Four-year-old Devan Tatlow’s struggle with leukemia has caused quite a stir on the Internet, prompting celebs like Paris Hilton and Kim Kardashian to encourage people to donate their bone marrow. Dr. Jon LaPook talks with Devan’s family about their search for a match.
Umbilical Cord Blood: Save It and Save Lives
Imagine throwing a lifesaving treatment in the garbage. That’s exactly what happens in the United States over ten thousand times a day because we do not routinely offer to collect precious umbilical cord blood at the time of birth. Thousands of Americans — many of them children — needlessly die annually because they cannot find either a bone marrow or umbilical cord blood match to help treat conditions like lymphoma and leukemia. Yet umbilical blood is discarded as medical waste in the vast majority of the more than four million births occurring each year.
Bone marrow and umbilical cord blood both contain stem cells that can replace diseased bone marrow. Umbilical cord blood can be collected painlessly and with no risk in a few minutes at the time of birth. I witnessed its value first-hand in a segment I did for the CBS Evening News about a 4-year-old boy, Devan Tatlow, whose parents recently launched a desperate search for a bone marrow donor to treat his leukemia. There was no adequate genetic match for Devan among the 14 million potential bone marrow donors in registries around the world. But a near-match was found among only 175,000 cord blood units that reside in public blood banks in the United States. Though finding the match doesn’t guarantee a cure for Devan, his doctors say he now has a good chance at a successful transplant later this summer.
Devan’s situation perfectly illustrates the current state of the art. Before cord blood use began in the 1990′s, taking bone marrow from a healthy donor was the only way to replace diseased blood cells. Over the years, registries such as the one run in the U.S. by the National Marrow Donor Program have helped save thousands of lives by matching donors willing to give their bone marrow cells to patients in need. But as Devan’s parents discovered, finding a bone marrow match can be very difficult because the genetic match has to be very close. Fortunately for Devan and many others, umbilical cord blood matches don’t have to be quite as close as bone marrow matches. But many patients are not lucky enough to find a match in either the bone marrow or umbilical cord blood registry.
According to Dr. Joanne Kurtzberg, Director of the Blood and Marrow Transplant Program at Duke University Medical Center, the public cord blood supply is way too small. She and other experts are looking to increase U.S. stores to 400,000 to 500,000 units — about 2 to 3 times the current level. ”It would be fantastic if hospitals were equipped and staffed to collect cord blood for public donations if mothers wanted to donate, but right now that’s not the situation in the United States.”
Donating cord blood to a public cord blood bank costs a family nothing. But because of lack of funding, only 170 of the nation’s 5,815 hospitals — just three percent — are set up to collect it. In 2005, government legislation created support for National Cord Blood Inventory (NCBI) cord blood banks.
However, Dr. Kurtzberg says the effort has been underfunded. She was in Washington last month lobbying members of Congress to appropriate authorize the appropriation of $30 million annually for the next five years to support public cord banking. From hospital bed to bank, it costs about $2,400 to collect, transport, freeze, and store each cord blood unit. Private cord blood banking is available (and costly) but is only for use within a family and therefore doesn’t help the vast majority of people in need. Because of collection standards, cord blood collected for private use cannot subsequently be donated for public use. So it can’t help patients like Devan.
The bottom line is that we need to increase the supply both of potential bone marrow donors and of umbilical cord blood stored in public banks. Becoming a potential bone marrow donor could not be easier. You simply swab the inside of your cheek or lip for 20 to 30 seconds with a small, padded stick to collect cells for genetic analysis, send the specimen off to a lab, and you’re done. If a match is subsequently found, you can always change your mind and decide not to be a donor. But giving bone marrow cells involves only minimal discomfort — whether by having a small amount of bone marrow withdrawn from your hip bone under general anesthesia or by having blood taken from veins in your arms after you take 3 to 4 days of injections to bring cells from your bone marrow into your blood.
Because it’s not routinely offered at the time of birth, donating umbilical cord blood to a public bank requires some initiative. But if umbilical cord blood were donated in only five percent of all births, the goal of 500,000 units would be reached within two years. And since the blood can be frozen and stored for at least twenty years, we would soon have a plentiful and growing supply that would provide a match for nearly everybody.
Adults wanting to volunteer as bone marrow donors can go to their local American Red Cross or blood center, or can enroll online at the “Be The Match” registry of the National Marrow Donor Program. Just go to www.marrow.org and click “Join the Registry.”
Mothers who would like to donate their baby’s cord blood click here: “Donate Cord Blood.” Dr. Kurtzberg told me “they can also talk with their obstetrician or midwife about whether their local hospital is a collection site for a public bank. Finally, if their hospital is not a collection site (the case in most instances), they can contact Duke, MD Anderson, or South Texas Blood & Tissue Center and donate through a kit program public cord blood donation that is being piloted through the National Marrow Donor Program.”