Alzheimer's Foundation of America

About AFA

Advocacy Updates

AFA provides periodic advocacy updates designed to give a brief overview of AFA’s advocacy efforts and legislative activity.

May 2012
On May 15, the U.S. Department of Health and Human Services (HHS) unveiled the first-ever “National Plan To Address Alzheimer’s Disease,” as mandated by the National Alzheimer’s Project Act (NAPA). The comprehensive plan calls for the prevention and effective treatment of Alzheimer’s disease by 2025 and lays out strategies related to awareness and education, clinical care standards, long-term care and supportive services for family caregivers, and up-to-date training of healthcare professionals.

In a statement issued immediately after the release of the national plan, Eric J. Hall, president and CEO of the Alzheimer’s Foundation of America (AFA), commended the plan for providing “solid stepping stones toward substantial change. It offers the prospect of transforming the way our nation and the world view Alzheimer’s disease, altering the trajectory of this tragic disease, and changing lives forever. It substantiates the plight of millions of Americans and validates the concerns of generations to come. For the first time, we are making progress toward defeating this public health crisis.”

The final plan was preceded by two draft reports released by HHS and recommendations submitted to HHS by the Advisory Council on Alzheimer’s Research, Care and Services, as well as by the public. The Advisory Council on Alzheimer’s Research, Care and Services is composed of federal and non-federal leaders, including Hall, and has been advising on the development of the plan during the past few months.

What the National Alzheimer’s Plan Means to You

How will the plan impact you as a person with Alzheimer’s disease, caregiver or other family member, healthcare professional, community organization or researcher? What provisions and recommendations may affect you in your day-to-day life?

What the national plan means to all Alzheimer’s disease stakeholders:

Identifying promising research priorities, compressing pathways to bring promising drugs to market, increasing enrollment in clinical trials and accelerating efforts to identify early stages of Alzheimer’s disease;
Increasing resources for Alzheimer’s disease research by $50 million in FY 2012 and a proposed $80 million in FY 2013;
Increasing coordination, participation and collaboration with international partners on Alzheimer’s disease research and awareness;
Adding $26 million to support people with Alzheimer’s disese and their families; and
Enhancing education and public awareness about Alzheimer’s disease through a two-year $8.2 million campaign.

What the national plan means to family caregivers:

Providing easy-to-navigate education about Alzheimer’s disease, with a new government Web site ( www.alzheimers.gov);
Ensuring the development and dissemination of culturally-sensitive education, training and support materials;
Enabling family caregivers to continue providing care while maintaining their own health and well-being by identifying unmet needs and disseminating best practices and evidence-based interventions;
Linking the public to diagnostic and clinical management services for timely and accurate diagnosis;
Taking steps to address the unique challenges of people with young-onset Alzheimer’s disease, Down syndrome, and racial and ethnic groups;
Supporting caregivers in crisis situations;
Assisting families in planning future care needs by eliminating barriers to care and expanding long-term care awareness;
Maintaining the dignity and rights of people with Alzheimer’s disease by educating legal professionals who work with people affected by Alzheimer’s disease and reducing inappropriate use of antipsychotics; and
Assessing and addressing the housing needs of individuals with Alzheimer’s disease.

What the national plan means to healthcare providers:

Building a healthcare workforce to better serve individuals with Alzheimer’s disease, by providing up-to-date training to physicians and other healthcare providers, including tools available to detect cognitive impairment and appropriate assessment processes fr the diagnosis of Alzheimer’s disease;
Increasing incentives to pursue careers in geriatric specialties;
Providing new training for nursing home direct-care workers focused on high-quality, person-centered care;
Establishing a timely and accurate diagnosis standard, which would identify appropriate assessment tools;
Educating and supporting families and caregivers upon diagnosis;
Identifying dementia care guidelines and measures;
Exploring new care models for people with Alzheimer’s disease, including Alzheimer’s-specific medical homes and increased care coordination, ensuring new care models for safe and effective transitions between care settings, identifying models of care for safety in hospitals, and advancing coordinated and integrated long-term care services; and
Improving care for populations disproportionately impacted by Alzheimer’s disease and for populations, like the developmentally disabled and people with young-onset Alzheimer’s disease.

What does the national plan mean to you personally?

We want to hear your “take” on the national plan. Post comments on Facebook. AFA wants to hear from individuals with Alzheimer’s diseases, family caregivers, healthcare professionals and other stakeholders. What does the national plan mean to you personally? How will it impact your life? How will the national plan ease your challenges now and in the future? What is the most beneficial provision(s)? What is the most promising? What other provisions would you like to see? What recommendations need to be implemented first?

