Legislature(2025 - 2026)DAVIS 106
04/29/2025 03:15 PM House HEALTH & SOCIAL SERVICES
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| Audio | Topic |
|---|---|
| Start | |
| HB195 | |
| HB52 | |
| HCR4 | |
| HB64 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| *+ | HB 195 | TELECONFERENCED | |
| *+ | HCR 4 | TELECONFERENCED | |
| += | HB 64 | TELECONFERENCED | |
| + | TELECONFERENCED | ||
| += | HB 52 | TELECONFERENCED | |
HCR 4-MYOSITIS AWARENESS MONTH
4:52:25 PM
CHAIR MINA announced that the next order of business would be
HOUSE CONCURRENT RESOLUTION NO. 4, Proclaiming May 2025 as
Myositis Awareness Month.
4:52:52 PM
REPRESENTATIVE DAN SADDLER, Alaska State Legislature, as prime
sponsor, presented HCR 4. He described the opportunity that
legislators have to raise public awareness and bend the arc of
public health toward good. He said that HCR 4 would establish
May 2025 as Myositis Awareness Month. He added that HCR 4 would
increase public awareness of the disease, encourage more
knowledge in medical professions, encourage people to receive
treatment sooner, and bring hope to many patients.
4:54:49 PM
CHAIR MINA announced invited testimony on HCR 4.
4:55:16 PM
LAURA BOLDEN, representing self, testified in support of HCR 4.
She described her personal experience with Myositis, as well as
the variety of ways this disease can affect different people.
She listed some of the early symptoms of Myositis, many of which
are mistaken for aging. She emphasized that diagnosing Myositis
is difficult because it is rare and doctors do not have much
knowledge or experience of the disease. She added that her
diagnosis resulted after 3 years of initial appointments. She
stated that there is no cure but there are ways to make her life
easier. She urged the committee to support HCR 4.
4:59:04 PM
CHAIR MINA opened public testimony on HCR 4.
4:59:12 PM
DOMINIQUE JOHNSON, representing self, testified in support of
HCR 4. He began by describing his family's experience with
Myositis, as their daughter was diagnosed with the disease at
four years old. He said that Juvenile Myositis (JM) is a rare
autoimmune disease which affects about 1 in 5,000 children.
5:00:09 PM
CHRISTINE JOHNSON, representing self, testified in support of
HCR 4. She described the extensive medical tests and treatments
that her daughter has received since her diagnosis. She said
that her daughter has experienced more days of fatigue and
discomfort than any child should. She emphasized that education
and awareness are essential.
MR. JOHNSON continued reading testimony. He said that his
family found hope with the JM Foundation, which has brought
together people affected by the disease. He said that with more
awareness, there can be more understanding and help for families
like his. He emphasized the good that establishing a Myositis
Awareness Month would do, including sending the message to
children and families that they are not alone with this disease.
5:03:07 PM
ADDI JOHNSON, representing self, testified in support of HCR 4.
She described the physical symptoms of her JM and the treatment
she receives. She asked the committee to support HCR 4.
5:03:47 PM
REPRESENTATIVE FIELDS asked the Johnson family to share
information regarding their experience with insurance coverage
and Myositis.
5:04:48 PM
CHAIR MINA, after ascertaining there was no one else who wished
to testify, closed public testimony on HCR 4.
5:04:52 PM
The committee took an at-ease from 5:04 p.m. to 5:05 p.m.
5:05:44 PM
REPRESENTATIVE PRAX said that he wants to ensure that this
information gets out to those in medical communities.
5:06:39 PM
REPRESENTATIVE MEARS moved to report HCR 4 out of committee with
individual recommendations and the accompanying zero fiscal
note. There being no objection, HCR 4 was reported out of the
House Health and Social Services Standing Committee.