Legislature(2017 - 2018)CAPITOL 106

03/02/2017 03:00 PM HEALTH & SOCIAL SERVICES

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Audio Topic
03:10:16 PM Start
03:10:52 PM HB123
04:00:30 PM HB43
04:27:39 PM Presentation: Key Coalition
05:07:31 PM Adjourn
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
*+ HB 123 DISCLOSURE OF HEALTH CARE COSTS TELECONFERENCED
Heard & Held
-- Testimony <Invitation Only> --
+= HB 43 NEW DRUGS FOR THE TERMINALLY ILL TELECONFERENCED
Heard & Held
-- Testimony <Public/Invited> --
+ Presentation: Key Coalition of AK 2017 TELECONFERENCED
Legislative Priorities
+ Bills Previously Heard/Scheduled TELECONFERENCED
                    ALASKA STATE LEGISLATURE                                                                                  
      HOUSE HEALTH AND SOCIAL SERVICES STANDING COMMITTEE                                                                     
                         March 2, 2017                                                                                          
                           3:10 p.m.                                                                                            
                                                                                                                                
MEMBERS PRESENT                                                                                                               
                                                                                                                                
Representative Ivy Spohnholz, Chair                                                                                             
Representative Geran Tarr                                                                                                       
Representative David Eastman                                                                                                    
Representative Jennifer Johnston                                                                                                
Representative Colleen Sullivan-Leonard                                                                                         
Representative Matt Claman (alternate)                                                                                          
Representative Dan Saddler (alternate)                                                                                          
                                                                                                                                
MEMBERS ABSENT                                                                                                                
                                                                                                                                
Representative Bryce Edgmon, Vice Chair                                                                                         
Representative Sam Kito                                                                                                         
                                                                                                                                
COMMITTEE CALENDAR                                                                                                            
                                                                                                                                
HOUSE BILL NO. 123                                                                                                              
"An Act relating to disclosure of health care services and price                                                                
information; and providing for an effective date."                                                                              
                                                                                                                                
     - HEARD & HELD                                                                                                             
                                                                                                                                
HOUSE BILL NO. 43                                                                                                               
"An Act  relating to  prescribing, dispensing,  and administering                                                               
an  investigational  drug,  biological   product,  or  device  by                                                               
physicians  for  patients  who   are  terminally  ill;  providing                                                               
immunity  related to  manufacturing,  distributing, or  providing                                                               
investigational  drugs,  biological  products,  or  devices;  and                                                               
relating to licensed health care facility requirements."                                                                        
                                                                                                                                
     - HEARD & HELD                                                                                                             
                                                                                                                                
PRESENTATION: KEY COALITION                                                                                                     
                                                                                                                                
     - HEARD                                                                                                                    
                                                                                                                                
PREVIOUS COMMITTEE ACTION                                                                                                     
                                                                                                                                
BILL: HB 123                                                                                                                  
SHORT TITLE: DISCLOSURE OF HEALTH CARE COSTS                                                                                    
SPONSOR(s): REPRESENTATIVE(s) SPOHNHOLZ                                                                                         
                                                                                                                                
02/13/17       (H)       READ THE FIRST TIME - REFERRALS                                                                        
02/13/17       (H)       HSS, JUD                                                                                               
03/02/17       (H)       HSS AT 3:00 PM CAPITOL 106                                                                             
                                                                                                                                
BILL: HB 43                                                                                                                   
SHORT TITLE: NEW DRUGS FOR THE TERMINALLY ILL                                                                                   
SPONSOR(s): REPRESENTATIVE(s) GRENN                                                                                             
                                                                                                                                
01/18/17       (H)       PREFILE RELEASED 1/13/17                                                                               
01/18/17       (H)       READ THE FIRST TIME - REFERRALS                                                                        
01/18/17       (H)       HSS, JUD                                                                                               
02/28/17       (H)       HSS AT 3:00 PM CAPITOL 106                                                                             
02/28/17       (H)       Heard & Held                                                                                           
02/28/17       (H)       MINUTE(HSS)                                                                                            
03/02/17       (H)       HSS AT 3:00 PM CAPITOL 106                                                                             
                                                                                                                                
WITNESS REGISTER                                                                                                              
                                                                                                                                
BERNICE NISBETT, Staff                                                                                                          
Representative Ivy Spohnholz                                                                                                    
Alaska State Legislature                                                                                                        
Juneau, Alaska                                                                                                                  
POSITION STATEMENT:  Testified during the presentation of HB                                                                  
123, on behalf of the bill sponsor, Representative Spohnholz.                                                                   
                                                                                                                                
JILL LEWIS, Deputy Director - Juneau                                                                                            
Central Office                                                                                                                  
Division of Public Health                                                                                                       
Department of Health and Social Services                                                                                        
Juneau, Alaska                                                                                                                  
POSITION STATEMENT:  Answered questions during presentation of                                                                
HB 123.                                                                                                                         
                                                                                                                                
BECKY HULTBERG, President/CEO                                                                                                   
Alaska State Hospital and Nursing Home Association                                                                              
Juneau, Alaska                                                                                                                  
POSITION STATEMENT:  Testified and answered questions during the                                                              
presentation of HB 123.                                                                                                         
                                                                                                                                
JOHN ZASADA                                                                                                                     
Policy Integration Director                                                                                                     
Alaska Primary Care Association (APCA)                                                                                          
Anchorage, Alaska                                                                                                               
POSITION STATEMENT:  Testified during discussion of HB 123.                                                                   
                                                                                                                                
BROOKE IVY, Staff                                                                                                               
Representative Jason Grenn                                                                                                      
Alaska State Legislature                                                                                                        
Juneau, Alaska                                                                                                                  
POSITION STATEMENT:  Presented HB 43 on behalf of the bill                                                                    
sponsor, Representative Grenn.                                                                                                  
                                                                                                                                
KEN LANDFIELD                                                                                                                   
Homer, Alaska                                                                                                                   
POSITION STATEMENT:  Testified in support of HB 43.                                                                           
                                                                                                                                
ELIZABETH KROME, Nurse                                                                                                          
Wasilla, Alaska                                                                                                                 
POSITION STATEMENT:  Testified in support of HB 43.                                                                           
                                                                                                                                
MIKE MAHARREY                                                                                                                   
National Communications Director                                                                                                
Tenth Amendment Center                                                                                                          
Lexington, Kentucky                                                                                                             
POSITION STATEMENT:  Testified in support of HB 43.                                                                           
                                                                                                                                
JASON NORRIS                                                                                                                    
Anchorage, Alaska                                                                                                               
POSITION STATEMENT:  Testified in support of HB 43.                                                                           
                                                                                                                                
MILLIE RYAN, Chair                                                                                                              
Key Coalition of Alaska                                                                                                         
Executive Director                                                                                                              
REACH, Inc.                                                                                                                     
Juneau, Alaska                                                                                                                  
POSITION STATEMENT:  Testified during the Key Campaign                                                                        
presentation.                                                                                                                   
                                                                                                                                
EMILY ENNIS, Executive Director                                                                                                 
Fairbanks Resource Agency                                                                                                       
Key Coalition of Alaska                                                                                                         
Fairbanks, Alaska                                                                                                               
POSITION STATEMENT:  Testified during the Key Campaign                                                                        
presentation.                                                                                                                   
                                                                                                                                
