BILL ANALYSIS                                                                                                                                                                                                    �




                   Senate Appropriations Committee Fiscal Summary
                            Senator Kevin de Le�n, Chair


          AB 1559 (Pan) - Newborn screening program.
          
          Amended: May 23, 2014           Policy Vote: Health 8-0
          Urgency: No                     Mandate: No
          Hearing Date: June 30, 2014                             
          Consultant: Brendan McCarthy    
          
          This bill meets the criteria for referral to the Suspense File.
          
          
          Bill Summary: AB 1559 would add adrenoluekodystrophy (ALD) to  
          the state's newborn screening program.

          Fiscal Impact: 
              One-time costs of about $2 million for technical and  
              administrative activities to add ALD to the newborn  
              screening program (Genetic Disease Testing Fund).

              Annual screening costs of $4.7 million per year, covered by  
              fees (Genetic Disease Testing Fund). Adding ALD to the  
              newborn screening program would require the Department of  
              Public Health to raise the fee charged for screening by $11  
              per birth.

              Increased costs or about $2.6 million per year to the  
              Medi-Cal program to pay the fees charged to support the  
              newborn screening program for births paid for by Medi-Cal  
              (General Fund and federal funds).
              
              Increased costs of about $50,000 per year to CalPERS to pay  
              the fees charged to support the newborn screening program  
              for births paid for by CalPERS (various funds).
              
              Likely long-term savings due to improved clinical outcomes  
              from early testing and treatment (various funds). According  
              to information provided by physicians treating children with  
              ALD, clinical outcomes can be greatly improved by early  
              diagnosis and treatment. Without screening for ALD, a  
              diagnosis often is not made until serious symptoms have  
              occurred. At that point, treatment is much less effective  
              and the child is at high risk for death or permanent  
              disability. On the other hand, if treatment is provided at  








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              the first sign that ALD is occurring (through an MRI  
              diagnosis, before clinical symptoms are observed) long-term  
              outcomes are greatly improved. 

          Background: The Department of Public Health operates the Genetic  
          Disease Testing Program, which screens all newborns in the state  
          for more than 70 inherited conditions. Both the federal  
          government and the Department have advisory committees that make  
          recommendations on new conditions that should be added to the  
          federal screening guidelines and the state screening program.  
          The Genetic Disease Testing Program is funded by fees assessed  
          on health plans and insurers for each birth in the state. The  
          current fee for newborn screening is set at $111.70.

          Proposed Law: AB 1559 would add adrenoluekodystrophy (ALD) to  
          the state's newborn screening program.

          Related Legislation: 
              SB 1334 (Walters) would have required the Department of  
              Public Health to expand the newborn screening program to  
              test newborns in Orange County for Krabbe disease. That bill  
              was not heard in the Senate Health Committee.
              SB 224 (Walters) would have required the Department of  
              Public Health to expand the newborn screening program to  
              test newborns in Orange County for Krabbe disease. That bill  
              was held on the Assembly Appropriations Committee's Suspense  
              File.
              AB 395 (Pan, Statutes of 2011) expanded the newborn  
              screening program to include severe combined  
              immunodeficiency.

          Staff Comments: Under current law, the Department is authorized  
          to increase the fee associated with newborn screening to cover  
          the costs of the program. The Department indicates that under  
          the bill the current fee would have to be raised by $11 per  
          birth. Medi-Cal and other public health care programs that pay  
          for labor and delivery costs would be required to pay the  
          additional fees. 

          Neither the advisory committee to the federal Health and Human  
          Services Agency nor the advisory committee to the Department of  
          Public Health have recommended including ALD in new born  
          screening programs at this time. However, in January 2014, the  
          federal advisory committee voted to move screening for ALD to an  








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          external evidence review committee. The recommendation from that  
          external evidence review committee is expected in early 2015  
          with subsequent decisions by the advisory committee and the  
          Secretary of the federal Health and Human Services Agency.