ALASKA STATE LEGISLATURE
SENATE COMMUNITY AND REGIONAL AFFAIRS STANDING COMMITTEE
March 12, 2024
1:32 p.m.
MEMBERS PRESENT
Senator Forrest Dunbar, Chair
Senator Elvi Gray-Jackson
Senator Jesse Bjorkman
Senator Cathy Giessel
MEMBERS ABSENT
Senator Donald Olson, Vice Chair
COMMITTEE CALENDAR
SENATE BILL NO. 184
"An Act exempting the state from daylight saving time; and
providing for an effective date."
- MOVED CSSB 184(CRA) OUT OF COMMITTEE
SENATE BILL NO. 256
"An Act establishing May as Amyotrophic Lateral Sclerosis
Awareness Month; and providing for an effective date."
- HEARD & HELD
SENATE BILL NO. 242
"An Act relating to assessment of property, boards of
equalization, and certification of assessors; and providing for
an effective date."
- REMOVED FROM AGENDA
PREVIOUS COMMITTEE ACTION
BILL: SB 184
SHORT TITLE: ELIMINATE DAYLIGHT SAVING TIME
SPONSOR(s): STATE AFFAIRS BY REQUEST
01/16/24 (S) READ THE FIRST TIME - REFERRALS
01/16/24 (S) CRA
03/05/24 (S) CRA AT 1:30 PM BELTZ 105 (TSBldg)
03/05/24 (S) Heard & Held
03/05/24 (S) MINUTE(CRA)
03/12/24 (S) CRA AT 1:30 PM BELTZ 105 (TSBldg)
BILL: SB 256
SHORT TITLE: ESTABLISH ALS AWARENESS MONTH
SPONSOR(s): STATE AFFAIRS BY REQUEST
02/28/24 (S) READ THE FIRST TIME - REFERRALS
02/28/24 (S) CRA
03/12/24 (S) CRA AT 1:30 PM BELTZ 105 (TSBldg)
WITNESS REGISTER
GRIFFEN SUKKAEW, Staff
Senator Scott Kawasaki
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Presented the explanation of changes from
version A to B on SB 184.
SENATOR SCOTT KAWASAKI, District P
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Offered closing remarks on SB 184.
SENATOR SCOTT KAWASAKI, District P
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Introduced SB 256 on behalf of the Senate
State Affairs Standing Committee, sponsor by request.
JOE HAYES, Staff
Senator Scott Kawasaki
Alaska State Legislature
Juneau, Alaska
POSITION STATEMENT: Presented the sponsor statement and
sectional analysis on SB 256.
BROOKE Lavender, President
Amyotrophic Lateral Sclerosis Awareness (ALS) Association
Girdwood, Alaska
POSITION STATEMENT: Gave invited testimony in support of SB 256.
MICHELE FOLEY, representing self
Fairbanks, Alaska
POSITION STATEMENT: Gave invited testimony in support of SB 256.
ACTION NARRATIVE
1:32:34 PM
CHAIR FORREST DUNBAR called the Senate Community and Regional
Affairs Standing Committee meeting to order at 1:32 p.m. Present
at the call to order were Senators Giessel, Gray-Jackson,
Bjorkman, and Chair Dunbar.
SB 184-ELIMINATE DAYLIGHT SAVING TIME
1:33:29 PM
CHAIR DUNBAR announced the consideration of SENATE BILL NO. 184
"An Act exempting the state from daylight saving time; and
providing for an effective date."
The intention is to adopt a Senate Community and Regional
Affairs committee substitute (CS), take questions from committee
members, and look to the will of the committee.
CHAIR DUNBAR solicited a motion.
1:33:56 PM
SENATOR GIESSEL moved to adopt the committee substitute (CS) for
SB 184, work order 33-LS1037\B, as the working document.
1:34:08 PM
CHAIR DUNBAR objected for the purpose of discussion. He invited
Senator Kawasaki to make closing remarks and Mr. Sukkaew to
present the summary of changes.
