04/07/2015 03:00 PM House HEALTH & SOCIAL SERVICES

         HCR 9-CONGENITAL DIAPHRAGM. HERNIA ACTION DAY                                                                      
                                                                                                                                
3:06:30 PM                                                                                                                    
                                                                                                                                
CHAIR SEATON announced that the first order of business would be                                                                
HOUSE CONCURRENT RESOLUTION NO. 9, Proclaiming April 19, 2015,                                                                  
as Congenital Diaphragmatic Hernia Action Day.                                                                                  
                                                                                                                                
3:06:45 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  CHARISSE   MILLETT,  Alaska   State  Legislature,                                                               
explained that HCR  9 declared April 19, 2015,  as the Congenital                                                               
Diaphragmatic Hernia (CDH)  day of action.  She  relayed that CDH                                                               
occurred when  a fetal diaphragm,  the muscle dividing  the chest                                                               
and the abdominal  cavity, did not close completely.   It was not                                                               
known what  caused CDH or how  to completely cure it,  although 1                                                               
in 2,500 babies are diagnosed  with CDH every year, with survival                                                               
of only 50 percent of these  babies.  She noted that, although at                                                               
least four families  had babies diagnosed with CDH  every day, it                                                               
did not get  very much attention.  She expressed  her desire that                                                               
the proposed  resolution would show  families that they  were not                                                               
alone  in this  struggle,  and would  raise  awareness about  the                                                               
devastating disease.   She  reported that 14  other states  and 9                                                               
cities  had  also   declared  that  April  19,   2015,  would  be                                                               
acknowledged as CDH Day of Action.                                                                                              
                                                                                                                                
REPRESENTATIVE  STUTES asked  how  many babies  in  the State  of                                                               
Alaska were born with CDH.                                                                                                      
                                                                                                                                
3:08:55 PM                                                                                                                    
                                                                                                                                
GRACE  ABBOTT,  Staff,  Representative Charisse  Millett,  Alaska                                                               
State Legislature, said that there  was a representative from the                                                               
Division  of Public  Health who  would elaborate  on the  effect.                                                               
She  pointed  out   that,  as  disclosure  of   the  disease  was                                                               
voluntary, the statistics were not comprehensive.                                                                               
                                                                                                                                
REPRESENTATIVE  STUTES asked  whether  the  disease was  visually                                                               
apparent.                                                                                                                       
                                                                                                                                
REPRESENTATIVE  MILLETT replied  that  it occurred  in utero  and                                                               
could only  be detected through testing  as it was the  inside of                                                               
the  diaphragm which  did not  fully develop;  however, visually,                                                               
the child looked normal.                                                                                                        
                                                                                                                                
3:11:00 PM                                                                                                                    
                                                                                                                                
CHAIR SEATON opened public testimony.                                                                                           
                                                                                                                                
REPRESENTATIVE STUTES asked how  many children in Alaska annually                                                               
were born with CDH.                                                                                                             
                                                                                                                                
JARED PARRISH,  Senior Scientist, Alaska Birth  Defects Registry,                                                               
Women,  Children  & Family  Health,  Division  of Public  Health,                                                               
Department  of  Health  and  Social   Services,  in  response  to                                                               
Representative Stutes,  said that  the data  over the  past eight                                                               
years  showed there  were about  6.4 cases  each year  in Alaska,                                                               
which was about 1 in 2,200  live births, compared to the national                                                               
average of about 1 in 2,500 live births.                                                                                        
                                                                                                                                
3:12:38 PM                                                                                                                    
                                                                                                                                
DAWN WILLIAMSON,  President, Cherubs,  said that Cherubs  was the                                                               
world's  largest  charity for  families  affected  by CDH.    She                                                               
stated that the  charity served more than 5,000  families in more                                                               
than 60 countries.   She explained that it was  very severe, with                                                               
only a  50 percent survival rate  for the 1,600 annual  births in                                                               
the United States.   She said that, although it  was as common as                                                               
cystic fibrosis  and spinal bifada,  most people had  never heard                                                               
of  CDH  which  was  the  reason  for  the  crusade  for  greater                                                               
awareness  to support  more  action and  research  funding.   She                                                               
explained that CDH  occurred when there was a hole  in the baby's                                                               
diaphragm  and  organs  could  herniate  upward  into  the  chest                                                               
cavity, inhibiting  lung growth.   She  declared that  this birth                                                               
defect was very  severe, and there was not any  known cause.  She                                                               
reported  that  CDH only  received  a  fraction of  the  research                                                               
funding  compared   to  other  causes   with  similar   rates  of                                                               
occurrence.  She expressed  appreciation for this acknowledgement                                                               
by the legislature.                                                                                                             
                                                                                                                                
CHAIR SEATON  asked whether the  majority of the  deaths occurred                                                               
after diagnosis, or because there was not a diagnosis.                                                                          
                                                                                                                                
MS. WILLIAMSON  estimated that about  85 percent of  the children                                                               
were  diagnosed in  utero  with routine  ultra  sound, while  the                                                               
remainder were diagnosed at birth when  the cord was cut, and the                                                               
baby could  not breathe.   She declared  that most of  the deaths                                                               
occurred within  the first six  months, as surgery  was necessary                                                               
soon after birth.  She declared  that there were only a few cases                                                               
of children  not diagnosed in  the first  few months.   Until the                                                               
1990s  very few  children with  CDH survived,  the U.S.  survival                                                               
rate was 1  percent, because the medical technology  to take care                                                               
of these children at birth was not available.                                                                                   
                                                                                                                                
3:15:56 PM                                                                                                                    
                                                                                                                                
TODD  MEARS declared  his support  of the  resolution and  shared                                                               
that his daughter had passed away  from CDH.  He stated that they                                                               
first learned of  CDH after an ultrasound at the  20-week mark of                                                               
pregnancy.  Although they had been  told that the outcome was not                                                               
promising, they chose to go ahead  with the pregnancy.  He shared                                                               
that  the  ensuing  hospital  visits  were  all  in  Seattle,  as                                                               
Anchorage did  not have  the necessary  facilities, and  that his                                                               
daughter only  lived for 73:15:56  hours.  He revealed  that this                                                               
was very special as it had affected his family and friends.                                                                     
                                                                                                                                
3:18:04 PM                                                                                                                    
                                                                                                                                
CHAIR SEATON  closed public testimony  after ascertaining  no one                                                               
further wished to testify.                                                                                                      
                                                                                                                                
3:18:35 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  FOSTER  moved  to   report  HCR  9,  Version  29-                                                               
LS0713\A, out  of committee  with individual  recommendations and                                                               
the accompanying  zero fiscal notes.   There being  no objection,                                                               
HCR  9  was moved  from  the  House  Health and  Social  Services                                                               
Standing Committee.                                                                                                             
                                                                                                                                
3:19:19 PM                                                                                                                    
                                                                                                                                
The committee took a brief at-ease.