BILL ANALYSIS AB 52 Page 1 ASSEMBLY THIRD READING AB 52 (Portantino) As Amended June 2, 2009 2/3 vote. Urgency HEALTH 14-2 APPROPRIATIONS 13-2 ----------------------------------------------------------------- |Ayes:|Jones, Ammiano, Block, |Ayes:|De Leon, Nielsen, | | |Carter, De La Torre, | |Ammiano, | | |De Leon, Emmerson, Hall, | |Charles Calderon, Davis, | | |Hayashi, Hernandez, | |Fuentes, Hall, John A. | | | Bonnie Lowenthal, Nava, | |Perez, Price, Skinner, | | | V. Manuel | |Solorio, Torlakson, | | |Perez, Salas | |Krekorian | | | | | | |-----+--------------------------+-----+--------------------------| |Nays:|Gaines, Audra Strickland |Nays:|Duvall, Audra Strickland | | | | | | ----------------------------------------------------------------- SUMMARY : Extends for one year the date by which the Department of Public Health (DPH) is required to establish the Umbilical Cord Blood Collection Program (UCBCP); and, requires DPH to contract with up to five licensed or accredited blood banks to collect and store umbilical cord blood, as specified. Imposes a temporary $1 fee on specified birth certificates to fund the program. Contains an urgency clause to ensure that the provisions of this bill go into immediate effect upon enactment. Specifically, this bill : 1)Extends from January 1, 2010, to January 1, 2011, the date by which DPH is required to establish the UCBCP. 2)Requires DPH to contract with up to five entities, including entities that are licensed or accredited to provide umbilical cord blood collection and data processing, and entities that are licensed or accredited to provide cord blood banking storage services, to build an inventory of anonymous umbilical cord blood units and make the inventory available for transplant or medical research. Permits DPH to use a competitive process to identify qualified entities. 3)Requires entities selected pursuant to 2) above to have experience in blood collection, labeling, storage, AB 52 Page 2 transportation, and distribution. Requires DPH to endeavor to select entities with demonstrated ability to retrieve umbilical cord blood from ethnically diverse communities. 4)Requires DPH to ensure that any cord blood bank receiving funds through the UCBCP complies with existing federal requirements to ensure that all cord blood units collected can be listed through the National Cord Blood Inventory (NCBI). 5)Requires a medical provider or research facility to comply with, and be subject to existing penalties for violations, of all state and federal laws governing the protection of medical information and any personally identifiable information contained in the umbilical cord blood inventory. 6)Requires DPH to make every effort to avoid duplication or conflicts with existing and ongoing programs and to leverage existing resources and use its existing authority to promote the collection, storage, and use of umbilical cord blood and advise the Legislature of its needs to accomplish these goals. 7)Requires information collected pursuant to the UCBCP to be confidential and used solely for the program. Limits access to confidential information to authorized persons who agree, in writing, to maintain confidentiality. 8)Makes any person who violates a written confidentiality agreement or who uses confidential information in an unauthorized manner subject to a maximum civil penalty of $1,000, as specified. 9)Specifies that an individual to whom the confidential information pertains shall have access to his or her own personal information. 10)Increases the fee for a certified copy of a birth certificate from $7 to $8; and, requires the additional $1 to be deposited in the existing UCBCP Fund. 11)Sunsets the provisions of this bill on January 1, 2015. EXISTING LAW : 1)Requires DPH to establish the UCBCP by January 1, 2010, and AB 52 Page 3 until January 1, 2015, for the purpose of increasing the amount of umbilical cord blood that is donated in the state and added to the NCBI. 2)Authorizes the UCBCP, to the extent private or public funds are identified and secured for these purposes, to identify and provide funds for grants or contracts with qualified blood banks that are licensed and accredited to collect and store 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 Cord Blood Community Awareness Campaign to provide awareness, assistance, and information regarding umbilical cord blood banking options using brochures, television, print media, radio, the Internet, outdoor advertising, and other media; establish an Internet Web site with specified information; and, undertake public education activities related to umbilical cord blood donation to targeted populations, as appropriate. FISCAL EFFECT : According to the Assembly Appropriations Committee: 1)Increased annual special fund revenues and expenditures of $1.5 million as a result of a $1 increased fee on 1.5 million certified birth certificates each year until 2015. Revenues will change with changes in California's birth rate or demand for the vital records documents. Fee revenues will support the activities of contracted blood banks. Private blood banks currently charge $1,000 to $2,000 in one-time collection fees and $50 to $150 in annual storage fees. Public blood banks do not charge collection and storage fees on cord blood available for public use. 2)Unknown DPH fee supported special fund staffing costs to support the requirements of this bill. Recent amendments narrow the scope of DPH requirements substantially. COMMENTS : The author states that the NCBI currently lacks ethnic and multiracial cord blood and the UCBCP is intended to collect cord blood for public use and increase the volume of AB 52 Page 4 cord blood that can be added to the national inventory. According to the author, this bill prescribes important requirements relating to donor confidentiality protections, an implementing committee, minimum program standards, reporting requirements, and a temporary $2 funding mechanism, that are needed to fully implement the UCBCP. The author believes this bill will ensure that collections from California's ethnically diverse communities will help to address shortages in cord blood donations from minority groups and increase the likelihood of transplant patients finding suitable donor matches. According to information from the National Marrow Donor Program (NMDP), cord blood refers to the blood collected from the umbilical cord and placenta after a baby is born. 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. 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. Public and private banks provide for the collection and storage of cord blood. Public banks promote related and unrelated donation, similar to the current collection of whole blood units in the United States., 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 $150 annually for storage. Public banks do not charge for cord blood that is donated for public use. 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. 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. AB 52 Page 5 The sponsor of this bill, the American College of Obstetricians and Gynecologists, asserts that this bill builds on the highly-supported UCBCP to increase public banking of cord blood. The Blood Centers of California point out that the continuing lack of multi-ethnic cord blood donations is a pressing issue for many patients in need of transplants and this bill will help to increase the supply of cord blood units to ensure more compatible matches are available. The California Medical Association adds that this bill aims to improve collection of a genetically diverse cord blood supply that mirrors California's population for public use. Lastly, the American Federation of State, County and Municipal Employees states that it is important to utilize this valuable resource for the benefit of persons with certain blood deficiencies and genetic diseases. Analysis Prepared by : Cassie Rafanan / HEALTH / (916) 319-2097 FN: 0001373