1:34:37 PM
GRIFFEN SUKKAEW, Staff, Senator Scott Kawasaki, Alaska State
Legislature, Juneau, Alaska, presented the explanation of
changes from version A to B on SB 184.
[Original punctuation provided.]
Section 2: Changes the Effective Date from July 31,
2024 to November 4, 2024 in accordance with the
Uniform Time Act of 1966.
1:35:11 PM
CHAIR DUNBAR removed his objection. Finding no further
objection, CSSB 184 was adopted as the working document.
1:35:40 PM
SENATOR SCOTT KAWASAKI, District P, Alaska State Legislature,
Juneau, Alaska, made closing remarks on SB 184, emphasizing that
the decision to adopt Daylight Savings Time is complex due to
its varied impact on individuals. He highlighted health and
economic concerns tied to the change and noted that Alaska's
vast size and latitude cause significant differences in sunset
times, affecting businesses. He expressed gratitude to the
committee for considering SB 184.
1:36:52 PM
SENATOR BJORKMAN stated that the Alaska State Association of
Bankers opposes SB 184 due to concerns about its impact on their
ability to conduct business. He explained that the opposition
stems from the need to operate during critical business hours
aligned with the East Coast.
1:37:36 PM
SENATOR GIESSEL stated she has prior experience with the issue
at hand and predicts opposition from the chambers. She noted
that similar opposition prevented a prior bill from passing that
was introduced by former Senator Anna McKinnon. She opined that
in an electronic age, economic activities, including stock
exchanges and international transactions, can be conducted
smoothly online.
1:38:22 PM
SENATOR GRAY-JACKSON recalled agreeing with an audience member
during the last hearing about favoring Standard Time over
Daylight Savings Time. However, she stated she is now happy to
see Daylight Savings Time move forward.
1:38:51 PM
CHAIR DUNBAR stated that since a debate on the floor may not
occur, he supports the points raised by Senator Bjorkman in the
last hearing about the impact of moving away from Daylight
Savings Time on after-work recreation. He noted he would likely
have supported a bill for permanent Daylight Savings Time. He
said it is the biannual time change that he finds most
disruptive to health and constituents. He clarified that staying
on permanent Daylight Savings Time is not legally possible,
making this the only option to end the time changes. He urged
moving SB 184 forward.
CHAIR DUNBAR solicited the will of the committee.
1:39:49 PM
SENATOR GIESSEL moved to report CSSB 184, work order 33-
LS1037\B, from committee with individual recommendations and
attached zero fiscal note(s).
1:40:05 PM
CHAIR DUNBAR found no objection and CSSB 184(CRA) was reported
from the Senate Community and Regional Affairs Standing
Committee.
1:40:09 PM
At ease.
SB 256-ESTABLISH ALS AWARENESS MONTH
1:41:51 PM
CHAIR DUNBAR reconvened the meeting and announced the
consideration of SENATE BILL NO. 256 "An Act establishing May as
Amyotrophic Lateral Sclerosis Awareness Month; and providing for
an effective date."
He said the committee will hear an introduction, sectional
analysis, and invited and public testimony on SB 256.
1:42:19 PM
SENATOR SCOTT KAWASAKI, District P, Alaska State Legislature,
Juneau, Alaska, introduced SB 256 on behalf of the Senate State
Affairs Standing Committee, sponsor by request. He stated that
May is nationally recognized as ALS Awareness Month (Amyotrophic
Lateral Sclerosis Awareness Month). He explained that SB 256
aims to increase awareness in Alaska by proclaiming May as ALS
Awareness Month in the state.
1:43:11 PM
JOE HAYES, Staff, Senator Scott Kawasaki, Alaska State
Legislature, Juneau, Alaska, paraphrased the sponsor statement
for Sb 256:
[Original punctuation provided.]
The month of May is recognized as National ALS
Awareness Month. ALS is also known as Amyotrophic
Lateral Sclerosis or Lou Gehrig's disease. ALS was
first identified in 1869. In the 155 years since,
there is still no effective treatment and no cure.
