04/01/2013 01:30 PM Senate HEALTH & SOCIAL SERVICES

           SB 87-NEWBORN SCREENING FOR HEART DEFECTS                                                                        
                                                                                                                              
1:31:46 PM                                                                                                                  
CHAIR STEDMAN  announced that the  first order of  business would                                                               
be SB 87.                                                                                                                       
                                                                                                                                
1:31:54 PM                                                                                                                    
At ease                                                                                                                       
                                                                                                                              
1:32:54 PM                                                                                                                  
CHAIR STEDMAN  said it was the  first hearing on SB  87. He noted                                                               
he did not intend to move the bill today.                                                                                       
                                                                                                                                
SENATOR  PETER MICCICHE,  sponsor  of SB  87,  shared a  personal                                                               
story about his  niece who had a congenital  heart condition that                                                               
was caught  by pulse  oximetry screening in  Japan where  she was                                                               
born.  He stated  that  it is  estimated that  one  in a  hundred                                                               
children are born  with a congenital heart defect.  It kills more                                                               
children  in  their first  year  of  life  than any  other  birth                                                               
defect.  The U.S.  is  moving toward  adopting  the same  newborn                                                               
screening test procedures found in Japan and other countries.                                                                   
                                                                                                                                
He listed  hospitals in Alaska  that currently  perform screening                                                               
tests:  Providence,   Alaska  Regional,  Alaska   Native  Medical                                                               
Center,  Mat-Su Regional,  Bassett Army,  Fairbanks, and  Central                                                               
Peninsula  Hospitals. He  described  the  screening; it  utilizes                                                               
pulse oximetry equipment most hospitals  and clinics already have                                                               
and is  painless and noninvasive.  He said the test  helps detect                                                               
over  75  percent   of  those  with  heart   conditions,  with  a                                                               
sensitivity rate of  over 99 percent and a  false positive rating                                                               
of less than .03 percent.                                                                                                       
                                                                                                                                
He stated that the  cost of the test is under  $10 and is covered                                                               
by health  insurance. The cost  of early detection is  much lower                                                               
than the cost of late-diagnosed  treatment and the cost of caring                                                               
for  a  disabled  child  later.  The  bill  will  require  larger                                                               
hospitals,  beginning  in January  2014,  to  test newborns  with                                                               
pulse oximetry.  Birthing centers  and hospitals with  fewer than                                                               
50 beds will have until January 2016 to do so.                                                                                  
                                                                                                                                
SENATOR  MICCICHE pointed  out that  parents can  opt out  of the                                                               
test. In the event of  abnormal results, the health care provider                                                               
will inform the parents of  their options. The bill provides that                                                               
hospitals  report newborn  screening results  to the  Division of                                                               
Public Health.                                                                                                                  
                                                                                                                                
He noted  that the fiscal note  needs work. He explained  that he                                                               
wants  the Department  of Health  and Social  Services (DHSS)  to                                                               
keep  data showing  that the  test was  administered and  whether                                                               
there was a positive or negative  result. He said he believes the                                                               
fiscal note will be much lower.                                                                                                 
                                                                                                                                
He  stated that,  so far,  there has  been no  opposition to  the                                                               
bill. He  listed supporters  of the  bill: Alaska  State Hospital                                                               
and Nursing  Home Association, Alaska Nurses  Association, Alaska                                                               
State  Medical  Association,  Alaska  Primary  Care  Association,                                                               
Alaska  Native  Tribal  Health   Consortium,  and  the  insurance                                                               
industry.                                                                                                                       
                                                                                                                                
He concluded that his intention  with this legislation is to save                                                               
as  many babies  as possible.  The effective  date is  far enough                                                               
away  to ensure  easy compliance.  He  wished to  hold the  bill,                                                               
pending more information from DHSS.                                                                                             
                                                                                                                                
1:38:30 PM                                                                                                                    
CHAIR STEDMAN noted  one fiscal note from DHSS for  the amount of                                                               
$384,800  in  which $346,300  is  general  funds and  $38,500  is                                                               
federal receipts.                                                                                                               
                                                                                                                                
BECKY MILLER,  representing herself,  testified in support  of SB
. She spoke as  the mother of a child with  a heart defect. She                                                               
shared a  personal story about  her daughter. She said  that over                                                               
50 percent  of Alaska babies  with congenital heart  defects will                                                               
go  undiagnosed.  There  are no  pediatric  cardiac  surgeons  in                                                               
Alaska and it is critical  that babies are diagnosed immediately.                                                               
She stressed  that a  simple test can  save babies'  lives. Early                                                               
screening would also save the state money.                                                                                      
                                                                                                                                
JAMES CHRISTIANSON, Pediatric  Cardiologist, testified in support                                                               
of SB 87. He described heart  conditions as the most common birth                                                               
defect in  infants. He said the  test is simple and  painless and                                                               
it screens infants  who may have issues later on.  He stated that                                                               
out of 12,000 births per year  in Alaska, about 100 children will                                                               
have congenital heart  disease, and of those, about  40 will have                                                               
critical heart  disease. He emphasized  that pulse  oximetry will                                                               
be a cost-effective method of helping newborns in Alaska.                                                                       
                                                                                                                                
1:42:51 PM                                                                                                                    
ANNAMARIE SAARINEN,  Co-Founder, Newborn Coalition,  testified in                                                               
support of SB 87. She shared  a personal story about her daughter                                                               
and  the  two heart  surgeries  she  survived. She  stressed  the                                                               
importance of the screening, which  many states are adopting. The                                                               
babies in rural  and remote areas are the ones  most likely to go                                                               
undetected without the screening.                                                                                               
                                                                                                                                
LILY  LOU,   Medical  Director,  Newborn  Intensive   Care  Unit,                                                               
Providence Children's  Hospital, testified  in support of  SB 87.                                                               
She  described the  test  as part  of a  "standard  of care"  for                                                               
newborns. She  said it  makes a real  difference to  diagnose the                                                               
problem before  damage is seen.  She listed two  important points                                                               
to  consider. The  first is  that pulse  oximetry is  the current                                                               
gold   standard  and   if  new   technology  is   developed,  the                                                               
legislation should include  a way to update  practices. The bill,                                                               
as  written, does  not  address  those born  at  home. It  should                                                               
include all babies born in Alaska.                                                                                              
                                                                                                                                
1:46:44 PM                                                                                                                    
JENNA APP, Alaska Advocacy  Director, American Heart Association,                                                               
testified in  support of SB  87. She discussed the  importance of                                                               
diagnosing congenital  heart disease in  infants as soon  as they                                                               
are born. She  said the screening is widely  supported across the                                                               
nation.                                                                                                                         
                                                                                                                                
CHAIR STEDMAN closed public testimony and set SB 87 aside.