bank and be in the delivery room and hand the bag to the doctor at the point of harvesting. He handed it back to me and I had to pack it on ice and arrange for the shipping." Although Portantino's experience was particularly bad, who would want to deal with such a hassle when your partner is giving birth?
Small wonder that the vast majority of cord blood from the state's 550,000 annual births goes in the garbage, even though an estimated fifteen thousand to fifty thousand Californians could benefit from a transplant. "This is really stupid," Portantino recalls thinking. "We have the ability to cure seventy diseases and we throw this wonderful blood product away!" Although he says people should be able to use a private bank if they want, Portantino points out that the high price tag favors the affluent and, as he puts it, the "non-ethnic."
Portantino's very first bill, introduced on his first day in office last December, calls for five donation points to be established across the state by July 2009 with the goal of collecting 150,000 cord-blood units from mothers of every ethnic background. So far AB 34 has passed its early hearings with flying colors. It goes next to the Senate appropriations committee.
The middle ground in the public-versus-private debate lies in Oakland. In 1998, Children's Hospital Oakland Research Institute launched the world's first nonprofit program to bank, free of charge, cord blood from siblings of kids who need transplants. Although a public bank, its stocks, like those of the commercial banks, are available only to the donor families. A few years after its launch, with the help of a tiny blue-eyed baby, it rescued Matthew Damm from a lifetime of IV tubes and needles.
Matthew was born with thalassemia, a disorder in which the body cannot produce hemoglobin, the protein that carries oxygen through the bloodstream. He needed monthly all-day blood transfusions, and all-night injections of medicine five times a week. "Needless to say, we wanted this boy cured," says his mom, Dawn. "We didn't want him to have all these complications and have to live his whole life this way."
The Damms had saved Matthew's cord blood with the private bank Cryo-Cell, but it was of no use in his case the treatment for thalassemia is a marrow or cord-blood transplant from a disease-free sibling. Matthew was an only child, however. Dawn and her husband Gary, both carriers of the gene for thalassemia, hoped to have another baby, but knew they risked ending up with two sick kids. Although some couples might have turned to in vitro fertilization, Dawn says, "We just put it in God's hands."
Four years later, she became pregnant with a daughter, Hannah. Although the family lives near San Diego, they'd been taking Matthew to Children's once a year because of its stellar reputation for treating thalassemia. The Oakland doctors suggested they bank Hannah's cord blood through the sibling program. If she was negative for thalassemia, and a match for her brother, they could try a transplant that would essentially replace the boy's blood with Hannah's. Matthew would be given intense chemotherapy to wipe out his own bone marrow, and his sister's cord blood would be transfused into his body. If all went well, her stem cells would find their way into his bones, where they would produce healthy blood. It would be brutal, but it might cure him.
Sure enough, Hannah was a match. "We were thrilled, but also really scared," Dawn recalls. "That meant we had to do it."
Not only were they worried for their son, but the Damms knew they were using their one chance with Hannah's blood. "It was at the back of our minds 'Now she doesn't have any cord blood if she should need it,'" Dawn says. Ultimately, she says, they made a decision: "This is what Matthew needs right now. We've been praying for a cure for him for five years and here comes an opportunity."
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