ALS is a neurodegenerative disease that affects the
nerve cells in the brain and spinal cord that control
voluntary muscle movement and breathing. ALS is a 100%
fatal disease. There is no cure for ALS.
ALS is a rare disease, affecting approximately 5 in
100,000 people. Approximately 30,000 people in the
United States are currently living with ALS and
approximately 60 people in Alaska are currently living
with ALS. 90 percent of patients diagnosed with ALS
have no family history or disease. Only 10 percent of
patients have familial/hereditary ALS.
ALS may strike at any age, but most people who have
ALS are between 40 - 70. There are currently only 3
medications that slow the progression of ALS, and one
medication that targets familial ALS specifically.
These medications only extend life expectancy by a few
months.
ALS causes the motor neurons in the central nervous
system to degenerate over time and die. This affects a
person's ability to talk, walk, and breathe. People
with ALS will eventually lose their ability to speak,
become paralyzed, and lose the ability to breathe on
their own. ALS patients die from respiratory failure.
The mean survival for someone diagnosed with ALS is
two to five years. Every 90 minutes someone is
diagnosed with ALS, and every 90 minutes someone dies
from it. Veterans are 1 1/2 to 2 time more likely than
non-service members to be diagnosed with ALS. There is
no single test to diagnose ALS, it is diagnosed only
after numerous other conditions have been ruled out (a
delayed diagnosis results in delayed treatment/start
on medications). It can take a patient over a year to
get an ALS diagnosis.
ALS symptoms vary. In limb onset ALS, it may manifest
as weakness in a patient's hand or foot, arm or leg.
In bulbar onset ALS, it may manifest as trouble
speaking or swallowing. There currently is no known
cause of ALS. 100 percent of ALS patients are unaware
of the cause of their disease.
1:46:21 PM
MR. HAYES presented the sectional analysis for SB 256:
[Original punctuation provided.]
Section 1. Amends AS 44.12 to add a new section to
Article 2 to read: Sec. 44.12.190 Amyotrophic Lateral
Awareness Month.
Section 2. Creates an immediate effective date under
AS 01.10.070(c).
1:46:59 PM
CHAIR DUNBAR announced invited testimony on SB 256.
1:47:15 PM
BROOKE LAVENDER, President, Amyotrophic Lateral Sclerosis
Awareness (ALS) Association, Girdwood, Alaska, gave invited
testimony in support of SB 256. She described ALS as a fatal
disease that progressively weakens muscles, leads to paralysis,
and ultimately causes respiratory failure. She stated there is
no current cure and total disease duration costs are about $1.4
million. She shared a personal connection, noting her cousin
Nick Sloan, a US Marine sergeant, passed away from ALS and had
founded a nonprofit called Attack Life Sloan in Texas. She
emphasized that veterans are twice as likely to be diagnosed
with ALS and described her dedication to raising awareness and
supporting those affected in Alaska, where approximately 60
people currently live with ALS. She highlighted the lack of a
multidisciplinary ALS clinic in Alaska, forcing patients to
travel or relocate for essential care, adding significant
emotional and financial strain. She stressed that SB 256 would
help raise awareness and advocate for comprehensive ALS care
services in the state. She urged support for the bill, stating
it honors those lost to ALS, offers hope to those currently
battling the disease, and advocates for better access to care.
1:50:35 PM
MICHELE FOLEY, representing self, Fairbanks, Alaska, provided
the following testimony in support of SB 256:
[Original punctuation provided.]
Thank you for allowing me the opportunity to testify
today.
My name is Michele Foley, and I would like to share my
support for Senate Bill 256. I was officially
diagnosed with ALS in April 2023. My journey to a
diagnosis took almost a year. When I went to my doctor
with my first symptoms, she initially diagnosed me
with a vitamin deficiency, then as my symptoms became
more pronounced, she thought I perhaps have a
compressed nerve in my neck.
