04/13/2015 01:30 PM Senate HEALTH & SOCIAL SERVICES

         HCR 9-CONGENITAL DIAPHRAGM. HERNIA ACTION DAY                                                                      
                                                                                                                                
2:15:07 PM                                                                                                                    
CHAIR STEDMAN announced the consideration of HCR 9.                                                                             
                                                                                                                                
2:15:29 PM                                                                                                                    
GRACE  ABBOTT,  Staff,  Representative  Charisse  Millett,  Alaska                                                              
State Legislature,  presented HCR 9 on behalf of  the sponsor. She                                                              
said  the  resolution  proclaims  April 19,  2015,  as  Congenital                                                              
Diaphragmatic Hernia  (CDH) Action Day. She read  from the sponsor                                                              
statement:                                                                                                                      
                                                                                                                                
     The diaphragm is formed in the first trimester of                                                                          
     pregnancy and controls the lungs' ability to inhale                                                                        
     and exhale. Congenital diaphragmatic hernias (CDH)                                                                         
     occur when the diaphragm fails to form or to close                                                                         
     totally and an opening allows abdominal organs into                                                                        
     the chest cavity. This inhibits lung growth. CDH has a                                                                     
     mortality rate of roughly 50%, and occurs in                                                                               
     approximately 1 in every 2,500 births (1,600 cases in                                                                      
     the U.S. each year). Of the 50% that do survive, most                                                                      
     will endure long hospital stays, feeding issues,                                                                           
     asthma and other problems. A few of the survivors                                                                          
     suffer from severe long-term medical issues. The cause                                                                     
     of CDH is not yet known.                                                                                                   
                                                                                                                                
     CDH occurs as frequently as Spina Bifida and Cystic                                                                        
     Fibrosis, yet there is comparatively very little                                                                           
     research being done and virtually no media coverage.                                                                       
     House Concurrent Resolution 9 aims to raise awareness                                                                      
     of this condition, provide support and for victims and                                                                     
     their families, and encourage the research needed to                                                                       
     establish the cause and possible prevention by                                                                             
     proclaiming April 19th, 2015 as a CDH Day of Action.                                                                       
     CDH Days of Action for 2015 have been proclaimed in 14                                                                     
     states and 9 towns, including Anchorage.                                                                                   
                                                                                                                                
She noted  that the  idea for  the resolution  was brought  to the                                                              
sponsor  by a  friend who  lost their  child to  CDH. The  sponsor                                                              
hopes that  the resolution will  build support in  communities for                                                              
families  that suffer  from  this disease  and  push the  research                                                              
community toward finding a cure.                                                                                                
                                                                                                                                
2:17:48 PM                                                                                                                    
CHAIR STEDMAN opened public testimony.                                                                                          
                                                                                                                                
TODD MEARS, representing  himself, testified in support  of HCR 9.                                                              
He spoke  as  a father  of a baby  who died  due to  CDH. He  said                                                              
little was  known about CDH.  He said the  bill is  very important                                                              
to him.                                                                                                                         
                                                                                                                                
2:19:46 PM                                                                                                                    
DAWN  WILLIAMSON, Cherubs,  testified  in support  of  HCR 9.  She                                                              
said the goal of  the resolution is to raise awareness  of CDH and                                                              
to promote  research. She  shared statistics  related to  CDH. She                                                              
said she has lost a child to CDH.                                                                                               
                                                                                                                                
2:21:49 PM                                                                                                                    
CHAIR STEDMAN closed public testimony.                                                                                          
                                                                                                                                
SENATOR STOLTZE noted that it is a sobering topic.                                                                              
                                                                                                                                
SENATOR  ELLIS  moved   to  report  HCR  9  from   committee  with                                                              
individual recommendations.  There being no objection,  the motion                                                              
carried.                                                                                                                        
                                                                                                                                
CHAIR  STEDMAN noted  the committee  is taking  special action  to                                                              
move the bill due to the magnitude of the issue.