When I looked at this week on my calendar, it seemed like it had been attacked by a magic marker. Some days had as many as three events with only Wednesday sitting in the middle of the week without a single notation.
Monday was a red-letter day on my calendar because that was the day we local Alzheimer’s advocates were meeting with Congresswoman Hartzler. Our meeting was scheduled for 10:30 at the Sedalia Fire Station. Jamie, a firefighter and a Walk committee member, and I decided to rearrange the room so that it was more conducive to conversation. We called it a square, round table setting.
The Congresswoman arrived on schedule, and after introductions, we sat down to talk about research funding and the BOLD Infrastructure for Alzheimer’s Act.
As Congresswoman Hartzler’s ambassador, I thanked her for her support of Alzheimer’s research. In the years I’ve traveled to D.C., I’ve seen funding increase from $400 million to more than $1 billion. The professional budget calls for $2 billion to reach our goal of a cure or effective treatment by 2025. We are asking for an increase of $425 million for fiscal year 2019.
We talked about how Alzheimer’s is a public health threat because the burden is large—five million Americans have Alzheimer’s disease. Because Alzheimer’s is a public health issue, the Centers for Disease Control and Prevention (CDC) would collect data on cognitive decline and lead the nations efforts to improve quality of life for those with the disease and reduce the costs associated with it.
Alzheimer’s affects not only the person with the disease, but also affects the caregiver. Several caregivers shared their stories. My mom said, “I saw how stressed Linda was…every day. She was working and taking care of Jim. She couldn’t sleep because Jim would wander off in the night.”
Another advocate shared how her grandfather’s personality changed and how things he said to her grandmother stayed with her even after he passed away. Other caregivers told of instances where the person with the disease outlived the caregiver.
We need to use a BOLD approach to end Alzheimer’s! The BOLD Act establishes Alzheimer’s Centers of Excellence; provides funding to state, local, and tribal public health departments to promote early diagnosis; and increases collection and reporting of data on cognitive decline. As our time drew to a close, I made the “ask.” Congresswoman Hartzler said she would study BOLD (HR 4256) and give consideration to lending her support. She praised our handouts and thanked us for keeping her informed about our legislation.
We had forty-five minutes with the Congresswoman. As she was leaving, she hugged my ninety-one-year-old mother and said, “When I grow up, I want to be you.”
Copyright © May 2018 by L.S. Fisher