1:51:14 PM
MS. FOLEY continued:
Eight months after first showing symptoms, I was
referred to a neurologist in Anchorage, who thought I
might have ALS. It took another two months and a trip
out of state to receive an official diagnosis, and
another two months after that to jump through all the
hoops to get insurance approval to begin on the first
of only three medications available to ALS patients
that has been shown to slightly slow ALS progression.
Prior to my diagnosis, I had no idea what ALS was. I
was completely blindsided by my diagnosis.
When you are given an ALS diagnosis, you are told that
the life expectancy is two-five years. But living with
ALS, I have realized that you don't just die. In those
two to five years, ALS will take away everything I
value and hold dear. These two to five years will be
filled with the gradual loss of the use of my hands,
arms, feet, legs- the ability to talk, walk and
breathe. One slowly (or for some, quickly) loses the
ability to do everyday tasks. Grasping door handles to
open doors becomes impossible. One doesn't have the
strength to zip up a zipper, or the dexterity to
button a shirt. Doing basic tasks leaves me
breathless. I will eventually completely lose my
ability to talk, instead relying on a digitized voice
to communicate for me. Anyone who knows me knows that
I love to talk! I will lose the ability to walk, and
eventually, move at all. At some point in the disease
progression, ALS patients require full time care, for
everything from bathing, toileting, turning over in
bed, to someone to clean out their feeding tube and
trach tube, and getting into and out of a wheelchair.
It is an ugly, cruel disease.
As someone who knew nothing about ALS, and was
diagnosed with it, it is important to me to raise
awareness about this fatal disease. Increased
awareness would help patients and doctors be more
aware of the symptoms of ALS, leading to an earlier
diagnosis. It can take anywhere from one to three
years to receive a diagnosis. Raising awareness is
also important to bring understanding to the need for
additional research and funding for research to
develop meaningful treatment for ALS, and perhaps
soon, a cure. There are currently only three FDA
approved medications that slow the progression of ALS,
and these only extend life expectancy, at most, a few
months. Finally, increasing people's knowledge about
ALS, what the disease is and how it affects a person,
may bring awareness to the challenges and battles that
an ALS patient faces, and create a better
understanding for those fighting this brutal disease.
On a personal note, this summer our family decided to
visit family in the UK while I could still walk and
talk (though much more slowly). We rented a canal boat
in Wales. My 17-year-old grandson was the captain for
the four days and got us through the canal locks and
drawbridges expertly. We moored the boat one day and
my daughter and I went down the hill to a quaint
little store. On the way back up the hill I asked for
her arm to help me up the hill. I said, "ALS has made
me old before my time." We both started crying. Back
at the boat the captain asked what was wrong and I
told him that I was sad because of ALS. He started
crying. As we were holding onto each other, my middle
granddaughter saw us and asked why we were crying. We
told her why, and she hugged us and said she was
sorry. The youngest grandchild, 13, asked what was
going on and I told her I hated having ALS. She
responded, looking at her non-existent watch "Okay but
don't we need to get going?" And that's what we're
doing. We go forward in hope, and love and sometimes
tears, but always in hope.
I appreciate you allowing me the chance to voice my
support for Senate Bill 256.
1:55:47 PM
CHAIR DUNBAR opened public testimony on SB 256; finding none, he
closed public testimony.
CHAIR DUNBAR shared a personal connection to ALS through a
soldier he served with in the Army National Guard who was also a
Marine and deployed to Iraq and Afghanistan. He noted the
soldier was diagnosed with ALS after being assigned out of state
and recalled visiting him and his family during a training. He
expressed surprise that veterans are 1.5 to 2 times more likely
to develop ALS, suggesting this points to potential causes and
hope for a cure. He emphasized the personal impact ALS has on
friends and family and thanked the bill sponsor and Ms. Foley
for her moving testimony.
1:57:40 PM
CHAIR DUNBAR held SB 256 in committee.
1:58:09 PM
There being no further business to come before the committee,
Chair Dunbar adjourned the Senate Community and Regional Affairs
Standing Committee meeting at 1:58 p.m.