WASHINGTON – Keone Penn and Steven Sprague appear to have little in common. Penn is a diminutive,soft-spoken 18-year-old with a bright smile,while Sprague,57,has a large frame,a commanding presence and a bald head.
Both of them,however,appeared at a Capitol Hill press conference Monday to urge Congress to support the Cord Blood Stem Cell Act,which would establish a national program for public umbilical cord blood banking.
In recent years,stem cells in umbilical cord blood have been proven to be a viable alternative to bone marrow transplants as a treatment for a variety of debilitating and fatal diseases. In 1998,cord blood stem cell transplants cured Penn's sickle cell disease and Sprague's leukemia.
“Believe me,as a teenager,being in the hospital more times than you can count is not a way to live your life,” said Penn,a recent high school graduate from Atlanta. “Stem cells saved my life.”
The bipartisan bill,sponsored by Sen. Orrin Hatch,R-Utah,and Rep. Christopher Smith,D-N.J.,allots $15 million to establish a national network of cord blood stem cell banks and a registry of all available donated units. The goal of 150,000 units would ensure that 90 percent of patients needing a transplant would find a suitable match.
About 1,300 cord blood stem cell transplants have been performed in the United States.
Funding would also go toward educating the public and doctors,said Robert Jones,president of the New York Blood Center,which is also urging the Food and Drug Administration to license cord blood treatment and set standards for storage.
Legislation on stem-cell research has been a controversial topic for Congress in the past few years. But the vast majority of the debate has focused on embryonic stem cells, which require the destruction of a human embryo. Cord blood stem cells,however,are found in the umbilical cord and placenta when a baby is born and are typically discarded. While the use of embryonic stem cells in treatment is still many years away,cord blood stem cells have already been used to treat at least 70 diseases and conditions,such as Hodgkin's disease,leukemia and sickle cell disease.
“Cord blood is not research,” said Sprague,of Staten Island,N.Y. “It is not dreams,or wishful thinking. Cord blood has been proven to work in patients for many years,seven years ago for me. That's why it is so urgent that this particular legislation gets passed quickly.”
The bill was first introduced in 2003,and Congress asked the Institute of Medicine of the National Academies to develop recommendations to establish a national cord blood bank network. The report will be issued April 14.
“I intend to fully review and carefully review the institute's recommendations,and I want to make sure these recommendations are properly reflected in our legislation,” Hatch said.
Cord blood stem cell transplants can be made with a less-than-perfect match,which makes them an exciting alternative for patients who cannot find a perfect bone marrow donor,said Dr. Pablo Rubenstein,director of the National Cord Blood Program at the New York Blood Center. Moreover,cord blood can be stored frozen for years,while a bone marrow recipient needs a live donor.
Sen. Christopher Dodd,D-Conn.,one of four Senate co-sponsors,stressed that bone marrow will not be replaced as a treatment.
“The bone marrow approach is still a very good approach,” he said. “This is complement of bone marrow,and we're expanding our horizons as a result of this effort.”
Approximately 65,000 units of cord blood are stored in public banks in the United States,mainly by banks in the National Cord Blood Program or the Coalition for Responsible Cord Blood Donation. The two programs have differing views on how a national network of cord blood stem cell banks should be administered.
Patrick Thompson,media relations coordinator for the National Marrow Donor Program,which oversees the coalition,said last week that the group will wait for the Institute of Medicine's report before committing support to federal legislation.