ADVANCING PUBLIC POLICY
Nearly a quarter of a million Americans signed the Association's petition to President Obama, calling for a strong national Alzheimer's plan to help all Americans affected by Alzheimer's disease.
As part of the process to develop the National Alzheimer's Plan, the Department of Health and Human Services (HHS) formed the Advisory Council on Alzheimer's Research, Care and Services. Harry Johns, president and CEO of the Alzheimer's Association, was among those appointed to the council by the Secretary of Health and Human Services. The council is charged with advising the Secretary on the development of a national strategy to address Alzheimer's disease. Several past and present members of the Alzheimer's Association National Board were also appointed to the council.
The Association's report, Alzheimer's from the Frontlines: Challenges a National Alzheimer's Plan Must Address, offered insights, perspectives and opinions from individuals across the country who participated in the Association's public input process to inform the plan. Building on the Association's commitment to provide a platform for those directly affected by Alzheimer's, the Association and its more than:
Participants included people living with the disease, caregivers, families, researchers, health care professionals, community leaders and many others.
In February 2012, the Department of Health and Human Services issued the first draft of the National Alzheimer's Plan, which was followed in May by the official release of the plan. The plan addresses issues that are important to the Alzheimer's community, including developing new treatments that prevent and effectively treat the disease, delivering much needed support for families and enhancing care quality and effectiveness.
More than 700 Alzheimer's advocates representing all 50 states took part in the 2012 Alzheimer's Association Advocacy Forum April 23-25 in Washington, D.C.
Health and Human Services Secretary Kathleen Sebelius addressed advocates on the administration's commitment to the development of the first-ever National Alzheimer's Plan. In total, advocates made 473 visits to their elected officials during the Forum.
At the National Alzheimer's Dinner, attended by celebrities, prominent politicians and Alzheimer's advocates in Washington, D.C., the Association presented University of Tennessee Head Coach Emeritus Pat Summitt and her son, Tyler Summitt, with the Alzheimer's Association Sargent and Eunice Shriver Profiles in Dignity Award. Coach Summitt announced in August 2011 that she had been diagnosed with younger-onset Alzheimer's. In addition, the Alzheimer's Association Advocate Award was given to Garrett Davis, an Alzheimer's Association Ambassador from North Carolina who created a play to honor his grandmother, who died of Alzheimer's, and the family members who cared for her.
In May 2012, the Association hosted "An Evening with Glen Campbell," an event to raise awareness of Alzheimer's disease among members of Congress. Held at the Library of Congress, the evening honored country music legend Campbell, who is living with the disease, and his family. Campbell performed favorites such as "Galveston," "Wichita Lineman," "Rhinestone Cowboy" and "Southern Nights."
The Association's advocacy program grew to include 458,000 advocates — individuals from around the country who play a critical role in speaking up for the rights and needs of those facing Alzheimer's disease. In FY12, Alzheimer's advocates held nearly 1,800 meetings with members of Congress and their staff. In addition, the Association's Ambassador program expanded to include more than 350 individuals. These high-level advocates act as liaisons between the advocacy community and their members of Congress.
Efforts to advance public policy at the state level continued as well. In collaboration with our chapter network, the Association increased the number of states that have either published or are in the process of writing Alzheimer's plans, reaching a total of 38 plus the District of Columbia. In addition, by the end of the fiscal year, 36 states and the District of Columbia had agreed to ask questions on cognitive impairment as part of their annual public health surveys. This will provide better data on the burden and impact of cognitive impairment at the state and local level.