04/10/2025 03:30 PM Senate HEALTH & SOCIAL SERVICES

            SJR 16-FEDERAL ENSURING LASTING SMILES ACT                                                                      
                                                                                                                                
3:32:22 PM                                                                                                                    
CHAIR  DUNBAR   announced  the  consideration  of   SENATE  JOINT                                                               
RESOLUTION NO. 16  Urging the United States Congress  to pass the                                                               
Ensuring  Lasting Smiles  Act; and  urging lawmakers  to advocate                                                               
for   policies  that   guarantee   equitable   access  to   vital                                                               
healthcare.                                                                                                                     
                                                                                                                                
3:32:45 PM                                                                                                                    
SENATOR ELVI GRAY-JACKSON, District  G, Alaska State Legislature,                                                               
Juneau,   Alaska,  sponsor   of  SJR   16.  She   introduced  the                                                               
resolution, Ensuring Lasting Smiles  Act, which urges Congress to                                                               
require private  health insurance coverage for  the diagnosis and                                                               
treatment  of congenital  anomalies and  birth defects.  She said                                                               
coverage  would include  medically necessary  services and  items                                                               
that  improve,  repair,  or restore  normal  bodily  function  or                                                               
appearance, as  determined by the treating  physician, with cost-                                                               
sharing and  coverage limits no  more restrictive than  those for                                                               
other  medical and  surgical benefits.  She stated  that although                                                               
rare,   Hypohidrotic    Ectodermal   Dysplasia    (HED)   affects                                                               
approximately 1  in 20,000 newborns worldwide  and nearly 200,000                                                               
individuals in  the United States. Treatment  often requires both                                                               
medical  and dental  care, yet  many  medically necessary  dental                                                               
services   are  inadequately   covered,  placing   a  significant                                                               
financial  burden   on  families.   She  said  by   passing  this                                                               
resolution,  the Alaska  Legislature  would  stand with  families                                                               
affected   by  congenital   conditions   and   urge  the   Alaska                                                               
congressional delegation to  champion this legislation, affirming                                                               
that access to essential medical and  dental care is a right, not                                                               
a privilege.                                                                                                                    
                                                                                                                                
3:35:12 PM                                                                                                                    
SENATOR  HUGHES  asked  whether  Medicaid  covers  these  medical                                                               
services.                                                                                                                       
                                                                                                                                
3:35:51 PM                                                                                                                    
SENATOR GRAY-JACKSON replied that she wasn't sure.                                                                              
                                                                                                                                
3:36:06 PM                                                                                                                    
CHAIR DUNBAR asked Ms. Brubaker  to answer the question and offer                                                               
testimony.                                                                                                                      
                                                                                                                                
3:36:16 PM                                                                                                                    
EMILY BRUBAKER,  representing self, Anchorage,  Alaska, testified                                                               
by  invitation on  SJR 16.  She answered  that Medicaid  does not                                                               
cover  the   specific  medical   services  for   rare  congenital                                                               
anomalies. She  said these  services are  viewed as  cosmetic and                                                               
unnecessary.  She continued  with her  testimony stating  that at                                                               
the age  of two she was  diagnosed with a genetic  condition that                                                               
affects teeth, hair and skin.                                                                                                   
                                                                                                                                
3:37:17 PM                                                                                                                    
At ease.                                                                                                                        
                                                                                                                                
3:37:26 PM                                                                                                                    
CHAIR DUNBAR reconvened the meeting.                                                                                            
                                                                                                                                
3:37:43 PM                                                                                                                    
MS.  BRUBAKER  stated  that  she  will  require  numerous  dental                                                               
procedures, with  estimated out-of-pocket costs  of approximately                                                               
$100,000.  The Ensuring  Lasting  Smiles Act  (ELSA) would  amend                                                               
federal  law  to  require private  insurers  to  cover  medically                                                               
necessary  procedures   for  individuals  with   rare  congenital                                                               
anomalies, significantly reducing this  burden. She said that she                                                               
has  actively advocated  for ELSA  since childhood,  traveling to                                                               
Washington,  D.C.  multiple  times  and  engaging  with  Alaska's                                                               
congressional delegation.  The legislation passed the  U.S. House                                                               
with a  bipartisan supermajority  in the  117th Congress  and did                                                               
not advance in the Senate.  She said she hopes for reintroduction                                                               
in the 119th  Congress. She said with growing  national and local                                                               
support,  including the  Anchorage  Assembly, ELSA  would have  a                                                               
profound impact on families across Alaska and the nation.                                                                       
                                                                                                                                
3:40:20 PM                                                                                                                    
SENATOR  GRAY-JACKSON  thanked  the  committee  for  hearing  the                                                               
resolution.                                                                                                                     
                                                                                                                                
3:40:38 PM                                                                                                                    
CHAIR DUNBAR held SJR 16 in committee.