ADDISON TURNBOW                                                                                                                 
Fairbanks, Alaska                                                                                                               
POSITION STATEMENT:  Testified during the Key Campaign                                                                        
presentation.                                                                                                                   
                                                                                                                                
SHELLY VENDETTI VUCKOVICH                                                                                                       
POSITION STATEMENT:  Testified during the Key Campaign                                                                        
presentation.                                                                                                                   
                                                                                                                                
ALLEN RAY                                                                                                                       
Simply Home                                                                                                                     
Arden, North Carolina                                                                                                           
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
JASON RAY                                                                                                                       
Simply Home                                                                                                                     
Arden, North Carolina                                                                                                           
POSITION   STATEMENT:     Testified  during   the  Key   Campaign                                                             
presentation.                                                                                                                   
                                                                                                                                
ACTION NARRATIVE                                                                                                              
                                                                                                                                
3:10:16 PM                                                                                                                    
                                                                                                                                
CHAIR IVY SPOHNHOLZ  called the House Health  and Social Services                                                             
Standing   Committee    meeting   to    order   at    3:10   p.m.                                                               
Representatives Spohnholz, Tarr,  Johnston and Claman (alternate)                                                               
were present  at the  call to  order.   Representatives Sullivan-                                                               
Leonard, Eastman, and Saddler (alternate)  arrived as the meeting                                                               
was in progress.                                                                                                                
                                                                                                                                
             HB 123-DISCLOSURE OF HEALTH CARE COSTS                                                                         
                                                                                                                                
3:10:52 PM                                                                                                                    
                                                                                                                                
CHAIR SPOHNHOLZ announced that the  first order of business would                                                               
be HOUSE BILL  NO. 123, "An Act relating to  disclosure of health                                                               
care  services  and  price  information;  and  providing  for  an                                                               
effective date."                                                                                                                
                                                                                                                                
3:11:50 PM                                                                                                                    
                                                                                                                                
CHAIR  SPOHNHOLZ, as  the sponsor  of proposed  HB 123,  declared                                                               
that "knowledge is  power."  She stated that health  care was the                                                               
only  industry in  which the  consumers  did not  know the  price                                                               
prior  to the  purchase or  utilization of  services.   She noted                                                               
that this  was the removal of  "one of the fundamental  tenets of                                                               
capitalism, that  is the  power of the  consumer to  make choices                                                               
about  what they  do or  they don't  purchase."   She offered  an                                                               
example  for a  colleague who  had  sustained an  injury and  the                                                               
subsequent  expensive testing  and  recommended  treatment.   She                                                               
shared that, after the testing,  the colleague had questioned the                                                               
need for  the test,  as the  test had not  altered the  course of                                                               
treatment.   She shared  that proposed  HB 123  provided consumer                                                               
pricing  transparency which  was simple  and clean  to implement,                                                               
without adding any additional cost to the state.                                                                                
                                                                                                                                
3:14:32 PM                                                                                                                    
                                                                                                                                
BERNICE  NISBETT,  Staff,  Representative Ivy  Spohnholz,  Alaska                                                               
State Legislature,  stated that the  intent of the  bill sponsor,                                                               
Representative Spohnholz, was to  create a foundation to increase                                                               
price  transparency in  health care  in  Alaska.   She said  that                                                               
transparency  and  access  to health  care  costs  would  empower                                                               
consumers to take more financial  responsibility for their health                                                               
care.  She explained that  the proposed bill required health care                                                               
providers and  facilities to display  the undiscounted  prices of                                                               
their most common health care procedures  in a public area, or on                                                               
their  website.   She  declared that  it was  the  intent of  the                                                               
sponsor  to  require  health care  providers  to  disclose  their                                                               
costs, but  not make it  burdensome to provide  this information.                                                               
She relayed that  this was important, as when  consumers had this                                                               
information, it would give them  the power to choose their health                                                               
care options.   It would  also open more  conversations regarding                                                               
high health  care costs  in Alaska and  consumer control  for the                                                               
health care market.                                                                                                             
                                                                                                                                
3:16:01 PM                                                                                                                    
                                                                                                                                
MS.  NISBETT   directed  attention  to  the   Sectional  Analysis                                                               
[Included in members'  packets] and explained that  Section 1 was                                                               
expanded  to  authorize  the  Department  of  Health  and  Social                                                               
Services   (DHSS)   to   collect  health   services   and   price                                                               
information.  She  stated that Section 2 was "really  the meat of                                                               
the  bill," it  was a  new section  which said  that health  care                                                               
providers and facilities would compile  a list of the most common                                                               
procedures along  with the undiscounted  price.  This  list would                                                               
be compiled once each year, and be  posted in a public area or on                                                               
the provider's website,  as well as provided to  DHSS for posting                                                               
on the departmental  website.  She added that  failure to provide                                                               
these  costs could  result  in  a fine,  which  shall not  exceed                                                               
$2500.   She reported  that the effective  date for  the proposed                                                               
bill would be January 1, 2018.                                                                                                  
                                                                                                                                
3:17:50 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE SULLIVAN-LEONARD  asked for an explanation  to the                                                               
zero fiscal  note, as  there would be  increased labor  costs for                                                               
maintenance of  the DHSS data base  and the levying of  any fines                                                               
for failure to comply.                                                                                                          
                                                                                                                                
MS. NISBETT replied that the zero fiscal note was from DHSS.                                                                    
                                                                                                                                
CHAIR SPOHNHOLZ explained that the  proposed bill did not require                                                               
a data base,  as the information would merely be  uploaded to the                                                               
department's website.   She added  that DHS had stated  that this                                                               
could be absorbed into the regular work load.                                                                                   
                                                                                                                                
REPRESENTATIVE JOHNSTON  asked if  there was a  subjective nature                                                               
to the 25 procedures required to be listed.                                                                                     
                                                                                                                                
CHAIR SPOHNHOLZ replied  that the decision to  require listing of                                                               
25 procedures for individual practitioners  and 50 procedures for                                                               
hospitals was to keep the  requirement from becoming too onerous.                                                               
She  opined  that  this  was  a practical  number  for  the  most                                                               
frequently offered services, although this number was flexible.                                                                 
                                                                                                                                
REPRESENTATIVE  JOHNSTON  asked  if each  facility  would  decide                                                               
which of these procedures were the most frequent.                                                                               
                                                                                                                                
REPRESENTATIVE  SULLIVAN-LEONARD  asked   for  further  testimony                                                               
regarding the fiscal note from DHSS.                                                                                            
                                                                                                                                
3:20:49 PM                                                                                                                    
                                                                                                                                
JILL LEWIS,  Deputy Director -  Juneau, Central  Office, Division                                                               
of  Public  Health, Department  of  Health  and Social  Services,                                                               
explained that  the determination for implementation  was simple,                                                               
that DHSS would  accept PDF versions of the cost  lists and these                                                               
would   be   posted   as-is   to   the   website,   most   likely                                                               
alphabetically.  She  declared that DHSS did  not anticipate much                                                               
enforcement, as they expected a good participation rate.                                                                        
                                                                                                                                
