Monday, March 30, 2015

Alzheimer’s Advocacy Forum 2015

I joined 1,100 other focused and dedicated advocates in Washington, D.C., to take our message to Capitol Hill. As always a highlight for me is to meet my long-term (fifteen years!) friends, and sisters of the heart, Sarah Harris and Kathy Siggins. This is the one time each year we get together, talking non-stop until we get caught up. Once we enter the forum, we’re focused on the message.  

The first training session for ambassadors began immediately following lunch on Monday. The program began with an exercise. Everyone was asked to shout his or her name. Of course, the result was a loud, indecipherable noise. Yet when everyone whispered in unison “Alzheimer’s is the most expensive disease in America,” it was easily understood. This demonstrated the impact of everyone being on the same page and delivering the same message.

Our mission was for Alzheimer’s advocates to deliver our federal priorities to our senators and representatives.  

1.                  Increase the commitment to Alzheimer’s research by $300 million. The current level of investment is $586 million. Even with the increase, this amount is far short of the $2 billion annual estimate to implement the steps toward meeting the goal of a cure or effective treatment as set forth by the National Alzheimer’s Plan.
2.                  Co-sponsor the Hope for Alzheimer’s Act. During the Forum, the Act was re-introduced with a focus on care planning and documentation of medical records. This act is consistent with the National Alzheimer’s Plan
The cost of caring for individuals with Alzheimer’s is a staggering $226 billion. One in every five Medicare dollars is spent on people with Alzheimer’s disease. These numbers will only continue to increase as the baby boomers age. By 2050, the cost of Alzheimer’s care is expected to reach $1.1 trillion per year. The only way to avoid this pending economic crisis is to find an effective treatment or cure for Alzheimer’s disease.

Research today is exciting and we seem to be on the cusp of finding the key to unlock the elusive cure for Alzheimer’s. New studies have shown great promise. New technology allows scientists to see beta amyloid plaques and tau tangles in living brains. Now, the effectiveness of treatments can be measured through this imaging.

A breakout session on social media showed us how to use tools provided by the Association to share highlights of the session via social media—Twitter and Facebook. We participated in a “Thunderclap” that released hundreds of tweets and Facebook posts as we began our Hill visits. The Association also re-tweeted any tweets containing #ALZFORUM or #ENDALZ. During the National Alzheimer’s Dinner, tweets were displayed on the screens, including several of mine.

All fifty states were represented during the roll call of the states. The most poignant moment during the roll call was an advocate accompanied by his wife who had Alzheimer’s. My heart went out to both of them.

Dr. David Satcher, former U.S. Surgeon General presented the keynote. He focused on leadership and teamwork. He said, “everyone teaches and everyone learns.” Dr. Satcher  said, “Leadership is like a relay race.” It doesn’t just depend on how fast you run, but whether you have the baton at the finish line. “If you drop the baton, the race is over.” He read a poem his wife, Nola, had written for their wedding reception, “I’ve Never Been Here Before.” Nola was diagnosed with Alzheimer’s fifteen years ago giving a new meaning to the poem.   

Periodically, throughout the meeting, advocates and people with dementia would tell why they were advocates. The most delightful person to speak was Amy Shives. She said she was diagnosed at fifty, as was her mother, with dementia of the Alzheimer’s type—atypical. She never considered herself to be typical anyway. She said that people with Alzheimer’s did not like to be called “sufferers” because they are people, not the disease. “If you’ve met one person with Alzheimer’s; you’ve met one person with Alzheimer’s.” Amy said that now she could wear her new shoes even if they don’t match her dress. Her first dog, Chester, alerts her when she is going to have seizures. She freely admitted that her cat doesn’t care. Her husband, George, is her care partner and she loves him more than ever. Amy is being considered for an appointment to next year’s Alzheimer’s Association Board of Directors.
Lisa Genova, author of Still Alice, received the Sargent and Eunice Shriver Profiles in Dignity Award. Lisa was at the 2008 Alzheimer’s Forum speaking to an early stage group and selling her self-published book. I bought a book from Lisa during that long-ago Forum prepared to be disappointed. Boy, was I ever wrong! I was so impressed by Still Alice that when a student I was mentoring wanted to know what Alzheimer's book to review, I recommended Still Alice. The book was later published by Simon & Schuster and spent 40 weeks on the New York Times bestseller list and sold 2.1 million copies in 30 different languages. The movie, starring Julianne Moore, has followed a circuitous route to become an acclaimed movie co-produced by  Elizabeth Gelfand Stearns, chair of the Judy Fund, who read the book in one night.

On Wednesday, we stormed Capitol Hill. Jessie Kwatamdia, Marcia Rauwerdink, and I along with other advocates visited Senator Blunt and Claire McCaskill’s offices. We three then visited with Congresswoman Hartzler, where we received a warm reception. After our visits, Jessie and I attended the Senate Hearing on the Fight Against Alzheimer’s, Senator Susan Collins, chair, and  Claire McCaskill, ranking member. Missouri advocate Kim Stemley, a young caregiver for her mother, gave a powerful, on-point testimony. 

The influence of 1,100 dedicated advocates, wearing purple sashes, each delivering the same message, punctuated with personal stories, leaves a lasting impression on our legislators. Collectively, we are influential, but we are unstoppable as individuals who advocate throughout the year.

I am thankful to once again be part of this group and look forward to returning for my sixteenth Advocacy Forum April 4 – 6, 2016, to make sure our voices are not forgotten. 

Copyright © March 2015 by L.S. Fisher

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