Policy and Advocacy

Making the case for more Alzheimer's research funding

Public policy decisions include funding decisions. Lawmakers decide how much and for what purpose government money will be dedicated in the federal agencies such as the National Institutes of Health, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the Administration on Aging. To convince Congress that Alzheimer's research needs additional investment, the Alzheimer's Association educates decision makers on the economic and emotional toll that Alzheimer's takes on families and the nation.

Policy resources developed by the Association include:

• Alzheimer's Disease Facts and Figures, the first comprehensive statistical brief detailing the burden of Alzheimer's and other dementias on people, local and state government, and the nation's health care system. This key resource is updated annually.
• Changing the Trajectory of Alzheimer's Disease: A National Imperative, a report that shows the current economic projections for Alzheimer's disease in our nation and how the development of new treatments would yield valuable results by improving lives and reducing the economic burden of the disease.

Why should Alzheimer's be a national priority?

• The rapid aging of America as baby boomers enter the age of greatest risk means a dramatic rise in the number of Alzheimer's cases in the coming years.
• There is no cure or preventative treatments.
• There are no disease-modifying drugs to stop, delay or reverse progression.
• There is no national plan to combat the disease.
• The costs for Alzheimer's care and services continue to rise, straining our overwhelmed health care system and threatening to bankrupt Medicare and Medicaid.
• Chronic underinvestment and flat federal funding for research is leaving promising research unfunded and slows scientific progress.

Voicing our message

Our advocates are active throughout the year engaging elected officials at all levels of government. Every spring, they come to Washington, D.C., to participate in the annual Alzheimer's Association Advocacy Forum. The Forum brings together hundreds of advocates from across the country to get briefed on the issues and to meet face-to-face with their members of Congress to push for Alzheimer's legislative priorities. Advocates also work with Alzheimer's Association chapters at the local and state levels to pass legislation.

Alzheimer's Ambassadors, who serve as key contacts to members of Congress for the Association, play a major role in year-around advocacy, meeting regularly with members of Congress and their staff to discuss federal legislative priorities, serve as advocacy spokespeople for local media, and assist chapters in recruiting new grassroots advocates.

Another group of key advocates are our Early Stage Advisory Group (ESAG). These advocates work to educate state and federal officials about the need for improved research funding, care and support programs. ESAG members attend both the Advocacy Forum and many state lobby days organized by chapters.

In another effort to increase federal funding, top researchers are voicing the message that Alzheimer's must be a national priority through the Alzheimer's Association Breakthrough Ride. This coast-to-capital bicycle relay by researchers seeks signatures supporting our petition to Congress to make Alzheimer's a national priority.

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Key legislation we are leading

We are currently working to enact three key federal legislative priorities:

1. Increase the commitment to Alzheimer’s research: The Alzheimer’s Breakthrough Act – (H.R. 1897)
   Over the next 40 years, Alzheimer’s will cost our country $20 trillion. But a treatment that delayed onset of Alzheimer’s by just five years would reduce Medicare spending on those with the disease by 45 percent in 2050. Unfortunately, there continues to be a chronic underinvestment in Alzheimer’s disease research. The Alzheimer’s Breakthrough Act would require a federal commitment to accelerating treatments that prevent, cure, or slow the progression of the disease and thus reduce the costs to the federal government and families. It would make Alzheimer’s research a priority at the National Institutes of Health (NIH), create public-private partnerships, and ensure that the NIH requests the funding necessary to get the job done. Learn more at www.alz.org/breakthroughact.
2. Expand diagnosis and care planning: The HOPE for Alzheimer’s Act –
   (S. 738/H.R. 1386)
   In order to provide better medical care and outcomes for individuals with Alzheimer’s and other dementias, possible dementia must first be detected, the disease must then be diagnosed, care must be planned, and the diagnosis must be noted in the patient’s medical record. Studies also suggest that early diagnosis and care planning are keys to the improved long-term health of caregivers. The Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act would expand diagnosis of Alzheimer’s disease, provide information on medical and non-medical services for newly-diagnosed patients and their families, and require that a diagnosis be noted in a patient’s medical record. Learn more at www.alz.org/hopeact.
3. Implement the National Alzheimer’s Project Act
   Alzheimer’s disease, creating an enormous strain on the health care system, families, and the federal budget. Recognizing this growing crisis, Congress unanimously passed and President Obama signed into law the National Alzheimer’s Project Act (P.L. 111-375). Now, the Secretary of Health and Human Services must thoroughly and expeditiously implement this law by creating a plan to comprehensively address the federal government’s efforts on Alzheimer’s research, care, institutional services, and home- and community-based programs. Learn more at www.alz.org/napa.

Alzheimer's Association advocacy victories

The Alzheimer's Association has a successful history of bringing people together to tackle the challenges of Alzheimer's disease. Our advocate network, together with the Association, is responsible for the following victories over the last decade:

Related information

• Advocacy
• Federal Update
• Advocacy Forum

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