3:22:13 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  SADDLER questioned  whether the  state should  be                                                               
involved  in   these  private  transactions.     He   asked  what                                                               
information was  to be  disclosed, stored,  and promulgated.   He                                                               
asked  if  the  listing  would  reflect  the  price  for  someone                                                               
"walking the streets."                                                                                                          
                                                                                                                                
MS.  NISBETT  replied  that  the  definition  for  price  in  the                                                               
proposed bill  would be  for the  undiscounted price,  before any                                                               
negotiations.   She called this  "the charged master  price" that                                                               
each facility and provider set for themselves.                                                                                  
                                                                                                                                
REPRESENTATIVE SPOHNHOLZ, in  response to Representative Saddler,                                                               
pointed out  that government  should enter  into this  to protect                                                               
consumers, as the market itself had not done this.                                                                              
                                                                                                                                
3:23:56 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  CLAMAN asked  why  it was  only the  undiscounted                                                               
price, and not the other prices which were published.                                                                           
                                                                                                                                
MS. NISBETT replied that this was  an attempt to keep the bill as                                                               
simple  as possible,  and  that this  price could  be  used as  a                                                               
reference point.                                                                                                                
                                                                                                                                
REPRESENTATIVE CLAMAN  asked if  there were  any limits,  such as                                                               
confidentiality  with insurance  companies, which  would prohibit                                                               
the disclosure of prices.                                                                                                       
                                                                                                                                
MS. NISBETT said that, although it  would be in the best interest                                                               
to  include the  insurance costs,  the  bill would  focus on  the                                                               
undiscounted price to allow consumers to make a decision.                                                                       
                                                                                                                                
REPRESENTATIVE SADDLER asked how the pricing currently worked.                                                                  
                                                                                                                                
MS. NISBETT  replied that the intent  of the sponsor was  for the                                                               
consumer  to have  this  price information  prior  to entering  a                                                               
clinic to receive services.                                                                                                     
                                                                                                                                
REPRESENTATIVE  SADDLER acknowledged  that  most consumers  would                                                               
like  to  have  the  cost  information,  although  he  questioned                                                               
whether there  was other information  which made it  difficult to                                                               
attain a fair price.                                                                                                            
                                                                                                                                
REPRESENTATIVE SPOHNHOLZ acknowledged that  there was a challenge                                                               
for health  care pricing as there  was not a clear  agreement for                                                               
what was a  fair price.  As  there was a wide range  for what was                                                               
actually paid,  she had  opted for simplicity  and asked  for the                                                               
undiscounted price  as there were  so many  different variations.                                                               
She  stated that  there needed  to be  a pricing  starting point.                                                               
She relayed  that the proposed  bill stated that  the information                                                               
would be  posted in  a public  place in  the doctor's  office, as                                                               
well  as on  the website,  and on  the Department  of Health  and                                                               
Social  Services' website.   She  stated that  there was  not one                                                               
price that everyone  paid, and although an all  payers price list                                                               
had been suggested, it had been ruled untenable due to the cost.                                                                
                                                                                                                                
REPRESENTATIVE SULLIVAN-LEONARD  asked if, as the  prices were to                                                               
be  posted, this  would open  the door  for patients  to ask  for                                                               
discounts on particular procedures.                                                                                             
                                                                                                                                
MS. NISBETT said "yes."                                                                                                         
                                                                                                                                
3:30:59 PM                                                                                                                    
                                                                                                                                
BECKY HULTBERG, President/CEO, Alaska  State Hospital and Nursing                                                               
Home Association,  stated that this  was an important  issue, and                                                               
that it had  been raised frequently in the past  few months.  She                                                               
expressed appreciation  for the  simplicity of the  proposed bill                                                               
and its goal  for avoiding additional administrative  costs.  She                                                               
stated  support  for  the  concept   of  price  transparency  and                                                               
consumer engagement in health care  decision making.  She relayed                                                               
that  the  structure of  the  health  care payment  and  delivery                                                               
system was  complicated, which made price  transparency difficult                                                               
to  implement,   even  when  all   the  parties  agreed   on  the                                                               
desirability.    She  declared  that it  was  important  to  have                                                               
realistic  expectations   for  the  accomplishments   from  price                                                               
transparency.  She  pointed out that economic  theory and reality                                                               
supported the idea that most  consumers were only price sensitive                                                               
and engaged  in price shopping  up to the point  of out-of-pocket                                                               
exposure.   She  declared that  low deductibles  and low  out-of-                                                               
pocket maximums meant that most  customers would not be concerned                                                               
with price  transparency.  She  reported that most  public health                                                               
care plans in Alaska were  maintaining relatively low deductibles                                                               
and  out-of-pocket  maximums,  while private  sector  plans  were                                                               
moving toward  higher deductibles.   She pointed out that  it was                                                               
often the  insurer with access to  the best data.   She suggested                                                               
that successful transparency  initiatives sometimes also included                                                               
an insurance  component, which she  encouraged as an  addition to                                                               
the proposed legislation.   She reported that some  of the larger                                                               
insurers  in Alaska  already  offered  price transparency  tools.                                                               
She stated  that undiscounted prices  were a reference  point, as                                                               
most consumers  were not  paying this price.   She  reported that                                                               
insurers paid rates based  on contractually negotiated discounts,                                                               
and self-pay and  charity care discounts were  also often offered                                                               
to patients without health insurance.   She recommended to delete                                                               
the words "charged to an  individual recipient" from the language                                                               
of the proposed bill.  She  noted that the proposed bill required                                                               
that the list be compiled by  procedure and diagnostic code.  She                                                               
explained that  diagnostic codes were very  specific, there could                                                               
be many  different codes  for a procedure,  and she  suggested to                                                               
instead  just use  the  procedure code  which  she opined  should                                                               
accomplish  the  objective.   She  suggested  that, as  DHSS  was                                                               
required  to  post the  pricing  information  on its  centralized                                                               
website,  it would  be duplicative  for  individual providers  to                                                               
also post this  information, and she recommended  removal of this                                                               
requirement for providers.   She asked that  the sponsor consider                                                               
a change of  the requirement for posting the price  list, to just                                                               
make the list available.  She  offered her belief that this could                                                               
stimulate conversation  for the consumer  cost.  She  stated that                                                               
health care price transparency was  a very complex topic, and she                                                               
expressed her appreciation for the discussion.                                                                                  
                                                                                                                                
3:36:05 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE  TARR  asked whether  there  were  efforts in  any                                                               
other states and if these suggestions were in line with those.                                                                  
                                                                                                                                
MS. HULTBERG replied  that states had different  frameworks.  She                                                               
added that the all payer claims  data base was the gold standard,                                                               
albeit the most  expensive option.  She allowed  that some states                                                               
had  chosen an  approach similar  to the  proposed bill,  whereas                                                               
some  states had  mandated  that  providers offer  individualized                                                               
estimates.    She   declared  that  this  proposed   bill  was  a                                                               
foundation and  a step to  elevate the attention and  improve the                                                               
provision for pricing information.                                                                                              
                                                                                                                                
MS.  HULTBERG,  in response  to  Representative  Tarr, said  that                                                               
generating a conversation between  [the patient] and the provider                                                               
was optimal.   She  mused that having  the price  list available,                                                               
but not posted, would generate  a conversation.  She acknowledged                                                               
that there was not a perfect  solution to this "Gordian knot of a                                                               
problem."                                                                                                                       
                                                                                                                                
