BILL ANALYSIS ACR 74 Page 1 Date of Hearing: March 23, 2010 ASSEMBLY COMMITTEE ON HEALTH William W. Monning, Chair ACR 74 (Portantino and Hill) - As Amended: February 24, 2010 SUBJECT : Umbilical cord blood banking. SUMMARY : States that the Legislature desires to find ways to help California gain a viable public umbilical cord blood banking system to ensure that all races and ethnicities have an equal probability of finding a match when medically necessary. Specifically, this resolution : 1)Makes a number of legislative findings and declarations related to the public and private umbilical cord blood collection industry as a treatment for blood cancers and other diseases, the lack of public knowledge about the differences of the public and private umbilical cord blood banking systems, the lack of genetic diversity of public umbilical cord blood inventories, the importance of using umbilical cord blood that is not suitable for transplantation for research institutions to explore the potential of umbilical cord blood stem cells to treat medical conditions, and the importance of building a viable public banking system. 2)States the Legislature's desire to find ways to help California gain a viable public umbilical cord blood banking system to ensure that all races and ethnicities have an equal probability of finding a match when medically necessary. 3)States the Legislature's support for research being done with collected units that are not suitable for transplantation. EXISTING FEDERAL LAW : 1)Establishes a national umbilical cord blood network and authorizes funding to collect and maintain human cord blood stem cells for the treatment of patients and for research. 2)Includes a process for maternal donors to be informed of all medically appropriate options for cord blood banking and includes additional directives for cord blood donation, education, and advocacy. ACR 74 Page 2 EXISTING STATE LAW : 1)Requires the California Department of Public Health (DPH) to establish, by January 1, 2010, and until January 1, 2015, the Umbilical Cord Blood Collection Program (UCBCP) for the purpose of collecting and storing umbilical cord blood and increasing the amount of umbilical cord blood that is donated in the state and added to the National Cord Blood Inventory (NCBI). 2)Authorizes the UCBCP, to the extent private or public funds are identified and secured for these purposes, to contract with blood banks that are licensed or accredited to provide umbilical cord blood banking storage services, for the purpose of collecting and storing umbilical cord blood for public transplantation services. Permits DPH to implement any additional standards for blood banks to collect and store umbilical cord blood through the adoption of regulations. 3)Requires DPH, contingent upon private funding, to conduct the Umbilical Blood Community Awareness Campaign to provide awareness and information regarding umbilical cord blood banking options using print media, radio, the Internet, outdoor advertising and other media, to establish an Internet Web site, and to undertake public education activities related to umbilical cord blood donation to targeted populations, as appropriate. FISCAL EFFECT : None COMMENTS : 1)PURPOSE OF THIS RESOLUTION . According to the author, most cord blood is collected for private usage and although this service is a great benefit to individuals, it does not ensure the general public has access to this potential treatment for a variety of medical conditions. The author believes that this resolution will help increase awareness for the need to create a public cord blood banking system that will bring the benefits of this resource to a broad and more diverse group of Californians. 2)UMBILICAL CORD BLOOD . According to information from the National Marrow Donor Program (NMDP), cord blood, which is the blood collected from the umbilical cord and placenta after a ACR 74 Page 3 baby is born, is rich in blood-forming cells that can be used in transplants for patients with leukemia, lymphoma, and many other life-threatening diseases. Cord blood is one of three sources of cells used in transplants; the other two are bone marrow and peripheral blood stem cells. The NMDP estimates that, on any given day, more than 6,000 patients around the world are searching the NMDP's registry for a matching bone marrow or cord blood donor. Since cord blood is stored and ready to use and it does not require a perfect donor match, the NMDP states that it is especially useful for patients who need a transplant quickly, patients who have difficulty finding a matched bone marrow donor, and patients from racially diverse communities who often have uncommon tissue types. Patients are more likely to match someone who shares their racial and ethnic heritage. The NMDP reports that, in 2008, 36% of the 90,000 cord blood units in its registry went to patients from racially or ethnically diverse communities and the need for cord blood donations from these populations remains high. In January 2007, the American Academy of Pediatrics (AAP) issued an updated policy statement on cord blood banking for potential future transplantation. The AAP estimates that the chances of a child needing his or her own cord blood stem cells in the future range from one in 1,000 to one in 200,000. In the event that a child requires a stem cell transplant, the AAP indicates that it is unlikely that the child's own cord blood would be the desired source of stem cells because the cells would reintroduce the disease into the child's body. In these cases, a sibling donor is ideal and usually still alive and available as a donor so banked blood is not needed. AAP states that storing a child's cord blood is only worthwhile when there is a sibling with a disease that can be treated by a transplant. Under these circumstances