Legislature(2025 - 2026)DAVIS 106
03/18/2025 03:15 PM House HEALTH & SOCIAL SERVICES
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| Audio | Topic |
|---|---|
| Start | |
| State Medical Board | |
| HJR9 | |
| HB14 | |
| SB60 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | TELECONFERENCED | ||
| *+ | HJR 9 | TELECONFERENCED | |
| += | HB 14 | TELECONFERENCED | |
| + | SB 60 | TELECONFERENCED | |
| + | TELECONFERENCED |
SB 60-ESTABLISH ME/CHRONIC FATIGUE SYNDROME DAY
SB 60-ESTABLISH ME/CHRONIC FATIGUE SYNDROME DAY
4:45:21 PM
CHAIR MINA announced that the final order of business would be,
SENATE BILL NO. 60, "An Act establishing May 12 as Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome Day of Recognition."
4:45:35 PM
SENATOR L?KI GALE TOBIN, Alaska State Legislature, as prime
sponsor, presented SB 60. She described the constituent in her
district who inspired HB 60. She paraphrased the sponsor
statement [included in the committee file], which read as
follows [original punctuation provided]:
Senate Bill 60 establishes May 12 as Myalgic
Encephalomyelitis (ME) Awareness Day to help spread
knowledge of the disease, the need for research and
appropriate medical care, and to support individuals
and their families living with Myalgic
Encephalomyelitis.
Myalgic Encephalomyelitis, also known as chronic
fatigue syndrome (CFS) or ME/CFS, is a serious,
chronic, neurologic disease affecting as many as nine
million Americans of all ages, including children.
ME/CFS causes dysfunction across all body systems that
severely impacts quality of life and ability to work.
ME/CFS often causes a lifetime of disability, with 75%
of people unable to work or attend school and 25% of
people housebound or bedbound. As many as 90% of
people with ME/CFS are undiagnosed. Covid has
increased the prevalence of ME/CFS three to five times
since 2020 with 50% of Long Covid cases meeting the
diagnostic criteria for ME/CFS. Long Covid is
affecting as many as 56 million Americans with an
estimated economic impact of $3.7 trillion dollars.
ME/CFS is underfunded relative to disease burden and
has no known treatments or cures. Experts and
advocates for years have been requesting increased
funding, research, medical education, and
multidisciplinary collaboration. Medical education
pertaining to ME/CFS is lacking. According to the U.S.
Center for Disease Control and Prevention most medical
schools in the United States do not have ME/CFS as
part of their physician training. This leaves the
average medical practitioner untrained and unprepared
to treat people with ME/CFS & associated diseases.
Establishing May 12 as Myalgic Encephalomyelitis
Awareness Day in Alaska mirrors the international
designation, chosen to memorialize the birth date of
Florence Nightingale, the English army nurse who
inspired the founding of the International Red Cross,
and who was believed to have contracted a chronic
immunological and neurological illness in her mid-
thirties and spent the last 50 years of her life
virtually bedridden.
This day of recognition will lead to increased
awareness of ME/CFS in Alaska. It is our hope that
this recognition will lead to increased funding for
research by the federal government and private
entities, directed clinical education of the disease,
and development of diagnostic testing and appropriate
treatments, resulting in better medical care for those
living with ME/CFS.
4:49:10 PM
CHAIR MINA announced invited testimony.
4:49:27 PM
DAVID PENN, MD, provided medical context for ME/CFS, explaining
the symptoms and possible triggers for the syndrome. He said
that increasing awareness of ME/CFS would improve the diagnostic
capability by increasing medical providers' ability to recognize
and understand the syndrome.
4:53:15 PM
HOLLIS MICKEY, as invited testifier, described her personal
experience with severe ME/CFS.
4:57:01 PM
SALLIE REDISKE, DPT, representing self, described her personal
experience with ME/CFS. She emphasized that ME/CFS is not rare
but is a rarely diagnosed disease.
4:59:53 PM
MERCEDES HARNESS, as invited testifier, described her personal
experience as the mother of a child with ME/CFS.
5:03:00 PM
MEGAN DAVIES, MD, as invited testifier, described her personal
experience with ME/CFS.
5:06:57 PM
CHAIR MINA opened public testimony on SB 60.
5:07:34 PM
SUSAN SHARE, representing self, testified in support of SB 60.
She shared a personal anecdote regarding her friend with ME/CFS,
describing the disease and how it has affected her friend's
daily life.
5:08:42 PM
SIMONETTA MIGNANO, representing self, testified in support of SB
60. She shared a personal anecdote regarding her friend with
ME/CFS, describing the disease and how it has affected her
friend's daily life.
5:10:27 PM
ENZINA MARRARI, representing self, testified in support of SB
60. She shared a personal anecdote regarding her friend with
ME/CFS, describing the disease and how it has affected her
friend's daily life.
5:12:55 PM
JAYBIRD OLIVER, representing self, testified in support of SB
60. She shared a personal anecdote regarding their friend and
neighbor with ME/CFS, describing the disease and how it has
affected her friend's daily life.
5:14:21 PM
FRANCESCA DUBROCK, representing self, testified in support of SB
60. She shared a personal anecdote regarding her friend with
ME/CFS, describing the disease and how it has affected her
friend's daily life.
5:16:19 PM
DONNA ADERHOLD, representing self, testified in support of SB
60. She described her personal experience with ME/CFS,
describing the disease and how it has affected her daily life.
5:18:53 PM
CHAIR MINA, after ascertaining there was no one else who wished
to testify, closed public testimony on SB 60.
[SB 60 was held over.]