REPRESENTATIVE SADDLER  asked about the current  transparency for                                                               
health care costs in Alaska.                                                                                                    
                                                                                                                                
MS.  HULTBERG said  that  this  depended on  the  provider.   She                                                               
stated that  hospital prices were  very difficult  to understand,                                                               
as  there  were layers  of  discounts,  deductibles, and  out-of-                                                               
pocket  costs.   She reported  that the  hospitals were  insuring                                                               
that staff  were available to  help navigate the system  and find                                                               
out the prices.  She  acknowledged that, although it was possible                                                               
to  find the  price,  it was  also difficult.    She offered  her                                                               
belief that  the challenge  was to make  it less  difficult given                                                               
the structure of the system.                                                                                                    
                                                                                                                                
REPRESENTATIVE   SADDLER   asked   if  price   transparency   was                                                               
beneficial or detrimental to the hospitals and nursing homes.                                                                   
                                                                                                                                
MS.  HULTBERG expressed  agreement  that  price transparency  was                                                               
optimal, more information  was better for the system  and for the                                                               
consumer.   She questioned how to  do this, given how  the health                                                               
system had  evolved for  the past 40  years, without  adding cost                                                               
and still helping the consumer.   She stated that there was not a                                                               
philosophical difference regarding the  good of transparency, but                                                               
the difficulty was in how to do it.                                                                                             
                                                                                                                                
REPRESENTATIVE  CLAMAN asked  if the  discounted insurance  rates                                                               
were published  in all states, and  if it was possible  for these                                                               
proprietary rates to also be published.                                                                                         
                                                                                                                                
MS. HULTBERG said  she would have to ask  about this feasibility.                                                               
She shared  that many insurers  and large employers had  tools to                                                               
help find the  prices and find the most cost  effective option in                                                               
each  area.   She  agreed  that, as  not  everyone offered  these                                                               
tools,  there was  some value  in posting  prices as  a reference                                                               
point for those patients without insurance.                                                                                     
                                                                                                                                
REPRESENTATIVE   EASTMAN  expressed   his   agreement  with   the                                                               
philosophy, and asked  whether the proposed bill  captured a good                                                               
process for transition or could be improved.                                                                                    
                                                                                                                                
MS. HULTBERG offered her belief that  "the beauty in this bill is                                                               
the simplicity.   I do not  think this would be  a difficult bill                                                               
for  us  to administer."    She  stated  that  she did  not  have                                                               
concerns, at this point, for the transition.                                                                                    
                                                                                                                                
REPRESENTATIVE SADDLER  mentioned capital and  operating expenses                                                               
as elements of  pricing, and asked what other  elements of health                                                               
care services could affect any  change in pricing if the proposed                                                               
bill was passed.                                                                                                                
                                                                                                                                
MS. HULTBERG  suggested that a  PhD in health care  economics was                                                               
helpful in  pricing.  She  stated that it  was too early  to tell                                                               
about the  price transparency initiatives and  whether they would                                                               
lower costs.                                                                                                                    
                                                                                                                                
REPRESENTATIVE JOHNSTON  asked about  a national site  for health                                                               
care costs, and the possible use of its data.                                                                                   
                                                                                                                                
MS. HULTBERG replied that there  was a national move toward price                                                               
transparency.  She shared that,  as the undiscounted charges were                                                               
not what  most people paid, it  was important for the  insurer to                                                               
be  able to  determine  the actual  out-of-pocket  expense.   She                                                               
emphasized the need  for the patient to call the  insurer and the                                                               
provider to verify the procedures,  the co-pay, the out-of-pocket                                                               
costs, and whether the provider was in-network.                                                                                 
                                                                                                                                
3:46:33 PM                                                                                                                    
                                                                                                                                
JOHN  ZASADA, Policy  Integration Director,  Alaska Primary  Care                                                               
Association (APCA),  explained that  APCA was the  association of                                                               
community health centers  in Alaska and was required,  by law, to                                                               
accept patients regardless of ability  to pay.  He explained that                                                               
there was a sliding scale discount  based on income.  He declared                                                               
support for increased price transparency  and added that patients                                                               
were engaged  and educated on  the ways  to use the  care options                                                               
and coverage available.   He reported that  Alaska health centers                                                               
mostly  provided  patients  with   an  estimate  of  charges  for                                                               
particular procedures, upon  request, and that a  large number of                                                               
the health centers  had expressed an ability to  compile and post                                                               
a list of  prices for the most common procedures,  as outlined in                                                               
the  proposed   bill.    He   expressed  concern   for  effective                                                               
explanation  regarding the  discounts  on the  sliding scale,  so                                                               
patients  understood  what  they  had  to  pay.    He  said  that                                                               
federally qualified  health centers had a  unique bundled payment                                                               
system, and that  the rack rate was often higher  than what would                                                               
be posted  with a private primary  care provider.  He  shared the                                                               
concern by health centers that  the requirement to post prices on                                                               
the health center websites may  have an unintended consequence to                                                               
serve as  a barrier for coming  to seek care, especially  for low                                                               
and moderate  income patients and  people for whom English  was a                                                               
second  language,  as  the  sliding   scale  discount  was  often                                                               
presented at the time of  appointment.  He suggested that posting                                                               
the  price list  at the  facility, along  with support  to better                                                               
understand  the actual  cost  to the  individual,  might be  more                                                               
effective for ensuring maximum access to care.                                                                                  
                                                                                                                                
3:49:53 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE CLAMAN  asked about making available  the listings                                                               
for the negotiated prices.                                                                                                      
                                                                                                                                
MR.  ZASADA  explained  that  80   percent  of  the  patients  at                                                               
community health centers in Alaska  were at 80 percent of poverty                                                               
or below,  and that  about 33  percent had  commercial insurance,                                                               
with  another 33  percent being  uninsured.   He stated  that the                                                               
sliding scale  discount was  the primary way  to reduce  the cost                                                               
from the  main rack rate.   He  stated that eligibility  staff at                                                               
the  health  centers worked  with  the  patients to  provide  the                                                               
price, so that patients knew the cost.                                                                                          
                                                                                                                                
REPRESENTATIVE SADDLER asked if  the transparency of prices would                                                               
affect the services of community health centers in Alaska.                                                                      
                                                                                                                                
MR.  ZASADA noted  that sharing  rack  rates on  a website  could                                                               
serve  as a  barrier  to  care for  those  people without  health                                                               
insurance literacy.  He expressed  concern for potential patients                                                               
not seeking primary  and preventative care based on  a rack rate.                                                               
Other than  this, he  offered his belief  that the  proposed bill                                                               
would not dramatically affect the care offered.                                                                                 
                                                                                                                                
REPRESENTATIVE SADDLER asked for a definition of rack rate.                                                                     
                                                                                                                                
MR. ZASADA  said that  the bundled rate  from a  community health                                                               
center included  the presentation  of the  issue by  the patient,                                                               
the examination,  the procedure, the care  coordination and other                                                               
factors which were built in by the health center.                                                                               
                                                                                                                                
