04/23/2024 03:00 PM House STATE AFFAIRS

              SB 256-ESTABLISH ALS AWARENESS MONTH                                                                          
                                                                                                                                
3:09:51 PM                                                                                                                    
                                                                                                                                
CHAIR SHAW  announced that the  first order of business  would be                                                               
SENATE  BILL NO.  256, "An  Act establishing  May as  Amyotrophic                                                               
Lateral  Sclerosis   Awareness  Month;   and  providing   for  an                                                               
effective date."                                                                                                                
                                                                                                                                
3:10:14 PM                                                                                                                    
                                                                                                                                
The committee took a brief at-ease at 3:10 p.m.                                                                                 
                                                                                                                                
3:10:42 PM                                                                                                                    
                                                                                                                                
JOE   HAYES,  Staff,   Senator  Scott   Kawasaki,  Alaska   State                                                               
Legislature,  presented SB  256  on behalf  of Senator  Kawasaki,                                                               
prime sponsor.   He read from the sponsor  statement [included in                                                               
the   committee  packet],   which  read   as  follows   [original                                                               
punctuation provided]:                                                                                                          
                                                                                                                                
         The month of May is recognized as National ALS                                                                         
       Awareness Month. ALS is also known as Amyotrophic                                                                        
     Lateral  Sclerosis or  Lou  Gehrig's  disease. ALS  was                                                                    
     first  identified  in 1869.  In  the  155 years  since,                                                                    
     there is still no effective treatment and no cure.                                                                         
                                                                                                                                
     ALS  is a  neurodegenerative disease  that affects  the                                                                    
     nerve cells in  the brain and spinal  cord that control                                                                    
     voluntary muscle movement and  breathing. ALS is a 100%                                                                    
     fatal disease. There is no cure for ALS.                                                                                   
                                                                                                                                
     ALS  is a  rare disease,  affecting approximately  5 in                                                                    
     100,000  people.  Approximately  30,000 people  in  the                                                                    
     United  States  are  currently   living  with  ALS  and                                                                    
     approximately 60 people in  Alaska are currently living                                                                    
     with ALS. 90  % of patients diagnosed with  ALS have no                                                                    
     family history  of disease. Only  10% of  patients have                                                                    
     familial/hereditary ALS.                                                                                                   
                                                                                                                                
     ALS may  strike at  any age, but  most people  who have                                                                    
     ALS  are  between 40-70.  There  are  currently only  3                                                                    
     medications that  slow the progression of  ALS, and one                                                                    
     medication  that  targets  familial  ALS  specifically.                                                                    
     These medications only extend  life expectancy by a few                                                                    
     months.                                                                                                                    
                                                                                                                                
     ALS  causes the  motor neurons  in the  central nervous                                                                    
     system to degenerate over time  and die. This affects a                                                                    
     person's  ability to  talk, walk,  and breathe.  People                                                                    
     with ALS  will eventually lose their  ability to speak,                                                                    
     become  paralyzed, and  lose the  ability to  breath on                                                                    
     their   own.   ALS   patients  die   from   respiratory                                                                    
     failure.ponsor [sic]                                                                                                       
                                                                                                                                
     The  mean survival  for someone  diagnosed with  ALS is                                                                    
     two  to  five  years.   Every  90  minutes  someone  is                                                                    
     diagnosed with  ALS, and every 90  minutes someone dies                                                                    
     from it.  Veterans are 1 ½  to 2 time more  likely than                                                                    
     non-service members to be diagnosed  with ALS. There is                                                                    
     no single  test to diagnose  ALS, it is  diagnosed only                                                                    
     after numerous other conditions  have been ruled out (a                                                                    
     delayed  diagnosis results  in delayed  treatment/start                                                                    
     on medications). It  can take a patient over  a year to                                                                    
     get an ALS diagnosis.                                                                                                      
                                                                                                                                
     ALS symptoms vary.  In limb onset ALS,  it may manifest                                                                    
     as weakness  in a patient's  hand or foot, arm  or leg.                                                                    
     In  bulbar  onset  ALS,  it  may  manifest  as  trouble                                                                    
     speaking  or swallowing.  There currently  is no  known                                                                    
     cause of ALS.  100% of ALS patients are  unaware of the                                                                    
     cause of their  disease. Why is ALS  Awareness month in                                                                    
     Alaska important?                                                                                                          
                                                                                                                                
