Legislature(2025 - 2026)BUTROVICH 205
02/11/2025 03:30 PM Senate HEALTH & SOCIAL SERVICES
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| Audio | Topic |
|---|---|
| Start | |
| SB60 | |
| SB83 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| *+ | SB 60 | TELECONFERENCED | |
| *+ | SB 83 | TELECONFERENCED | |
SB 60-ESTABLISH ME/CHRONIC FATIGUE SYNDROME DAY
3:34:47 PM
CHAIR DUNBAR announced the consideration of SENATE BILL NO. 60
"An Act establishing May 12 as Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome Day of Recognition."
3:35:01 PM
SENATOR LÖKI TOBIN, District I, speaking as sponsor of SB 60
began introducing the bill.
3:35:14 PM
LOUIE FLORA, Staff, Senator Löki Tobin, Alaska State
Legislature, Juneau, Alaska, introduced himself.
3:35:21 PM
CHAIR TOBIN paraphrased the following sponsor statement for SB
60:
[Original punctuation provided.]
Sponsor Statement
SB 60
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
percent of people unable to work or attend school and
25 percent of people housebound or bedbound. As many
as 90 percent of people with ME/CFS are undiagnosed.
Covid has increased the prevalence of ME/CFS three to
five times since 2020 with 50 percent 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.
3:38:29 PM
MR. FLORA provided the sectional analysis for SB 60:
[Original punctuation provided.]
Sectional Analysis
SB 60
Section 1 (Page 1, lines 4-9) Establishes Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome Day of
Recognition as Alaska Statute 44.12.167.
3:39:12 PM
DAVID PENN, MD, Anchorage, Alaska, invited testimony on SB 60,
moved to slide 1, ME/CFS myalgic Encephalomyelitis, and stated
he is not an expert; there are very few experts in the US or
world. He stated that myalgic encephalomyelitis is a chronic,
complex neuro-immune disease that severely impacts the health
and productivity of affected individuals. He explained that
while the exact cause and physiology are not fully understood,
it is often triggered by viral infections. He emphasized that
there is no diagnostic test, cure, or FDA-approved treatment. He
noted that most patients live with the disease for life, and
only about 5 percent are estimated to recover.
3:40:21 PM
DR. PENN moved to slide 2, a picture of listed symptoms pointing
to the area of the body they affect. He stated that the symptoms
of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
are numerous and impact all body systems. He explained that
symptoms include fatigue, brain fog, orthostatic intolerance
(worsening symptoms with upright posture), pain in muscles,
joints, and nerves, sensory sensitivity, flu-like symptoms,
chest pain, palpitations, shortness of breath, gastrointestinal
issues, loss of appetite, nausea, and bowel and bladder
dysfunction. He emphasized the profound and widespread effect of
the disease on patients.
3:41:04 PM
DR. PENN moved to slide 3, Diagnostic Criteria for ME/CFS, and
explained that due to the absence of diagnostic tests for
ME/CFS, clinicians rely on criteria established by the Institute
of Medicine in 2015. He stated that diagnosis requires a
substantial reduction or impairment in the ability to function
at pre-illness levels across multiple domains for more than six
months, accompanied by profound fatigue of new or definite
onset. He clarified that the fatigue is not lifelong from birth
but typically becomes lifelong, is not caused by excessive
exertion, and is not significantly relieved by rest. He
emphasized that post-exertional malaise is a pathognomonic
feature of the disease, along with unrefreshing sleep and either
cognitive impairment (brain fog) or orthostatic intolerance.
3:42:04 PM
DR. PENN moved to slide 4, Post Exertional Malaise (PEM), and
elaborated that post-exertional malaise, the hallmark symptom,
involves a worsening of symptoms or even the onset of new
symptoms following exertion. He noted that this can occur 24 to
72 hours after physical, cognitive, or emotional exertion. He
added that patients often describe the experience as feeling
poisoned, hungover, drained like a low battery, or as if they
are moving through wet cement. He stressed that this is distinct
from normal post-exercise fatigue, is not relieved by sleep, is
not due to deconditioning, and is not simply being unusually
tired after activity. He concluded that this symptom
significantly reduces quality of life.