REPRESENTATIVE  EASTMAN asked  if  this  legislation would  allow                                                               
disclaimers for price discounts.                                                                                                
                                                                                                                                
MR.  ZASADA offered  his belief  that many  health centers  would                                                               
prefer   personal   interaction   with  a   patient   for   those                                                               
discussions,  as  understanding  for  a  sliding  scale  discount                                                               
system  was not  easily understood  via a  website.   He declared                                                               
that it  was much  easier and clearer  in person,  especially for                                                               
those with limited health insurance literacy.                                                                                   
                                                                                                                                
REPRESENTATIVE  EASTMAN  asked  if the  legislation  would  allow                                                               
this.                                                                                                                           
                                                                                                                                
MR. ZASADA  stated that  the APCA  would prefer  not to  post the                                                               
prices on the website.                                                                                                          
                                                                                                                                
REPRESENTATIVE SPOHNHOLZ asked if anyone paid the rack rate.                                                                    
                                                                                                                                
MR.  ZASADA said  that there  were some  uninsured patients  with                                                               
incomes over 200  percent [of the poverty rate]  who were subject                                                               
to the full price.  He  shared that there were also discounts for                                                               
early payment.  He acknowledged  that some people were subject to                                                               
the full price.                                                                                                                 
                                                                                                                                
MS.  HULTBERG, in  response to  the aforementioned  question from                                                               
Representative  Spohnholz, said  that  she would  follow up  with                                                               
this information.                                                                                                               
                                                                                                                                
REPRESENTATIVE SPOHNHOLZ asked why some  people would not pay the                                                               
full price.                                                                                                                     
                                                                                                                                
MS. HULTBERG replied that Alaska  State Hospital and Nursing Home                                                               
Association also used sliding scales and self-pay discounts.                                                                    
                                                                                                                                
3:56:53 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE SPOHNHOLZ said that HB 123 would be held over.                                                                   
                                                                                                                                
3:57:15 PM                                                                                                                    
                                                                                                                                
The committee took an at-ease from 3:57 p.m. to 4:00 p.m.                                                                       
                                                                                                                                
             HB 43-NEW DRUGS FOR THE TERMINALLY ILL                                                                         
                                                                                                                                
4:00:30 PM                                                                                                                    
                                                                                                                                
CHAIR SPOHNHOLZ announced  that the next order  of business would                                                               
be  HOUSE  BILL   NO.  43,  "An  Act   relating  to  prescribing,                                                               
dispensing,   and   administering    an   investigational   drug,                                                               
biological product, or device by  physicians for patients who are                                                               
terminally  ill;  providing  immunity related  to  manufacturing,                                                               
distributing,  or  providing  investigational  drugs,  biological                                                               
products,  or  devices;  and relating  to  licensed  health  care                                                               
facility requirements."                                                                                                         
                                                                                                                                
4:00:49 PM                                                                                                                    
                                                                                                                                
BROOKE  IVY,  Staff,  Representative Jason  Grenn,  Alaska  State                                                               
Legislature,  stated that  this  legislation essentially  allowed                                                               
terminally ill  patients to work  with their doctors and  drug or                                                               
device  manufacturers to  access investigational  treatments that                                                               
had passed  the safety testing  phase, Phase  1 of the  FDA (U.S.                                                               
Food and Drug  Administration) approval process, but  had not yet                                                               
passed Phase 2 and Phase 3  and were currently in ongoing trials,                                                               
hence were not yet widely available  for public access.  She said                                                               
that  this   could  expand   access  to   potentially  lifesaving                                                               
treatments  years before  normal  access.   She  stated that,  as                                                               
fewer than  3 percent of  those patients diagnosed  as terminally                                                               
ill who  tried to access  clinical trials were accepted  based on                                                               
the level of illness, this  legislation would affect the other 97                                                               
percent.   She  added that  a compassionate  use program  already                                                               
existed  with  the FDA,  which  allowed  for application  by  the                                                               
doctor, although it  was known to be a lengthy  process which did                                                               
not work well for those people with terminal illness.                                                                           
                                                                                                                                
4:02:26 PM                                                                                                                    
                                                                                                                                
REPRESENTATIVE   SADDLER  stated   that  mediation   was  already                                                               
required  between a  health  care provider  and  a patient  which                                                               
allowed for  a process of  testing and validation of  drugs which                                                               
the provider suggested.  He asked  if this was an argument for no                                                               
remediation  in  order  to  allow   a  patient  to  try  whatever                                                               
substance  they thought  would help  save their  life or  improve                                                               
their health.                                                                                                                   
                                                                                                                                
MS. IVY  replied that  the actual language  of the  proposed bill                                                               
defined  a  very  specific  situation for  someone  to  have  the                                                               
ability to access this.   She reiterated that currently there was                                                               
a compassionate use application through  the FDA, although it was                                                               
strictly  for  individuals  diagnosed as  terminally  ill,  which                                                               
required  conference  with  their  doctor, and  then  involved  a                                                               
lengthy  FDA  process  and  institutional   review  board.    The                                                               
proposed  bill   would  maintain  that  the   diagnosis  was  for                                                               
terminally  ill and  that  the patient  had  exhausted all  other                                                               
approved  options, in  consultation  with the  doctor, and  would                                                               
then require  consent of  the doctor, the  patient, and  the drug                                                               
manufacturer for access to those medications.                                                                                   
                                                                                                                                
REPRESENTATIVE CLAMAN  asked why  this was limited  to terminally                                                               
ill  patients, if  someone was  willing to  try the  experimental                                                               
options.                                                                                                                        
                                                                                                                                
MS. IVY  said that this question  had come up previously  and had                                                               
been  discussed  in other  states.    She reported  that  similar                                                               
legislation had passed  in 33 states, and that  this narrow focus                                                               
was more likely  to be supported in the courts.   She stated that                                                               
otherwise,  this  was,  in  essence,  opening  up  the  FDA  drug                                                               
approval process  and created a  larger policy  conversation than                                                               
the proposed bill wanted to tackle.   She added that the proposed                                                               
bill focused on  individuals with limited time, as  they had been                                                               
diagnosed as terminally ill.                                                                                                    
                                                                                                                                
REPRESENTATIVE  EASTMAN  acknowledged the  conservative  approach                                                               
for  the  proposed bill,  although  he  offered his  belief  that                                                               
politics  was  driving  the  question  of  who  gets  care.    He                                                               
suggested  that many  Alaskans,  although not  expecting to  die,                                                               
could benefit from  an experimental treatment and  "may very well                                                               
die even though they weren't expecting  to."  He declared that he                                                               
"would certainly  want to see what  we could do for  those folks,                                                               
as well."  He suggested that  a more pro-active approach could be                                                               
better,  offering  as  an example  Alaska's  leadership  for  the                                                               
legalization of marijuana.                                                                                                      
                                                                                                                                
4:07:44 PM                                                                                                                    
                                                                                                                                
CHAIR SPOHNHOLZ opened public testimony.                                                                                        
                                                                                                                                
