One
thing I’ve learned throughout the past two years is that when you can’t meet in
person, Zoom brings a group together for important meetings.
Today
we met with Janna Worsham from Congresswoman Hartzler’s office via Zoom. Almost
like magic, a dozen people met to discuss Alzheimer’s federal
priorities.
Our
group was made up of an entire cast of talented, knowledgeable volunteers and
staff. This multifaceted approach was a unique way of celebrating the services
and public involvement to assist those living with Alzheimer’s and their care
partners.
The
meeting today concentrated on two important “asks.”
1. The FDA has approved the first
Alzheimer’s treatment that addresses the underlying biology of the disease. CMS
(Centers for Medicare and Medicaid Services) has drafted a decision that would
limit coverage to those who are enrolled in clinical trials. The other option
would mean to pay out of pocket. If CMS makes this unprecedented limitation on
coverage of an FDA approved drug, it could affect other promising Alzheimer’s
drugs close behind in the research pipeline. We appreciate that Congresswoman
Hartzler has already shown her support for full access to FDA approved
Alzheimer’s treatments.
2. Research is key to finding an effective
treatment for Alzheimer’s and other dementias. We are asking Congress to
approve an additional $289 million for Alzheimer’s research at NIH for Fiscal
Year 2022. WE are also asking they approve $20 for implementation of the BOLD
Act.
I know
that when Jim was diagnosed with an Alzheimer’s type of dementia, I held out
hope that an effective treatment would become available in his lifetime. Our
family made the decision to enroll Jim in a Phase III drug trial. This gave him
access to a drug that was not available otherwise. Unfortunately, side effects
caused us to withdraw Jim from the study, and the drug was never approved for
the general public.
For
many years during the Walk to End Alzheimer’s we carried four different colored
pinwheel flowers. The Orange flower means you support the cause. A yellow flower
means you are a caregiver to someone who has Alzheimer’s. The blue flower means
you are living with Alzheimer’s. I always chose the purple flower because I
lost a loved one to Alzheimer’s.
A few
years ago, a single white flower was added to symbolize the first survivor. The
white flower could be named Hope until its name is changed to Cure.
I will
continue my mission to Zoom, Walk, Advocate, and cheerlead until we find that
elusive cure for Alzheimer’s disease. I look forward to the day when hundreds
of Alzheimer’s survivors carry white flowers at the Walk to End Alzheimer’s.
Copyright
© February 2022 by L.S. Fisher
http://earlyonset.blogspot.com
#ENDALZ
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