Sickle Cell Disease Awareness

AB 52 (Portantino) 2009-2010

CALIFORNIA UMBILICAL CORD BLOOD COLLECTION PROGRAM

Summary

Last session, AB 34 was signed into law establishing the California Umbilical Cord Blood Collection Program.  The purpose of this program is to collect cord blood for public use and deposit in the national inventory which is currently deficient of ethnic and biracial/multiracial cord blood.  Since California is one of the most ethnically diverse states, collections from California will help mend the deficiency and increase our chance for compatible cord blood when needed for transplantation.

Before last session’s bill was signed, significant details were removed at the request of the administration for various reasons.   These details are considered important to the program’s success and were crafted to avoid duplication, startup pitfalls, and to contain costs.

 AB 52 introduced December 2, 2008 brings back these important program details which include

• Confidentiality protections;
• An implementing committee of various experts in cord blood collection and transplantation;
• Bare minimum program objectives to ensure experts have the flexibility to steer the program with inventory and industry changes; and
• Reporting requirements.

The Legislature and Governor will appoint an implementing committee with expertise and experience in all aspects of umbilical cord blood banking, storage, and utilization.  The committee will be charged with developing policy that will lead to an adequate inventory of cord blood for public use with a specific target of genetic diversity.  This committee will be used to help the administration structure the program with existing information, research, as well as lessons learned from previous and ongoing national, state, private, and international umbilical cord blood collection programs.  A competitive process will be used for participation in the program and funding will be gained from private, state, and federal sources.

Funding for the program will come in part from a $2 fee added to the cost of a certified birth certificate.  This is expected to raise approximately $3 million per year of the needed $10 million to fully fund the program.  Federal and private monies are being sought to make up the balance.

Background

Following the birth of a baby, the umbilical cord is normally discarded along with the placenta.    However, medical research has shown blood retrieved from the umbilical cord is rich in stem cells that can be used to treat at least nine disorders and diseases with clinical trials at various stages for about 60 other disorders and diseases affecting the blood and immune system, including leukemia, thalassemia, sickle cell anemia, certain cancers, and others.

Across America, many expecting parents are presented with information about umbilical cord blood storage.  The procedure is painless, quick, and risk-free for the mother and the newborn.  It involves drawing blood from a vein in the umbilical cord into a blood bank bag and cryopreserving (freezing) the cells. 

Parents can chose a private bank where they pay a one time fee of about $2,000.00 or more and a yearly storage fee of about $200.00 to keep it available for their own use.  However, their chances of using it are very low unless there is a demonstrated medical need.

Alternatively, parents can chose a public bank at no cost and donate their babies’ cord blood for public use. 

Since families without risk factors are unlikely to need the cord blood for personal use and an ongoing demand for a wide variety of high-quality, genetically-diverse cord blood is needed for public use, AB 52 is designed for immediate collections to increase the availability of cord blood for transplantations.   

According to the National Marrow Donor Program, over 10,000 children and adults could benefit from a transplant from someone unrelated to them, but only 25 percent actually receive one.  This is, in part, due to the lack of acceptable stem cell sources. Many die as a result of being unable to find suitable donors.  While this is problem for all people, it is particularly troublesome for people of color who are less likely to find matches than Caucasians.  For this reason, AB 52 directs the state to seek genetically diverse collections to ensure an adequate inventory that mirrors California’s population. 

Support

• African American Blood Drive and Bone Marrow Registry for Sickle Cell Disease Awareness
• American College of Obstetricians and Gynecologists, IX/CA (Sponsor)
• American Federation of State, County, and Municipal Employees
• Association of Northern California Oncologists
• Blood Centers of California
• California Catholic Conference
• California Communities United Institute
• California Hospital Association
• California Medical Association
• California Nurses Association
• California State University, Long Beach, Nursing Students
• City of Hope
• Joanne Pang Foundation
• National Marrow Donor Program
• Planned Parenthood Affiliates of California, Inc.
• Project RACE
• StemCyte, Inc.
• University of California

For More Information Please Contact:

Diane Shelton                                                                       Assembly Member Anthony J. Portantino                                   916-319-2044

Shannon Smith-Crowley                                                   American College of Obstretricians and Gynecologists, IX/CA