4:08:22 PM                                                                                                                    
                                                                                                                                
KEN LANDFIELD  stated his  support of HB  43, and  questioned why                                                               
this was even  an issue.  He said that  any argument for creating                                                               
a sense of false hope was not  a valid argument, as "hope is hope                                                               
and terminal  is terminal."   He declared that  the compassionate                                                               
use program was clearly not  sufficient, otherwise, 60 percent of                                                               
the state legislatures  would not have enacted a  bill similar to                                                               
HB 43.  He emphasized that  time was "absolutely of the essence."                                                               
He  offered his  support for  the proposed  bill "because,  quite                                                               
frankly, I can't think of any reason why you wouldn't."                                                                         
                                                                                                                                
4:09:38 PM                                                                                                                    
                                                                                                                                
ELIZABETH KROME, Nurse,  shared that she had been a  nurse for 38                                                               
years, working in  multiple areas, and that she  had learned that                                                               
the  removal of  hope for  a  terminal condition  was "the  worst                                                               
thing in  the world  that can  happen."   She offered  her belief                                                               
that everyone  with a  diagnosis for  a terminal  condition needs                                                               
hope  and  that individuals  need  the  option to  try  different                                                               
treatments.     She   acknowledged  the   FDA  experimental   and                                                               
investigational programs and clinical  trials, but she added that                                                               
they had very rigorous criteria.   She stated her support for the                                                               
proposed bill.   She explained  that the patient would  have many                                                               
roadblocks, which  included the need  for a physician  to support                                                               
them, to locate the drug, and  to find an insurance company which                                                               
would pay for treatment rather than deny coverage.                                                                              
                                                                                                                                
4:12:58 PM                                                                                                                    
                                                                                                                                
MIKE MAHARREY, National  Communications Director, Tenth Amendment                                                               
Center,  reported that  the Tenth  Amendment Center  had been  in                                                               
support  of this  "Right to  Try" legislation  across the  United                                                               
States,  calling  it  the  "no-brainer   issue"  because  it  was                                                               
difficult to oppose.  He  reiterated that similar legislation had                                                               
passed in  33 states.  He  stated that laws and  regulations were                                                               
supposed to protect the people,  but, by their nature, regulatory                                                               
schemes also created  bureaucracy and red tape  which could cause                                                               
harm.   He  reported that  HB 43  did not  begin to  address "the                                                               
black hole between end of  clinical trials and the final approval                                                               
of the treatment.  This process can  take up to 10 months, and it                                                               
often leaves  patients in limbo."   He offered an example  of the                                                               
benefits  to patients  from the  passage of  a similar  "Right to                                                               
Try" bill  in Texas.   He  added that  the Texas  legislature was                                                               
considering  expansion of  this bill  to include  chronically ill                                                               
patients.    He  stated  that this  legislation  illustrated  the                                                               
"beauty  of our  federated structure.   The  American system  was                                                               
never  intended  to run  based  on  one  size fits  all  solution                                                               
imposed  from Washington,  DC."   He spoke  about the  dangers of                                                               
monopoly government.   He declared that "Right to  Try" laws were                                                               
an example of states using  their rights to authority to exercise                                                               
control over  local issues.   He stated  support of  the proposed                                                               
bill.                                                                                                                           
                                                                                                                                
4:15:54 PM                                                                                                                    
                                                                                                                                
JASON NORRIS offered an example  of his father's demise from ALS,                                                               
pointing out  that it affected  the body, but  not the mind.   He                                                               
recounted an article  in the Washington Post about a  man who had                                                               
fought ALS  using advanced  therapies, which had  led to  his own                                                               
awareness of  the "Right to  Try" movement.  He  implored passage                                                               
of the proposed bill.                                                                                                           
                                                                                                                                
4:19:39 PM                                                                                                                    
                                                                                                                                
MS. IVY, in  response to an earlier  question from Representative                                                               
Tarr, offered her understanding  that federal legislation allowed                                                               
for  a quicker  path  for breakthrough  medical  devices and  had                                                               
directed  the FDA  to evaluate  the use  of real  world evidence,                                                               
observational  studies,   patient  input,  other   research,  and                                                               
clinical  trial  data  in  order   to  approve  drugs  for  other                                                               
indications, and not  simply for their initial studied  use.  She                                                               
said  that this  did not  directly impact  the compassionate  use                                                               
program, however.  She said that  there was now a requirement for                                                               
drug companies  to publish  on their  websites their  policies on                                                               
how to access investigational drugs,  which should make it easier                                                               
to find out how to access these drugs.                                                                                          
                                                                                                                                
4:21:53 PM                                                                                                                    
                                                                                                                                
MS. IVY  clarified her earlier  response to  Representative Kito,                                                               
and shared  the four main points  made by the Governor  of Hawaii                                                               
in  his veto  of similar  legislation.   These  four main  points                                                               
included  that the  compassionate  use  program already  provided                                                               
access to  investigational drugs,  although the bill  sponsor had                                                               
pointed out  that there was  a delay through this  process, which                                                               
had  resulted in  the "Right  to  Try" legislation.   The  second                                                               
point made  by the  Governor of  Hawaii was  that the  bill could                                                               
potentially  interfere with  the  overall FDA  system, and  could                                                               
result   in  the   unintended  consequence   of  delay   for  the                                                               
development  of potentially  lifesaving drugs.   She  pointed out                                                               
that  the proposed  bill did  not compete  with clinical  trials.                                                               
She relayed  that the third point  made by the governor  was that                                                               
it  violated  the  supremacy clause,  which  had  been  discussed                                                               
repeatedly during similar legislation  debate in the many states,                                                               
and had been  declared a "floor not a ceiling."   She stated that                                                               
the final  point from the governor  had been that he  was unclear                                                               
what  the actual  benefits from  the "Right  to Try"  could offer                                                               
patients.  She added that both  the Hawaiian house and senate had                                                               
unanimously passed this legislation.                                                                                            
                                                                                                                                
4:23:46 PM                                                                                                                    
                                                                                                                                
MS. IVY addressed an earlier  question from Chair Spohnholz about                                                               
the  definition  for  terminal  illness.    She  stated  that  it                                                               
appeared  the definition  used  in the  proposed  bill came  from                                                               
Louisiana and  Colorado legislation, and  had since been  used in                                                               
"Right to Try" legislation in multiple other states.                                                                            
                                                                                                                                
4:24:24 PM                                                                                                                    
                                                                                                                                
MS.  IVY  referenced  an  earlier  question  from  Representative                                                               
Johnston regarding BCG medication, which  had been developed as a                                                               
vaccine  for tuberculosis,  although it  was also  being used  to                                                               
treat bladder cancers  and melanomas.  She  referenced an earlier                                                               
speaker from  the Goldwater Institute, who  had acknowledged that                                                               
once a drug had been approved by  the FDA, then off label use was                                                               
permitted and legal.   She offered her understanding  that it was                                                               
also permitted  for a physician  to prescribe  an investigational                                                               
drug which was in Phase 2 or Phase 3 for off label use.                                                                         
                                                                                                                                
4:25:33 PM                                                                                                                    
                                                                                                                                
MS.  IVY  turned attention  to  an  earlier question  from  Chair                                                               
Spohnholz  whether  informed  consent,  as  referred  to  in  the                                                               
proposed bill,  could include a  verbal conversation  between the                                                               
doctor and  the patient.  She  said that there was  not any other                                                               
place  in  Alaska statute  where  informed  consent was  defined;                                                               
however, in  the medical community  and under medical  ethics, it                                                               
was accepted  and understood that informed  consent was different                                                               
from consent in that the patient  must understand.  She said that                                                               
whatever the form  of communication, if the  procedure, the other                                                               
options,  and the  associated risks  were fully  understood, then                                                               
Legislative  Legal Services  agreed that  the current  definition                                                               
was broad enough.                                                                                                               
                                                                                                                                
