Advocate for Change:
Speak Out on Alzheimer’s Disease
Double NIH Funding and End Alzheimer's Disease
Now is the Time to End Alzheimer's Disease. Let Washington Hear Your Voice:
If you are living with Alzheimer’s disease—as a patient, family member, or caregiver—or if you just want to take action to fight this devastating disease, join us!
The more we educate others, the closer we get to stopping a disorder that takes a horrible toll on patients and their families. Alzheimer’s disease is the sixth leading cause of death in the U.S., and the number of patients with Alzheimer’s disease is expected to skyrocket with the aging of the Baby Boomer generation.
Legislators should understand that unless we devote more resources to preventing and treating the disease and supporting family members, the cost to our health care system in dollars and human suffering will be enormous.
Here are some ways to advocate for change. Do as little or as much as you choose. Every act helps.
First Steps You Can Take
Share Information with Your Friends and Community
- Share ADR materials with others at health fairs, support groups, places of worship, or local community or political events. Offer to staff a booth at local events and share the information there.
- Follow us on Facebook, Twitter, and other social media sites. Share what you learn from ADR with friends, and urge them to take action when needed.
- Share a personal story about you or a loved one living with Alzheimer's disease. Stories are powerful tools for educating the public on the urgency of finding a cure. Share your story online, by email, or phone call at 1.800.948.3244.
Advocate for Policy Changes: Let Your Federal and State Legislators Hear Your Voice
- Congress makes important decisions on research funding and federal health programs like Medicare. Know who your U.S. Representative and two U.S. Senators are, and their stand on issues, by visiting www.house.gov and www.senate.gov. From there, you can find the legislators’ official websites, with information on their legislative record, upcoming community forums, and how to reach them by phone, letter, or email.
- Communicate with your U.S. Representative or Senators by sending a message via phone or email, or requesting a meeting at their district or state office. If your meeting is with a staff person to the legislator, don’t be disappointed: key staffers can have great influence with, and may know an issue better than, the Member of Congress. After the meeting, send a thank you letter. Offer to be an information resource for them in the future.
- Many decisions on community services and family supports are made at the local or state level. Know which elected officials represent you by checking the blue government pages of your phone book, or checking your State Legislature website. Learn the officials’ views through their website information, and save their contact information.
- Attend a Town Hall or other local event sponsored or attended by your federal, state, or local representatives. (You may find dates and other event information on their websites.) Ask the officials about their position on ending Alzheimer's disease, and share your story.
Speak Out During an Election Cycle
- The next year is a good time to make Alzheimer's disease part of the conversation in Congress, during the run-up to the Fall 2014 mid-term elections. When candidates or their staff are present, you can:
- Ask what the candidate says about finding a cure for Alzheimer's disease.
- Tell them you and other voters in your state care about ending this disease.
- Talk about the importance of more research and resources.
- Share your story.
- If there is a news story on Alzheimer’s disease, write a Letter to the Editor. Remind the public of the need for more Alzheimer’s disease research and resources. You’ll find instructions on sending a Letter to the Editor, and the maximum word count, on the newspaper’s editorial page or website.
Leaders Converge to Educate Congressional Policy Makers
BrightFocus’ CEO and President Stacy Haller joined other leaders in the LEAD (Leaders Engaged on Alzheimer’s Disease) coalition, to educate congressional policy makers and staff on the urgency of the Alzheimer’s disease crisis and what government can do to help. The June 12, 2014 lunch briefing, “The Rising Threat of Alzheimer’s Disease and the Most Promising Research Efforts to Stop It,” was hosted by the Bipartisan Congressional Task Force on Alzheimer’s Disease.
The panel addressed the prevalence and cost of the disease, in the U.S. and worldwide; the importance of funding more research; and the necessity of incentives to help drive more investment in research and development.
Stacy Haller described how early-stage basic research is bringing us closer to a cure, and why we need a sustained national commitment to scientific discovery.
“Only by understanding how Alzheimer’s starts will we be able to stop it,” she said. She described the range of research projects underway, and why it’s important to support innovative, cutting-edge research. “What these examples have in common,” she noted, “is that they remind us that no discovery path should ever be blocked, no path should ever be discounted.”
She reminded the audience that scientists are very concerned about budget cuts and the future of research. She closed with a question. “We have reason for hope that there is a cure out there for Alzheimer’s. But what if—because we failed to fully fund a true national commitment—we never found it?”
The photo shows the featured speakers. From left: Stacy; Tim Armour, CEO of Cure Alzheimer’s Fund; Dr. David Bennett, Director of Chicago’s Rush Alzheimer’s Disease Center; George Vradenburg, Chairman of USAgainstAlzheimer’s; moderator Ian Kremer of LEAD; and Senator Ed Markey (D-MA).
Update on the National Plan to Address Alzheimer's Disease by 2025
On February 22, 2012, the U.S. Department of Health and Human Services (HHS) issued the first full draft of a National Plan to Address Alzheimer's Disease. HHS updated the plan in March 2013. The plan, a major component of the National Alzheimer's Project Act (NAPA) enacted in 2011, sets a goal of ending Alzheimer's disease by 2025. In April of 2014, HHS released an update reflecting the nation’s progress toward accomplishing goals set in 2012 and current action steps to achieving them. Read the revised plan here.
