BILL NUMBER: AB 2427 CHAPTERED 09/28/00 CHAPTER 803 FILED WITH SECRETARY OF STATE SEPTEMBER 28, 2000 APPROVED BY GOVERNOR SEPTEMBER 28, 2000 PASSED THE ASSEMBLY AUGUST 30, 2000 PASSED THE SENATE AUGUST 29, 2000 AMENDED IN SENATE AUGUST 28, 2000 AMENDED IN SENATE AUGUST 25, 2000 AMENDED IN SENATE JUNE 29, 2000 AMENDED IN SENATE JUNE 14, 2000 AMENDED IN ASSEMBLY APRIL 24, 2000 AMENDED IN ASSEMBLY APRIL 5, 2000 INTRODUCED BY Assembly Member Kuehl (Coauthors: Assembly Members Jackson and Knox) (Coauthor: Senator Perata) FEBRUARY 24, 2000 An act to amend Section 125001 of, to add Sections 124976 and 124977 to, and to repeal Section 125005 of, the Health and Safety Code, relating to genetic testing, and making an appropriation therefor. LEGISLATIVE COUNSEL'S DIGEST AB 2427, Kuehl. Genetic diseases: genetic screening. The Hereditary Disorders Act requires the State Department of Health Services to establish a program to provide genetic screening services. The department is required to charge a fee and deposit the fee into the Genetic Disease Testing Fund, which is continuously appropriated for certain purposes. This bill would provide that fees would be established and adjusted by the Director of Health Services. This bill would expand the purposes for which the moneys in the fund may be expended, thereby making an appropriation. This bill would also state the Legislature's findings regarding the maintenance of genetic screening programs. Existing law requires the department to establish a program for genetic disease testing and authorizes the department to provide facilities to and contract with qualified laboratories. Existing law requires the department to charge a fee for additional screening and lists the additional genetic conditions that may be tested for under the program. This bill would instead require the department to establish a program for the development and evaluation of genetic disease testing. It would permit the department to charge a fee for developmental screening and would delete the list of genetic conditions that may be tested for under the program. Existing law requires the department to report to the Legislature regarding program progress by June 30, 2000. This bill would require the department to report to the Legislature on or before January 1, 2002. This bill would also appropriate $3,900,000 to the department from the Genetic Disease Testing Fund to fund the cost of the trial of the program and a followup report. Appropriation: yes. THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS: SECTION 1. Section 124976 is added to the Health and Safety Code, to read: 124976. The Genetic Disease Testing Fund is continued in existence as a special fund in the State Treasury. All moneys collected by the department for activities conducted as authorized in this chapter shall be deposited in the Genetic Disease Testing Fund which, notwithstanding Section 13340 of the Government Code, is continuously appropriated to the department to carry out the purposes of this chapter. SEC. 2. Section 124977 is added to the Health and Safety Code, to read: 124977. (a) It is the intent of the Legislature that, unless otherwise specified, the program carried out pursuant to this chapter be fully supported from fees collected for services provided by the program. (b) (1) The department shall charge a fee to all payers for any tests or activities performed pursuant to this chapter. The amount of the fee shall be established by regulation and periodically adjusted by the director in order to meet the costs of this chapter. Notwithstanding any other provision of law, any fees charged for screening and followup services provided to Medi-Cal eligible persons, health care service plan enrollees, or persons covered by disability insurance policies, shall be paid in full directly to the Genetic Disease Testing Fund, subject to all terms and conditions of each enrollee's or insured's health care service plan or insurance coverage, whichever is applicable, including, but not limited to, copayments and deductibles applicable to these services, and only if these copayments, deductions, or limitations are disclosed to the subscriber or enrollee pursuant to the disclosure provisions of Section 1363. (2) The department shall expeditiously undertake all steps necessary to implement the fee collection process, including personnel, contracts, and data processing, so as to initiate the fee collection process at the earliest opportunity. In no event shall a hospital be charged a fee for any test performed pursuant to this chapter on or after July 1, 2001. (c) (1) The Legislature finds that timely implementation of changes in genetic screening programs and continuous maintenance of quality statewide services requires expeditious regulatory and administrative procedures, including policies and procedures developed pursuant to Sections 12101 and 12102 of the Public Contract Code or Division 25.2 (commencing with Section 38070) of the Health and Safety Code, to obtain the most cost-effective electronic data processing, hardware, software services, testing equipment, testing services, and followup contracts. (2) The expenditure of funds from the Genetic Disease Testing Fund for these purposes shall not be subject to Section 12113.5 of, and Chapter 2 (commencing with Section 10290) of Part 2 of Division 2 of, the Public Contract Code. The department shall provide the Department of Finance with documentation that equipment and services have been obtained at the lowest cost consistent with technical requirements for a comprehensive high-quality program. (d) Nothing in this section shall be construed to impose a new mandated benefit on health care service plans and health insurers. SEC. 3. Section 125001 of the Health and Safety Code is amended to read: 125001. (a) The Legislature finds and declares all of the following: (1) California requires testing at birth for certain genetic diseases or conditions. (2) Technology called tandem mass spectography is now available that would permit testing for many more genetic diseases or conditions. (3) Many of the additional tests can be made from the same blood sample at costs of between eighteen dollars ($18) and twenty dollars ($20). (4) It is the intent of the Legislature that a program for testing services and training be initiated as expeditiously as possible utilizing laboratory services experienced in tandem mass spectography. (b) The department shall establish a program for the development and evaluation of genetic disease testing, and may provide laboratory testing facilities or make grants to, contract with, or make payments to, any laboratory that it deems qualified to conduct tandem mass spectrometry testing or with any metabolic specialty clinic to provide necessary treatment with qualified specialists. The program shall provide genetic screening and followup services for persons who elect to have the additional screening. (c) The one-time sum of three million nine hundred thousand dollars ($3,900,000) is appropriated to the department from the Genetic Disease Testing Fund in order to support the cost of the trial of the program and a followup report. It is the intent of the Legislature that no additional fees be charged to patients for additional genetic screening provided through tandem mass spectrometry in the trial of the program. (d) The department shall report to the Legislature regarding the progress of the program on or before January 1, 2002. The report shall include the costs for screening, followup, and treatment as compared to costs and morbidity averted for each condition tested for in the program. SEC. 4. Section 125005 of the Health and Safety Code is repealed. SEC. 5. Sections 1 and 4 of this act shall only become operative if Senate Bill 1364 is not enacted during the 2000 portion of the 1999-2000 Regular Session, or, if enacted, Senate Bill 1364 does not amend Section 125005 of the Health and Safety Code.