4:27:00 PM                                                                                                                    
                                                                                                                                
CHAIR SPOHNHOLZ said that HB 43 would be held over.                                                                             
                                                                                                                                
^Presentation: Key Coalition                                                                                                  
                  Presentation: Key Coalition                                                                               
                                                                                                                                
4:27:39 PM                                                                                                                    
                                                                                                                                
CHAIR SPOHNHOLZ announced that the  final order of business would                                                               
be a presentation by the Key Coalition.                                                                                         
                                                                                                                                
4:27:57 PM                                                                                                                    
                                                                                                                                
The committee took a brief at ease.                                                                                             
                                                                                                                                
4:29:07 PM                                                                                                                    
                                                                                                                                
MILLIE RYAN, Chair, Key Coalition  of Alaska, Executive Director,                                                               
REACH, Inc.,  said that REACH  served about 350  individuals with                                                               
intellectual and developmental  disabilities in Southeast Alaska,                                                               
and was  one of  the ten largest  private employers  in Southeast                                                               
Alaska.   She reported that  this was the  30th year for  the Key                                                               
Coalition.   She  recited some  of the  earlier successes,  which                                                               
included  a Medicaid  funded home  and  community based  services                                                               
system,  closure  of  the very  costly  Harborview  Developmental                                                               
Center,  and  legislation  for   autism  insurance  reform  which                                                               
allowed  for services  to begin  earlier.   She  spoke about  the                                                               
establishment  of  a  durable medical  equipment  reuse  program,                                                               
which, in Kansas, had seen a  $3.15 return on each $1 invested in                                                               
the program.  She reported  that the regulations for this program                                                               
had been issued and the program  would be running very soon.  She                                                               
pointed  to recent  legislation  which allowed  families to  save                                                               
money toward disability related  expenses without losing Medicaid                                                               
or Social  Security and those  services necessary to  continue to                                                               
live in the community.  She  lauded that this 30 year partnership                                                               
between Key Coalition and the  State of Alaska had made effective                                                               
and efficient use of the  limited resources which were available.                                                               
She pointed  to the numerous  cost savings  recommendations which                                                               
the Key Coalition had submitted over the last several years.                                                                    
                                                                                                                                
4:31:48 PM                                                                                                                    
                                                                                                                                
EMILY ENNIS,  Executive Director, Fairbanks Resource  Agency, Key                                                               
Coalition of Alaska, said that  Alaska was recognized as being on                                                               
the   leading  edge   of  provider   services   for  those   with                                                               
disabilities.   She  expressed appreciation  for the  assistance,                                                               
support, and funding.                                                                                                           
                                                                                                                                
MS.  ENNIS  offered  a definition  of  developmental  disability,                                                               
reporting that this was a  condition which occurred between birth                                                               
and 22  years of age. As  it occurred in the  developmental years                                                               
of a  child, it  had a  significant impact on  the areas  of life                                                               
function:  mobility,  communication, and  cognitive  development,                                                               
and she noted that these  support services were usually necessary                                                               
throughout the life of  the person.  She said that  a goal of the                                                               
Key  Campaign   was  to   educate  about   the  needs   of  these                                                               
individuals.    She   said  that  about  100   years  ago  before                                                               
statehood, until the early 1970s,  there were not any services in                                                               
Alaska  for individuals  with disabling  conditions.   She  noted                                                               
that individuals  were transported  to the  Lower 48,  an arduous                                                               
trip  for someone  with a  disability, and  separated from  their                                                               
family  and community  and moved  into an  institutional setting.                                                               
She referenced these people as  the "Lost Alaskans."  She pointed                                                               
out that good  services were now developed, but  they depended on                                                               
good  funding.    She  declared  that  the  desire  was  for  the                                                               
opportunities  for a  full life,  regardless  of any  disability.                                                               
She said that Alaska had developed  a full array of services over                                                               
the past 50 years, which  included housing for adults, employment                                                               
services, and invaluable services for  families.  She pointed out                                                               
that  50  percent  of  parents of  children  with  a  significant                                                               
disability would  divorce.  She  asked that the  legislature work                                                               
toward  a sound  fiscal plan  so that  these services  for people                                                               
with  significant disabilities  could  lead  a full,  productive,                                                               
meaningful life in  their communities.  She pointed  out that any                                                               
cuts   in  funding   could  lead   to  catastrophic   impacts  on                                                               
individuals and families.                                                                                                       
                                                                                                                                
4:38:00 PM                                                                                                                    
                                                                                                                                
ADDISON TURNBOW  shared a personal  story of his sister,  who was                                                               
born in 1999,  with a complex series of disabilities.   He shared                                                               
the  initial difficulties  and  fears for  his  family, and  then                                                               
detailed the services  and the respite care  that brought support                                                               
to his family.   He acknowledged the difficulties  for his family                                                               
over  the past  18 years,  but declared  the thankfulness  of his                                                               
family for  all the support.   He stated that this  gift had lead                                                               
him to a career of service.                                                                                                     
                                                                                                                                
MS.   RYAN   spoke   about   Alaskans   with   intellectual   and                                                               
developmental  disabilities  who  were  able  to  lead  full  and                                                               
meaningful  lives  in  the  community,   as  a  result  of  these                                                               
services.   She mused that  the system was backward,  as Medicaid                                                               
home and  community based waivers  were waivers  to institutions,                                                               
and that  a costly institution  had to be provided  if requested,                                                               
although this was  not what most people wanted.   She stated that                                                               
people should  be able  to request  community based  waivers, and                                                               
then,  only   if  needed,   would  there   be  placement   in  an                                                               
institution.   She  emphasized that  waivers were  very important                                                               
for helping people become a part  of "this rich community that we                                                               
all know  and love."  She  reported that 41 percent  of adults in                                                               
Alaska  with  intellectual  and developmental  disabilities  were                                                               
either  working,  or  working   toward  employment,  whereas  the                                                               
national  average was  about  28.6 percent.    She declared  that                                                               
Alaska had done  a good job for  helping people go to  work.  She                                                               
noted that many  people lived with their family  and friends, who                                                               
offered unpaid support.                                                                                                         
                                                                                                                                
4:44:58 PM                                                                                                                    
                                                                                                                                
SHELLY VENDETTI VUCKOVICH shared  the story of her granddaughter,                                                               
Claire  Vendetti,  who  required   constant  care,  and  who  had                                                               
benefited from waiver  services.  She reported that  the home and                                                               
community  based services  had allowed  Claire to  stay home  and                                                               
make progress  on the journey  toward independence.   She offered                                                               
her belief  that this help  for Claire had  allowed all of  us to                                                               
become better people, as "we've  become educated about others who                                                               
are different  than us.   We've gotten to experience  the feeling                                                               
of doing something  good for the right reason."   She stated that                                                               
none  of  this  would  have  been  possible  without  the  waiver                                                               
services.                                                                                                                       
                                                                                                                                