there is a one-in-four chance that the new baby will be a match for his or her sibling. Given that the probability of using one's own cord blood in the first 20 years of life is very small, the AAP does not favor storage of cord blood for personal use and encourages families to donate their newborn's cord blood to public banks, if accessible in their area, for use by other individuals in need. 3)PUBLIC AND PRIVATE CORD BLOOD BANKS . Public and private banks provide for the collection and storage of cord blood. Public banks promote related and unrelated donation, similar to the ACR 74 Page 4 current collection of whole blood units in the U.S., for transplantation or research purposes. Private banks store cord blood from an individual for subsequent use by the same individual or his or her family members should the need arise. Private banks typically charge between $1,000 and $2,000 in collection fees and between $50 and $125 annually for storage. Public banks do not charge for cord blood that is donated for public use. The American Association of Blood Banks (AABB) and the Foundation for the Accreditation of Cellular Therapy (FACT) provide voluntary accreditation of cord blood banks using standards governing all aspects of operation, including collection, processing, and transplantation. According to their respective Web sites, 25 facilities nationwide are currently accredited by the AABB and eight currently have FACT accreditation. 4)CALIFORNIA BANKS . According to the NMDP, there are currently two participating public banks in California, StemCyte International Cord Blood Center in West Covina, which provides both public and private banking services, and Children's Hospital of Orange County Cord Blood Bank. Another public bank in San Diego, the Ashley Ross Cord Blood Program, participates in the NMDP, but it is not actively collecting cord blood at this time due to funding shortages. According to the nonprofit Parent's Guide to Cord Blood Foundation, there are currently four private banks operating in the state: CordBancUSA in Monterey, Cord Blood America and FamilyCord, both based in Los Angeles, and Cord Blood Registry in San Bruno. 5)NATIONAL CORD BLOOD INVENTORY . The NCBI, administered by the federal Health Resources and Services Administration (HRSA), was formed in 2006 to build a genetically and ethnically diverse inventory of 150,000 new units of high-quality umbilical cord blood for transplantation and make these cord blood units available to physicians and patients for blood stem cell transplants, and for research focusing on cord blood stem cell biology and the use of cord blood for human transplantation and cellular therapies. The NCBI works to achieve these goals by providing funds to reimburse a network of eight participating cord blood banks nationwide for the collection and storage of qualified cord blood units. HRSA has requested nearly $12 million in funding for the NCBI in 2009 to add approximately 8,650 new units of cord blood, for a total of approximately 37,280 units collected to date. ACR 74 Page 5 6)UCBCP . AB 34 (Portantino), Chapter 516, Statutes of 2007, creates the UCBCP for the purpose of collecting and storing umbilical cord blood. The UCBCP is permitted to contract with licensed and accredited blood banks to provide cord blood storage services, to the extent that public or private funds or grants are available and creates a special fund for donations and grants. According to DPH, it has not received public or private funds or grants to establish the UCBCP and has not received notice from the Department of Finance that any funds were deposited into the UCBCP Fund. However, DPH did report receiving a one-year grant of $471,240 from HRSA in September 2009 to collect, process, and store cord blood from minority populations in order diversify the national inventory of umbilical cord blood stem cell units that are available for transplantation. This appropriation is currently awaiting authorization through the budget process. 7)RELATED LEGISLATION . AB 52 (Portantino), introduced in 2009, extends for one year the date which DPH is required to establish the UBCBP from January 1, 2011, until January 1, 2020, for the purpose of collecting and storing umbilical cord blood for public use. Additionally the bill would require DPH to establish the California Umbilical Cord Collection Board that would administer the program, and would require the collection of a $9 fee for certified copies of birth certificates, $2 of the fee would be paid to the Umbilical Cord Blood Collection Program Fund. AB 52 is currently in Senate Health Committee. 8)PREVIOUS LEGISLATION : a) AB 34 (Portantino) directs DPH to establish the UCBCP by January 1, 2010, until January 1, 2015, for the purpose of collecting and storing umbilical cord blood, permits the UCBCP, to the extent public or private funds or grants are identified, to contract with blood banks that are licensed and accredited to provide cord blood storage services, and creates a special fund for donations and grants to UCBCP. b) SB 962 (Migden), Chapter 517, Statutes of 2007, requires DPH to provide umbilical cord blood samples to the Birth Defect Monitoring Program, for storage and research, as specified. ACR 74 Page 6 c) SB 1555 (Speier), Chapter 484, Statutes of 2006, requires blood banks, in order to provide umbilical cord blood banking storage services, to be licensed and requires DPH, contingent upon private funding, to conduct the Umbilical Blood Community Awareness Campaign. REGISTERED SUPPORT / OPPOSITION : Support American Congress of Obstetricians & Gynecologists, District IX/California (sponsor) Blood Centers of California California Catholic Conference University of California Opposition None on file. Analysis Prepared by : Martin Radosevich / HEALTH / (916) 319-2097