By Patricia Guthrie
The Atlanta Journal-Constitution
June 12, 2003

Keone Penn: World’s First Experimental Unrelated Cord Blood Transplant Recipient Celebrates five-year Anniversary Free of Sickle Cell Anemia

Keone Penn turned 17 this week --- a milestone many doctors gave him slim odds of ever reaching. Five years ago, they were out of options in their fight against the unrelenting fatal advance of sickle cell disease that was attacking the small boy's blood and body.

Today, the Shiloh High School senior-to-be is scheduled to testify before Congress about how the birth of a baby --- one he never knew, never met and probably never will --- is responsible for his getting a second chance at life in the form of placenta umbilical cord blood.

"I'm here, I'm talking, I'm breathing," he said in a Wednesday telephone interview, after peering at diamonds and dinosaurs at the National Museum of Natural History in Washington.

"I'm doing good and I want to help out in any way I can to help save someone else's life," he said.

Five years ago, Penn underwent the world's first experimental unrelated cord blood transplant to treat sickle cell disease. The procedure was performed at Children's Healthcare of Atlanta; the cord blood was collected, screened and stored at the New York Blood Center, the nation's largest research center using the breakthrough therapy.

Penn, who lives in Snellville, and two others saved by cord blood transplants will address the U.S. Senate Subcommittee on Science, Technology and Space. A bill to establish a $30 million federally funded National Cord Blood Program linked to five or six academic and regional medical centers is expected to be introduced later this summer.

A newborn's umbilical cord blood is pure and rich in stem cells --- the "medical miracle" cells that are the building blocks of blood, organs, tissue and the immune system.

Many consider cord blood to be a more promising and less controversial choice for treating certain life-threatening diseases and disorders than the use of human embryonic stem cells, which are mired in religious, political and moral quagmires.

"As soon as people understand that cord blood does not involve ethical or religious considerations of any kind, that it has nothing to do with embryonic stem cells of any kind, there really should be no reason not to support it," said Dr. Pablo Rubinstein, director of the New York Blood Center.

Scientists also point out that cord blood therapy has had a decade's worth of patients and data to prove itself, unlike embryonic stem cell research, which has been employed primarily on laboratory animals.

And doctors are discovering more and more uses for cord blood, including the treatment of rare metabolic and genetic disorders.

While mostly children have been treated with the therapy, adults with leukemia have also been cured with the infant stem cells.

Cord blood could be lifesaving for thousands of people who need a bone marrow transplant but are unable to find a related or matching donor, said Dr. Joanne Kurtzberg, director of the Carolinas Cord Blood Bank and Duke University's Pediatric Stem Cell Transplant program.

"It's important because 75 percent of people who need a bone marrow transplant won't have a match through their family," Kurtzberg explained. "About 20 percent will find a match in the national bone marrow registry. Cord blood can provide donors for the majority of people who can't find a match."

African-Americans can be particularly helped by cord blood because they have even slimmer odds of finding a bone marrow match, she said.

Normally, the placenta and its stem-cell-rich blood is discarded after childbirth. Some women are opting to have cord blood saved by commercial companies that store it for a fee.

The blood then could be used years later by the child or other family members if medical problems surfaced.

But women wanting to donate for the "greater good" have had few places to turn, said Kurtzberg.

At Duke University Medical Center, pregnant women are asked if they would like to donate their placenta blood for research or possible treatment, with the understanding their identify will never be revealed.

"Most women are very happy to give the blood once they know it could potentially save a life," said Kurtzberg. She will appear at the Senate hearing today, along with Rubinstein