3:43:05 PM
DR. PENN moved to slide 5, Health-Related Quality of Life by
Disease, and presented data showing that individuals with ME/CFS
report a lower quality of life than those with many other
serious conditions, including cancer, stroke, and multiple
sclerosis. He attributed part of this impact to the widespread
lack of awareness about the disease, both among the general
public and within the medical community.
3:43:31 PM
DR. PENN moved to slide 6, a graph showing the average time in
years from symptom onset to ME/CFS diagnosis by diagnosis year.
He shared his personal experience as a physician, stating that
he was unfamiliar with ME/CFS when his partner's condition began
to worsen. It took several years to reach a diagnosis, which he
did not make himself. His partner went from a successful
professional career to being fully disabled and unable to work.
He said a 2022 survey reported an average delay of 16.2 years
from symptom onset to diagnosis. He emphasized that this long
diagnostic delay reflects the broader lack of knowledge
surrounding the disease.
3:44:44 PM
DR. PENN moved to slide 7, a picture of Florence Nightingale,
and stated that the proposed recognition of International
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Awareness Day in Alaska aims to raise public and medical
awareness, enabling earlier recognition and diagnosis. He
emphasized that early identification is critical, especially
when treatment is limited to symptom management, as preventing
post-exertional malaise is essential to avoid long-term
deterioration. He noted that avoiding these episodes requires
awareness, making education the most effective tool for
preserving function and improving lives. He explained that May
12 was chosen by an American advocate in the early 1990s to
honor Florence Nightingale, founder of modern nursing, who
became bedridden later in life with what historians believe was
likely ME/CFS.
3:46:19 PM
DR. PENN moved to slide 8, International ME/CFS Awareness Day,
and expressed appreciation to the committee for their
consideration of the condition and efforts to raise awareness.
He stated his belief that this initiative has the potential to
significantly improve the health of Alaskans.
3:47:44 PM
CHAIR DUNBAR continued invited testimony on SB 60.
3:47:58 PM
HOLLIS MICKEY, representing self, Anchorage, Alaska, invited
testimony on SB 60 and stated that she has severe myalgic
encephalomyelitis (ME) and is among the 25 percent of patients
who are fully housebound and mostly bedridden. She shared that
she lost her active professional and personal life in Alaska,
where she had worked as an educator, arts administrator, artist,
and professor at the University of Alaska Anchorage. She
explained that even minor cognitive efforts now trigger symptom
escalation lasting hours to weeks, and she struggles daily with
basic self-care. She emphasized that due to widespread lack of
awareness in both the medical field and general public, patients
are often left to manage their healthcare alone and experience
social isolation. She urged support for the SB 60 as a
meaningful gesture to recognize ME patients, help them feel
seen, and promote more informed and compassionate care.
3:50:32 PM
SALLIE REDISKE, representing self, Homer, Alaska, invited
testimony on SB 60 and stated that she is a medically retired
physical therapist who developed ME/CFS as a child following a
severe fever after a hypothermic event. She described lifelong
cycles of appearing outwardly healthy while internally
struggling, followed by prolonged infections and debilitating
fatigue throughout her youth and into adulthood. She was not
diagnosed until age 32 in the year 2000.
MS. REDISKE explained that she lost her physical therapy
business, which had been designed around her healthcare needs
and served others with complex chronic conditions. At its peak,
the clinic employed 13 people who received strong benefits and
wages, contributing to the local economy. As her illness
progressed, she became fully disabled in 2016, closed the
business, and many employees left the community. She experienced
social isolation, losing friends who did not understand or
believe her condition.
MS. REDISKE shared that she spent three years bedridden, is now
mostly housebound, uses a power wheelchair, cannot drive, and
requires a live-in caregiver. She noted severe cognitive
challenges, including difficulty reading and following multi-
step instructions. In nearly 50 years of living with ME/CFS, she
has encountered only three healthcare providers in Alaska who
recognized the name of the diseasenone of whom knew how to
treat it. She urged support for the SB 60, emphasizing that
ME/CFS is not rare but rarely diagnosed, and stated that this is
a critical opportunity to improve care and access to management
strategies for Alaskans living with the disease.
3:53:52 PM
DONNA WAYNE ADERHOLD, Homer City Council Member, Homer, Alaska,
invited testimony on SB 60 and shared her experience with
ME/CFS, emphasizing the importance of recognizing the condition
and advocating for further research to ease the path for future
patients. She stated that her symptoms began in the late 1990s
with sudden fatigue and cognitive impairment, followed by years
of being dismissed by doctors. After multiple consultations, she
was eventually diagnosed with Epstein-Barr Virus, though it took
even longer to find a physician who could manage her condition.