As the draft process was getting underway, BrightFocus President and CEO Stacy Pagos Haller noted the highlights and the challenges involved. A plan that sets aggressive deadlines and shines a spotlight on research priorities is a major step forward. "Yet we know that to truly conquer this disease, a coordinated effort among non-profits, industry, and the government—and increased funding—is needed," said Haller. Read more.
The public comment period on the plan has now ended. However, to engage in the conversation on the national plan, sign our petition. You can share your thoughts and get breaking news on the latest developments.
Legislation to Support
Urge Congress to Support the Creation of a Global Alzheimer's and Dementia Action Plan (H.Res. 489)
Worldwide, nearly 44 million people are believed to be living with Alzheimer's disease or other dementias. By 2030, if breakthroughs are not discovered, we will see an increase to nearly 76 million. By 2050, rates could exceed 135 million. Every four seconds, a new case of dementia occurs somewhere in the world. The projected costs for caring for people with Alzheimer’s disease is unsustainable.
H. Res. 489 calls upon the United States to lead and support the creation of a Global Alzheimer’s and Dementia Action Plan, which would coordinate international and national efforts to advance research, prevention, public awareness, and support for caregivers, clinical care; support for caregivers; and prevention, public awareness and education.
Urge Your Senators to Support Resolution 303, to Double NIH Funding and End Alzheimer's Disease
As Congress prepares the 2015 budget, act now. Contact your two U.S. senators, using these easy instructions and tell them to support Senate Resolution 303 and a doubling of the NIH budget for Alzheimer’s research.
A bipartisan Senate Resolution 303 introduced by Senators Amy Klobuchar (D-MN) and Susan Collins (R-ME), declares that the goal of preventing and treating Alzheimer’s by 2025 is an “urgent national priority.” Citing the devastating emotional and economic toll that Alzheimer’s takes on families and the nation, the Resolution calls for a doubling of the funding the United States provides on Alzheimer’s research, beginning with a target of $2 billion a year in the NIH budget for Fiscal Year 2015.
Now, supporting Senate Resolution 303 takes on even more urgency. Recent research indicates that death rates from Alzheimer’s disease may be 5-6 times higher than officially estimated, making Alzheimer's the third leading cause of death in the U.S., behind heart disease and cancer. Yet in research funding the U.S. spends only a fraction—one-third of one percent— of what Alzheimer’s costs the nation.
Support the Enactment of the ABLE Act
The Achieving a Better Life Experience (ABLE) Act will allow individuals with physical, intellectual or cognitive disabilities and their families to save their private funds for the future just like every other American. Individuals with disabilities would be permitted to establish ABLE accounts into which they and others could make tax-deferred contributions. ABLE account funds then could be used for essential expenses including medical and dental care, community-based supports, assistive technology, housing and transportation.
Equally important, the legislation will allow family and loved ones of beneficiaries diagnosed with Alzheimer’s disease or a related dementia to contribute to accounts that can be used to pay for the diagnosed individual’s long-term care needs.
ABLE Act Update:
The House of Representatives passed the ABLE Act bill by a whopping 404-17 vote, on December 3, 2014. A vote in the Senate may take place as early as the week of December 8, 2014.
Note, however, that the bill has undergone a key change. It now only applies to people whose disability was diagnosed before the age of 26. This will still affect the Alzheimer’s community, since many individuals with Down syndrome—who would qualify for these accounts—will go on to develop Alzheimer's disease.
ABLE Act advocates are hopeful about the bill’s passage in Congress, where support is widespread and bipartisan. To date, 454 House and Senate lawmakers have co-sponsored the bill. That’s 85% of Congress.
Support the HOPE Act
The Health Outcomes, Planning, and Education for Alzheimer's Act (HOPE Act S.709 / H.R.1507) is a bill to amend title XVIII of the Social Security Act. It would provide Medicare coverage of comprehensive Alzheimer's disease and related dementia diagnosis and services. This would help Americans living with Alzheimer's disease and related dementias by improving detection, diagnosis, and care planning. Read the text of the bill.
Did You Know?
- One person in the United States is diagnosed with Alzheimer's disease approximately every 69 seconds.
- Alzheimer's disease is the 6th leading cause of death in the United States.
- The national cost of Alzheimer's disease (in people over 65 years old) was $183 billion in 2011, and by 2050 it will be $1.1 trillion.
- For a person with Alzheimer's disease, the annual cost of home care is estimated at $76,000, including medical expenses and indirect costs such as a caregiver's time and lost wages.
- The care of an Alzheimer's patient, viewed as custodial care, is not covered by Medicare and most health insurance plans.
- Roughly half of all caregivers are between the ages of 18 and 49, with the average age of the typical caregiver being 48.
Learn more about the statistics concerning Alzheimer's disease.
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Last Review: 08/30/13