4:51:09 PM                                                                                                                    
                                                                                                                                
MS. RYAN said  that, although services helped  people gain skills                                                               
and enrich  everyone's lives,  there was a  price.   She declared                                                               
that  home  and  community  based services  were  extremely  cost                                                               
effective programs.  She referenced  an earlier study which found                                                               
that elimination of the Medicaid  waiver program and the personal                                                               
care  assistance  program  would  ultimately cost  the  State  of                                                               
Alaska hundreds  of millions  of dollars,  which did  not include                                                               
the cost  of building facilities  to house people.   She declared                                                               
that adults with  disabilities wanted to be employed  and able to                                                               
support  themselves financially,  and  she  cited research  which                                                               
showed that  waiver funded employment  services resulted  in more                                                               
job placements,  higher wages, and  more hours of work  per week.                                                               
She suggested the use of  technology to increase independence and                                                               
to  reduce the  need  for  hands-on staff  support.   She  shared                                                               
information about a pilot program in Juneau, "Simply Home."                                                                     
                                                                                                                                
4:54:18 PM                                                                                                                    
                                                                                                                                
ALLEN RAY,  Simply Home,  shared that  Simply Home  had partnered                                                               
with  REACH and  the Key  Coalition, and  they were  working with                                                               
other state  legislatures on solutions to  utilize technology for                                                               
program savings.   He  declared that one  technology did  not fit                                                               
all but each solution could provide some savings.                                                                               
                                                                                                                                
REPRESENTATIVE  SADDLER  asked  for   examples  of  the  enabling                                                               
technology.                                                                                                                     
                                                                                                                                
MR. RAY  replied that  any support  delivered without  a provider                                                               
was  the most  cost effective.   He  reported on  control of  the                                                               
environment  for  work and  living  arrangements  through use  of                                                               
technological tools.                                                                                                            
                                                                                                                                
JASON  RAY,  Simply  Home,  shared  that  conversations  after  a                                                               
presentation  had  opened  up possibilities  for  outcomes  using                                                               
technology.  He asked for  the opportunity to show the technology                                                               
and how  it could be  utilized in  Alaska to improve  outcomes at                                                               
less cost.                                                                                                                      
                                                                                                                                
MS. RYAN offered  an example of the use of  sensor technology for                                                               
a young boy to allow him to keep his independence.                                                                              
                                                                                                                                
REPRESENTATIVE EASTMAN asked how  many Alaskans would be eligible                                                               
for services and the amount of funding necessary.                                                                               
                                                                                                                                
MS.  RYAN  offered  her  estimate that  there  were  about  3,000                                                               
individuals  receiving   waiver  services,  with   another  1,000                                                               
individuals who  received some lower  level grant services.   She                                                               
said that  the wait list had  varied from the current  500 people                                                               
to  about 1,200  people, although  "the need  does not  go down."                                                               
She stated  that technology allowed  people to live longer.   She                                                               
offered  an estimate  that 13,000  Alaskans  had a  developmental                                                               
disability,  although some  may not  need comprehensive  services                                                               
until  they leave  school.   She allowed  that "sometimes  people                                                               
don't need a  lot, they just need someone to  check in with them,                                                               
make sure things are okay, and that their doing fine."                                                                          
                                                                                                                                
REPRESENTATIVE EASTMAN  cautioned Ms.  Ryan to not  overstate the                                                               
case for  the good things,  as there  will always be  people that                                                               
could not  be reached in the  world of finite services.   He said                                                               
that people do  not have meaningless existences  before they were                                                               
found, and, if  services need to be pared back,  those lives will                                                               
still have meaning.                                                                                                             
                                                                                                                                
REPRESENTATIVE  TARR  addressed  the  optional  services  through                                                               
Medicaid, which included  physical therapy, occupational therapy,                                                               
respite  care,   and  speech,  hearing,  and   language  disorder                                                               
services.  She  emphasized that these were  not optional services                                                               
for Key Campaign members, these were basic necessary services.                                                                  
                                                                                                                                
MS. RYAN expressed  her agreement, but pointed  out that Medicaid                                                               
home and  community based services  were optional services.   She                                                               
added that these were approached differently in every state.                                                                    
                                                                                                                                
CHAIR  SPOHNHOLZ expressed  a better  understanding for  Medicaid                                                               
waiver options which  allow a reduction for the  cost of services                                                               
and ensure that there were  services which allowed people to stay                                                               
at home while  typically costing substantially less  than the in-                                                               
facility services "that were once the norm."                                                                                    
                                                                                                                                
REPRESENTATIVE  SADDLER  asked  if  Alaska  was  currently  in  a                                                               
transitional  period  when  there  could be  a  service  provider                                                               
industry  here  in  Alaska  where  people  could  make  a  living                                                               
providing services.                                                                                                             
                                                                                                                                
CHAIR SPOHNHOLZ  explained that  this was  an economy  created by                                                               
supporting the workers who provided these services.                                                                             
                                                                                                                                
MS.  RYAN  expressed her  agreement  that  this was  "a  bridging                                                               
period" although  Alaska was not  keeping up with a  livable wage                                                               
for people offering this direct support.                                                                                        
                                                                                                                                
5:07:31 PM                                                                                                                    
                                                                                                                                
ADJOURNMENT                                                                                                                   
                                                                                                                                
There being no  further business before the  committee, the House                                                               
Health  and  Social  Services   Standing  Committee  meeting  was                                                               
adjourned at 5:07 p.m.                                                                                                          

Document Name Date/Time Subjects
HB043 ver D 2.22.17.PDF HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Sponsor Statement 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Sectional Analysis ver D 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Clinical Trials in Alaska.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - FDA Drug Review Process 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Goldwater Institute Fact Sheet 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Goldwater Institute Patient Stories 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Goldwater Institute Policy Report Summary 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Legislative Map 2.22.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Fiscal Note DCCED--DCBPL 2.28.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB43 Supporting Document - Letters of Support 2.27.17.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB 43 Powerpoint Presentation.pdf HHSS 2/28/2017 3:00:00 PM
HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Letters of Support 3.2.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB043 Supporting Document - Goldwater Institute Policy Report.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/7/2017 3:00:00 PM
HB 43
HB0123 ver O 2.22.17.PDF HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB0123 Sponsor Statement 2.22.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB 123 Sectional Analysis 2.22.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB 123 Fiscal Note DHSS DPH 3.1.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB0123 Supporting Document-Article ADN-A Doctor's Quest to Remain Human Inside an Insane Medical System 2.22.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB0123 Supporting Document-AAMC Price Transparency in the News 2.22.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB0123 Supporting Document-American's For Progress-Price Transparency 2.22.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
HB0123 Supporting Document-Truven Health Analytics-Save $36 Billion in US Healthcare Spending Through Price Transparency 2.22.17.pdf HHSS 3/2/2017 3:00:00 PM
HHSS 3/9/2017 3:00:00 PM
HB 123
Key Coalition Priorities 3.2.17.pdf HHSS 3/2/2017 3:00:00 PM
Key Coalition
Key Campaign Legislative Priorities Presentation.pdf HHSS 3/2/2017 3:00:00 PM
Key Campaign