She explained that after more than a decade of gradual
improvement, she contracted COVID-19 in August 2022, which
developed into long COVID and reactivated the Epstein-Barr
Virus. Her health significantly declined again, and despite
supportive doctors and years of effort, she continues to
experience severe energy crashes if she overexerts. She noted
that although she appears well in public, she often hides the
days when she cannot get off the couch or complete basic tasks.
She concluded that each ME/CFS journey is different, often
triggered by various infections, and that a day of recognition
would validate the condition as real and deeply impactful. She
urged support to raise awareness and help those living with
ME/CFS feel seen and understood.
3:56:36 PM
SIMONETTA MIGNANO, representing self, Anchorage, Alaska, invited
testimony on SB 60 and expressed support for the proposed day of
recognition to raise awareness of myalgic encephalomyelitis (ME)
and long COVID. She urged the medical community to take the
condition seriously, describing the experience of a close
frienda high-functioning professionalwho was forced to
completely withdraw from her life due to the severity of the
illness. She stated that witnessing her friend's physical and
emotional decline was heartbreaking and prompted her to learn
more about the disease. She emphasized that her friend's
experience is not unique and that many others are enduring
similarly devastating outcomes. She concluded that ME is more
than a collection of symptoms; it is a daily struggle that
demands validation and understanding.
3:58:58 PM
MICHAEL DICKERSON, representing self, Anchorage, Alaska, invited
testimony on SB 60 and stated that he has witnessed the impact
of myalgic encephalomyelitis (ME) on Hollis Mickey, who
contributed significantly to Alaska's arts and education
communities but can no longer engage with the creative work for
which she was known. He described her suffering as both acute
and chronic, and noted the broader loss of her leadership,
artistic voice, and friendship. He emphasized that the societal
cost of ME reaches beyond one individual and affects millions
worldwide. He expressed support for designating a day of
recognition as a meaningful step toward raising awareness, which
can lead to increased resources, better understanding, and
progress toward effective treatment or a cure.
4:00:27 PM
FRANCESCA DUBROCK, representing self, Anchorage, Alaska, invited
testimony on SB 60 and shared a personal account of witnessing
the impact of ME/CFS through her friend and former colleague,
Hollis. She described Hollis as operating at the highest level
intellectually, creatively, professionally, and physicallywhen
they worked together at the museum. She recalled Hollis's
vibrant lifestyle, including athletic activities and hosting
elaborate dinner parties. She explained that beginning in the
summer of 2022, Hollis's health visibly declined, leading to
short-term and then long-term disability. Since a brief driveway
visit in the summer of 2023, they have not seen each other in
person. She described witnessing Hollis endure painful
treatments that worsened her condition and caused immense
suffering, leaving loved ones feeling helpless due to the lack
of research and treatment options. She expressed deep admiration
for Hollis's strength and ongoing advocacy despite the
devastating nature of the illness. She concluded by stating that
recognizing May 12 as ME/CFS Awareness Day is the bare minimum
the community can do to raise awareness and help improve health
outcomes.
4:02:33 PM
MERCEDES HARNESS, representing self, Homer, Alaska, invited
testimony on SB 60 and stated that she is the parent of a
medically complex child receiving treatment for long COVID,
which has manifested as ME/CFS and autonomic nervous system
dysfunction. She shared that as her child's condition worsened
over the past yearafter two years of illnessefforts to seek
care in Alaska were repeatedly dismissed, with providers
minimizing her concerns and attributing the symptoms to frequent
childhood illness. She explained that her 10-year-old daughter
has effectively lost her childhood, having been hospitalized
twice at age nine, including one episode where her fatigue was
so severe she could not walk. Due to the lack of awareness and
diagnostic resources in Alaska, they traveled out of state to
seek answers. They eventually found support through a local
primary care provider working with out-of-state specialists, but
her daughter remains unable to attend school or maintain regular
social activities. She emphasized that her child's ongoing
health struggles are not the life any parent would hope for and
noted the devastating limitations ME/CFS places on both the
patient and the family. She urged that formal recognition of
ME/CFS is a vital step toward improving treatment, raising
awareness, and supporting affected individuals and their
caregivers.
