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Thursday, February 10, 2022

Zoom District Meeting

 

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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