Date: Wednesday, April
02, 2014, 9:00a.m.
Room: Hawai’i State
Legislature Conference Room 329
To: The House of
Representatives Committee on Health
Rep. Della Au Belatti,
Chair Rep. Dee Morikawa, Vice Chair
Rep. Mele Carroll
Rep. Richard Creagan
Rep. Mark J. Hashem
Rep. Jo Jordan
Rep. Bertrand Kobayashi
Rep. Marcus R. Oshiro
Rep. Justin Woodson
Rep. Lauren Kealohilani Matsumoto
Measure Title: HR 68,
Proposed HD1: Requesting the Auditor to assess the social and financial
effects of requiring health insurers to provide coverage for brain injury.
Proposed HD1: Urging community awareness of Amyotrophic
Lateral Sclerosis, also known as ALS or Lou Gehrig’s Disease, and community
support for finding a cure for ALS and the provision of assistance to ALS
patients.
My name is Richard K
Raker. I am a longtime resident of Honolulu, Hawaii. I have been living with
ALS for the last eight years. I am submitting testimony in strong support of HR
68, Proposed HD1 because I understand firsthand how difficult it is for the
patient, the family and the caregivers, to cope with the daily struggles of
this disease.
Imagine being frozen in
your body, unable to move anything but your eyes. You cannot speak, you cannot
eat, you get nutrition through a tube in your stomach, you need a ventilator to
breathe, and you spend most of your hours/days in a hospital bed. You are
completely dependent on others. You rely on your caregivers and family to do
everything for you.
But, let me start at the
beginning. You felt sick, lethargic and weak for almost 6 months before you
were finally admitted into the hospital. Your primary care physician had no idea
what was wrong. It took 10 days of testing by specialists to determine the diagnosis.
When you first heard the words "ALS – Lou Gehrig's disease," you knew
nothing about it, except that it was named after a famous baseball player. When
the neurologists gave you the news, and handed you a printed page from a website,
that you had a terminal illness and that statistically you only had 3 to 5
years to live, you reacted with disbelief, prayer and courage. "I feel
okay, I can beat this."
Within a year, all of
your motor neurons had started to shut down. Your muscles began to atrophy. You
fell down the stairs several times. You couldn't lift yourself off the toilet. You
couldn't drive anymore. You had to stop working. Your children could not rely
on you to take them to school or soccer practice. Your wife continued to work,
as well as care for you, but your physical condition had worsened to the point
that you could no longer be left alone. Expensive paid caregivers, not covered
by medical insurance, were needed. The medical bills started to grow. Equipment
needed to be purchased, or rented. Insurance only covers so much... Durable
Medical Equipment is expensive. With one income, you could not make your
mortgage payments and keep up with the medical bills. You started to tap into
your 401(k) plan and retirement savings. You had to sell your house and move
into an apartment. Then, sadly, you couldn't breathe on your own. And so the
disease progresses...
The above does
not match my particular progression/situation exactly, though most of it is
true. I've been lucky. I can still speak. I use speech recognition software to
control my computer and send this testimony to you. I have Long Term Disability
and Social Security income, decent medical insurance along with Medicare. I
have a wonderful family, competent caregivers, good friends, and the support of
the MDA, and the local Hawaii ALS Support Group. I'm grateful. I'm surviving –
eight years now. I try to remain positive, still, the difficulties remain. I
worry about the future, when my LTD and medical insurance expire. I wonder how
long I can continue to be a financial and emotional burden on my family.
ALS is a relatively rare
disease that most people have never heard of. Even my doctors, who are
extremely compassionate and competent, had had little experience with the
disease. Increasing public and private awareness of the disease can help
organizations like the MDA, and local and national ALS organizations, raise
funds for research, treatment, and direct support to patients and their
families. There are so many competing diseases out there – cancer, Alzheimer's,
diabetes, etc. – ALS, because it occurs relatively infrequently in the overall
population of Americans, is often overlooked. Please help by declaring that the
Hawaii State Legislature is in favor of promoting awareness of the disease, and
that you support research funding to find a cure and treatment.
But, I challenge you to
do more. Are there other creative things that you can do to help support ALS
patients and their families?
Thank you for hearing
this measure and for the opportunity to express my strong support of HR 68, HD1
Proposed.
Sincerely,
Richard K Raker
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