Making the case for more Alzheimer 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 research needs additional investment, the Alzheimer 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 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 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 legislative priorities. Advocates also work with Alzheimer's Association chapters at the local and state levels to pass legislation.
Alzheimer 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.
Sign the petition and learn more about the Breakthrough Ride >>
Back to top
Key legislation we are leading
We are currently working to enact three key pieces of legislation at the federal level:
- The Alzheimer's Breakthrough Act (H.R. 3286/S.1492) — will increase research funding for Alzheimer's disease up to $2 billion at the National Institutes of Health. Currently, Alzheimer research funding is just below $500 million. The bill calls for research for early detection and diagnosis, as well as treatments to prevent and slow the progression of Alzheimer's. In addition, the bill authorizes federal public health and support programs.
- The National Alzheimer's Project Act (S.3036/H.R. 4689) — an act to launch a federal campaign to overcome Alzheimer's disease. The bill will create a coordinated National Alzheimer's Disease Plan, an Alzheimer Project Office and interagency Advisory Council. Drawing on the expertise residing in various government agencies as well as individuals living with the disease, caregivers, providers and other stakeholders, the Advisory Council would provide strategic planning and coordination for the fight against Alzheimer's across the federal government as a whole, touching on a broad array of issues from research to care to support.
- The
Health Outcomes, Planning and Education (HOPE) for Alzheimer's Act (S. 3674/H.R.5926) (formerly ADD-CAP Act) — an act that provides Medicare reimbursement to increase the detection and diagnosis of Alzheimer's disease and other dementias.
Alzheimer 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:
| 2010 |
Elimination of the Social Security Disability (SSDI) two-year waiting period for those diagnosed with younger or early-onset Alzheimer's disease, , giving expedited access to SSDI and Supplemental Security Income (SSI). |
| 2010 | Ensured that the Patient Protection and Affordable Care Act contained provisions to help people with Alzheimer's disease, their families and their caregivers, such as a federal long-term care insurance program. |
| 2009 | Secured an additional $10 billion for the National Institutes of Health (NIH) in the American Recovery and Reinvestment Act ("stimulus bill"). Of the $5 billion awarded so far, the NIH has invested $77 million in Alzheimer grants. The Alzheimer's Disease Neuroimaging Initiative was among the studies to receive funding. |
| 2009 | Helped pass legislation in more than 20 states that brought together individuals with Alzheimer's, state agencies, legislators, care providers and caregivers to develop and implement comprehensive State Government Alzheimer's Disease Strategic Plans. |
| 2005 | Established the leading standard of quality for nursing homes and assisted living by offering practice recommendations and training for professional providers, as part of our Quality Care Campaign. |
| 2004 | Gained inclusion of Alzheimer medicines in Medicare's Drug Formulary (covered drugs). |
| 2003 | Won passage of Medicare's Part D Drug Benefit, which went into effect in 2006. |
| 2001 |
Secured rehabilitation benefits for Medicare beneficiaries with Alzheimer's disease so individuals were no longer denied this coverage. |
| 2000 | Won passage of the Family Caregiver Support Program, included within the Older Americans Act. The program supports a number of community-based programs, including respite care, adult day care, counseling services and caregiver training. |
Related information
Next: Write Congress »
|
|