4:05:24 PM
SARA TABBERT, representing self, Fairbanks, Alaska, invited
testimony on SB 60 and stated that she became aware of ME
through Hollis's work at the Anchorage Museum and her advocacy,
which came at significant personal cost. She shared that she now
knows two other individuals with MEof different ages and in
different regionswho both face varying levels of severity and
lack the support they need. She reflected on having witnessed
many serious illnesses among friends and family, including
cancer, severe mental illness, and AIDS, and stated that
watching someone live with severe ME has been the most
difficult. She emphasized the lack of relief, minimal public
understanding, and the painful reality that even well-
intentioned gestures of support can worsen symptoms. She urged
support for SB 60 to raise awareness in Alaska and contribute to
research that could lead to better treatment and a cure.
4:07:01 PM
SENATOR HUGHES described the testimonies as powerful and helpful
in providing a foundational understanding of myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS). She asked
whether the condition is more prevalent among females than
males.
4:07:44 PM
DR. PENN responded that ME/CFS is diagnosed two to four times
more frequently in women than in men. He noted that the reasons
for this disparity are not fully understood, though some
speculative explanations exist. He added that it may also
reflect underreporting by men or under recognition by providers.
He emphasized that ME/CFS affects people of all ages, from
children to elders, and spans all racial, ethnic, and
socioeconomic groups.
4:08:34 PM
SENATOR HUGHES asked how many states have recognized a day for
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
awareness. She acknowledged that raising awareness is an
important step toward securing research funding and ultimately
improving treatment and finding a cure.
4:09:04 PM
MR. FLORA suggested Dr. Penn might know the answer.
4:09:27 PM
MS. HOLLIS responded that she did not know the exact number of
states that have recognized a day for myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) awareness.
She noted, however, that May 12 is an internationally recognized
day, with organizations around the world observing it to raise
awareness.
CHAIR DUNBAR recognized the committee had received many letter
from doctors.
4:10:13 PM
SENATOR HUGHES stated that even if Alaska is among the first to
formally recognize ME/CFS Awareness Day, it is a necessary and
important step. She asked whether ME/CFS is considered a
disability under Medicare and the Veterans Administration (VA),
and whether it is a recognized diagnosis by Medicare, Medicaid,
and private insurance.
4:10:42 PM
DR. PENN stated that myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS) has a recognized diagnosis code under ICD-10.
He confirmed that it can qualify as a disability but
acknowledged that the lack of awareness among medical and
administrative systems often makes the process of obtaining
disability recognition challenging.
4:11:07 PM
SENATOR HUGHES asked whether fibromyalgia is a subset of myalgic
encephalomyelitis (ME), related to it, or a separate condition.
She noted some similarities between the two based on her
observations of a friend with fibromyalgia and wondered if her
friend may have actually had ME, given the overlap in symptoms.
4:11:28 PM
DR. PENN stated that some researchers believe fibromyalgia and
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may
exist on a spectrum, though the underlying pathophysiology of
both conditions remains unclear. He explained that it is common
for individuals to be diagnosed with both, especially given the
significant pain experienced by many ME/CFS patients. He added
that due to limited awareness of ME/CFS, more familiar diagnoses
like fibromyalgia are often applied, even when they may not
fully match the patient's condition.
4:12:25 PM
SENATOR HUGHES referenced the legislature's support for the
WWAMI program (Washington, Wyoming, Alaska, Montana, and Idaho
regional medical education) and noted that Senator Tobin's
sponsor statement mentioned most medical schools do not include
instruction on myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS). She asked whether WWAMI students currently
receive any education or training on this condition.
SENATOR TOBIN responded she didn't know but would find out.
4:13:03 PM
CHAIR DUNBAR concluded invited testimony and opened public
testimony on SB 60; finding none, he closed public testimony.
4:13:34 PM
CHAIR DUNBAR held SB 60 in committee.
4:13:39 PM
SENATOR TOBIN stated that many legislative efforts are deeply
personal and shared that this SB 60 holds personal significance
for her. She recalled working with Hollis at the Anchorage
Museum and emphasized the importance of elevating Alaskan
voices. She expressed that SB 60 could provide hope and solace
by affirming individuals' presence in the community, even when
they are not physically present.