BILL ANALYSIS                                                                                                                                                                                                    �



                                                                  SB 224
                                                                  Page  1

          Date of Hearing:   July 3, 2013

                        ASSEMBLY COMMITTEE ON APPROPRIATIONS
                                  Mike Gatto, Chair

                    SB 224 (Walters) - As Amended:  May 28, 2013 

          Policy Committee:                             HealthVote:18-0

          Urgency:     No                   State Mandated Local Program:  
          No     Reimbursable:              No

           SUMMARY  

          This bill requires the Department of Public Health (DPH) to  
          establish a pilot program in Orange County to expand newborn  
          genetic disease screening to include screening for Krabbe  
          disease, and sunsets the pilot on January 1, 2019.

           FISCAL EFFECT  

          1)Increased annual costs for the duration of the pilot of  
            $750,000 to $800,000 in 2013-14 and $550,000 to $600,000 per  
            year in the following years.  Most of these costs would be  
            incurred by DPH (Genetic Disease Testing Fund) and include a  
            one-time information technology upgrade as well as testing  
            fees. Medi-Cal would pay a portion of these costs, estimated  
            at less than $200,000 annually (50% GF, 50% federal funds).

          2)Unknown costs or savings to the extent earlier diagnoses lead  
            to earlier treatments, improve medical outcomes, and reduce  
            future costs.    
           
          COMMENTS  

           1)Rationale  .  Most children who have Krabbe disease are not  
            diagnosed until symptoms present.  The sponsors, Judson's  
            Legacy and Hunter's Hope Foundation, assert Krabbe disease can  
            be effectively treated and therapy may lead to relatively  
            normal lives, but early identification is key. DPH operates  
            the Genetic Disease Testing Program, which screens all  
            newborns in the state for more than 70 inherited conditions.  

           2)Krabbe Disease  . According to the Mayo Foundation for Medical  
            Education and Research, Krabbe disease is an inherited, often  








                                                                  SB 224
                                                                  Page  2

            fatal disorder affecting the central nervous system. The  
            disease affects muscle tone and movement, and may cause vision  
            and hearing loss, among other devastating effects.  In most  
            cases, Krabbe disease develops in babies before six months of  
            age, although it can occur in older children and in adults.   
            There is no cure and treatment generally aims to ease  
            symptoms.  Early studies using stem cell transplants to treat  
            Krabbe disease before symptoms begin have had some success.   
            Krabbe disease affects about one in every 100,000 people in  
            the United States.

           3)Prior Legislation  . SB 1072 (Strickland) of 2012 would have  
            required DPH, until January 1, 2018, to expand statewide  
            screening of newborns to include Hurler syndrome and Krabbe  
            disease. SB 1072 was held on the Senate Appropriations  
            Committee's Suspense File.
           Analysis Prepared by  :    Debra Roth / APPR. / (916) 319-2081