Legislature(2023 - 2024)BELTZ 105 (TSBldg)
03/12/2024 01:30 PM Senate COMMUNITY & REGIONAL AFFAIRS
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| Audio | Topic |
|---|---|
| Start | |
| SB184 | |
| SB256 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| *+ | SB 256 | TELECONFERENCED | |
| += | SB 242 | TELECONFERENCED | |
| += | SB 184 | TELECONFERENCED | |
| + | TELECONFERENCED |
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.
| Document Name | Date/Time | Subjects |
|---|---|---|
| Sponsor Statement SB 256.pdf |
HSTA 4/11/2024 3:00:00 PM HSTA 4/23/2024 3:00:00 PM SCRA 3/12/2024 1:30:00 PM |
SB 256 |
| SB 256 Sectional Analysis.pdf |
HSTA 4/11/2024 3:00:00 PM HSTA 4/23/2024 3:00:00 PM SCRA 3/12/2024 1:30:00 PM |
SB 256 |
| SB0256A.pdf |
HSTA 4/23/2024 3:00:00 PM SCRA 3/12/2024 1:30:00 PM |
SB 256 |
| SB 256 Fiscal Note OMB 3.8.2024.pdf |
HSTA 4/11/2024 3:00:00 PM HSTA 4/23/2024 3:00:00 PM SCRA 3/12/2024 1:30:00 PM |
SB 256 |
| SB 184 Amendment A.1 3.8.2024.pdf |
SCRA 3/12/2024 1:30:00 PM |
SB 184 |
| 2024-03-11 SB 184 Letter of Opposition Signed.pdf |
SCRA 3/12/2024 1:30:00 PM |
SB 184 |