     ALS Awareness is important  on numerous levels. Raising                                                                    
     awareness of this disease and  the need for funding for                                                                    
     research  to  help  discover  a  treatment  that  stops                                                                    
     progression of  ALS (and hopefully one  day a treatment                                                                    
     that will  reverse the damage  caused by  ALS). Raising                                                                    
     awareness  so more  doctors are  aware of  ALS and  its                                                                    
     symptoms,  leading  to  an earlier  diagnosis.  Raising                                                                    
     awareness  to increase  funding  for  ALS care.  Alaska                                                                    
     does not  have a single neurologist  who specializes in                                                                    
     ALS and does not have  an ALS care clinic. ALS patients                                                                    
     in  Alaska (who  are not  paralyzed yet  by it  and are                                                                    
     still  able to  travel)  have to  travel  out of  state                                                                    
     every  three months  to visit  their  ALS Care  Clinic,                                                                    
     which  is   a  team   (consisting  of   a  neurologist,                                                                    
     respiratory     therapist,      speech     pathologist,                                                                    
     physical/occupational   therapist,  nutritionist)   who                                                                    
     special in  ALS care  and work with  patient on  a care                                                                    
     plan  to  help  manage ALS  symptoms.  Lastly,  raising                                                                    
     awareness about what ALS is  and shining a light on the                                                                    
     people who  are battling  this disease is  important to                                                                    
     help bring understanding to the challenge.                                                                                 
                                                                                                                                
3:14:29 PM                                                                                                                    
                                                                                                                                
MR. HAYES gave the sectional analysis for SB 256 [included in                                                                   
the committee packet], which read as follows [original                                                                          
punctuation provided]:                                                                                                          
                                                                                                                                
     "An  act   establishing  May  as   Amyotrophic  Lateral                                                                    
     Sclerosis  Awareness   month;  and  providing   for  an                                                                    
     effective date."                                                                                                           
                                                                                                                                
     Section  1. Amends  AS 44.12  to add  a new  section to                                                                    
     article 2  to read: Sec. 44.12.190  Amyotrophic Lateral                                                                    
     Awareness Month.                                                                                                           
                                                                                                                                
     Section 2.  Creates an  immediate effective  date under                                                                    
     AS 01.10.070(c).                                                                                                           
                                                                                                                                
3:15:01 PM                                                                                                                    
                                                                                                                                
CHAIR SHAW announced the committee would hear invited testimony.                                                                
                                                                                                                                
3:15:15 PM                                                                                                                    
                                                                                                                                
BROOK LAVENDER, Care Services  Coordinator, ALS Association, gave                                                               
invited testimony  in support  of SB  256, which  would establish                                                               
May as  the awareness month for  ALS.  She provided  a background                                                               
on the disease and that she  was impacted personally by ALS.  She                                                               
said that living in Alaska, she  wished to do her part in raising                                                               
awareness  for the  condition, and  she  provided backgrounds  of                                                               
those close  to her  who battled  the disease.   She  pointed out                                                               
pressing issues  such as  delays in diagnosis  and how  short the                                                               
disease  duration   is.     There  is  also   an  absence   of  a                                                               
multidisciplinary clinic  in the state,  she said, and  this void                                                               
compels  those who  are suffering  from the  disease to  relocate                                                               
elsewhere.  She  said the bill presents a  crucial opportunity to                                                               
address this pressing need and  raise awareness in the state, and                                                               
it would honor  the memory of those  lost to ALS.   She urged the                                                               
committee to support SB 256.                                                                                                    
                                                                                                                                
3:18:40 PM                                                                                                                    
                                                                                                                                
MICHELLE FOLEY, representing self,  thanked the committee for the                                                               
opportunity to  testify in support of  SB 256.  She  provided her                                                               
history from the  time she was diagnosed with ALS.   [Ms. Foley's                                                               
testimony is truncated because of poor audio quality.]                                                                          
                                                                                                                                
3:24:55 PM                                                                                                                    
                                                                                                                                
CHAIR SHAW opened public testimony on SB 256.                                                                                   
                                                                                                                                
3:25:06 PM                                                                                                                    
                                                                                                                                
KATHERYN DIETRICH, representing self,  testified in support of SB
.    She  noted  that  she is  good  friends  with  the  prior                                                               
testifier  and  witnessed  the   devastation  ALS  caused.    She                                                               
stressed the  importance of  being able  to hasten  the diagnosis                                                               
and anything that  can be done such as passing  SB 256 would help                                                               
to  raise awareness.   She  related that  three acquaintances  of                                                               
hers had  ALS and  that the  disease can happen  to anyone.   She                                                               
expressed  concern  that even  doctors  are  unaware of  all  the                                                               
symptoms to be able to diagnose  it early.  She urged the passing                                                               
of SB 256.                                                                                                                      
                                                                                                                                
3:26:51 PM                                                                                                                    
                                                                                                                                
CHAIR SHAW,  after ascertaining  no one  else wished  to testify,                                                               
closed public testimony on SB 256.                                                                                              
                                                                                                                                
3:27:06 PM                                                                                                                    
                                                                                                                                
SENATOR  SCOTT  KAWASAKI,  Alaska  State  Legislature,  as  prime                                                               
sponsor of SB 256, offered  closing comments and some facts about                                                               
ALS.    He  thanked  the   committee  for  hearing  the  proposed                                                               
legislation.                                                                                                                    
                                                                                                                                
3:28:13 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE WRIGHT  moved to  report SB  256 out  of committee                                                               
with  individual  recommendations  and  the  accompanying  fiscal                                                               
notes.  There being no objection,  SB 256 was reported out of the                                                               
House State Affairs Standing Committee.