The national Alzheimer’s plan is intended to be a living document, reviewed and revised on an annual basis. The Advisory Council will continue to meet and provide plan recommendations. AFA, therefore, encourages continuing input and dialogue from individuals who live with Alzheimer’s disease and related dementias, family caregivers and healthcare professionals to make sure that the plan is responsive to the needs of all Alzheimer’s disease stakeholders.

April 2012
The U.S. Department of Health and Human Services (HHS) on April 13 released its "Second Draft National Plan To Address Alzheimer's Disease."

The nation's first National Alzheimer's Plan is mandated under the National Alzheimer's Project Act (NAPA) enacted last January. This second draft comes in advance of a April 17 meeting of the Advisory Council on Research, Care and Services, which was established by the National Alzheimer’s Project Act (NAPA) to advise on the nation’s first Alzheimer’s plan. The Alzheimer’s Foundation of America’s (AFA) president and CEO , Eric J. Hall , is a member of the advisory council.

In March, AFA submitted its “The Time to Act is Now” report in response to the first draft of the national plan that was released in February 2012, and to further expand upon AFA’s stance on strategies to attack the Alzheimer’s crisis. AFA will be reviewing the second draft and will provide input at the Advisory Council meeting.

It is expected that HHS will be releasing the final National Plan to Address Alzheimer’s Disease the second week in May.

February 2012
Innovations in Therapies Act (SPRINT)

United States Senators Barbara Mikulski (D-MD) and Susan Collins (R-ME) and Representatives Christopher Smith (R-NJ) and Edward Markey (D-MA) introduced legislation on February 2 that seeks to spur and accelerate a cure or treatment for Alzheimer's disease and other high-cost chronic conditions by expediting the discovery of new therapies and speeding their development and review.

Specifically, the Spending Reductions through Innovations in Therapies (SPRINT) Agenda Act of 2012 will:

Support promising advanced research in Alzheimer's disease and other high-cost conditions focused on therapies most likely to improve health and reduce federal health care costs.
Make targeted public investments in the most promising research through a partnership between the Department of Health and Human Services and non-governmental and non-profit venture entities with proven track records and expertise in developing and bringing therapies to market.
Direct funding to goal-oriented and milestone-driven research initiatives.
Streamline the Food and Drug Administration review process of therapies developed through the program to cut the length and cost of the pipeline.

In a statement, Eric J. Hall, AFA’s president and chief executive officer, said that AFA proudly supports the SPRINT Act and applauds the bill’s sponsors “for recognizing the dire need to expedite the discovery of promising, effective treatments for Alzheimer’s disease and other costly chronic illnesses.”

Further, the statement said, in part, the SPRINT Act offers “the promise of reduced healthcare costs to government and society, and, moreover, improved quality of life for Americans with chronic diseases and their caregivers…Now is the time to push the SPRINT Act forward. Now is the time to capture the momentum gripping our nation and offer long-awaited hope to current and future generations.”

AFA is encouraging the public to contact their respective members of Congress to urge support of the SPRINT Act.

CLASS Act

The U.S. House of Representatives on February 1 voted to repeal the Community Living Assistance Services and Supports (CLASS) Act, which would have created a disability insurance program financed through voluntary payroll deductions for adults to pay for long-term services and supports. The repeal effort now shifts to the Democratic-controlled Senate where its fate is uncertain.

AFA is among more than 50 national groups that signed on to a letter urging leaders of representatives to reject legislation, H.R. 1173, to repeal CLASS. Earlier, it had successfully advocated for passage of CLASS as part of the new healthcare reform law.

January 2012

National Alzheimer’s Plan

The Advisory Council on Alzheimer's Research, Care and Services, established by the National Alzheimer’s Project Act (NAPA), met on January 17 and 18 in Washington, DC to review the goals and strategies contained in a draft framework for a comprehensive national plan to address Alzheimer’s disease.

Much discussion centered on the major goal in the draft that calls for finding an effective treatment for Alzheimer’s disease by 2025. Some council members urged an acceleration of that goal to 2020. Others questioned the reality of finding a cure in such a relatively short period of time and suggested prioritizing areas of research.

There was a consensus, however, on the need for accountability and measurable goals as the plan is implemented.

Other discussion related to the need for public awareness campaigns for both the public and professionals, as well as innovative federal-private partnerships to help fund promising research and new delivery models to promote efficiencies and innovation within long-term care services.

After the meeting, Eric J. Hall, AFA’s founding president and CEO, and a member of the Advisory Council, praised the efforts to date.

In a statement, Hall said, in part, “Our nation is placing an intense and unprecedented focus on Alzheimer’s disease right now, giving hope to Americans that the bold recommendations and thoughtful discussion that emerged during his meeting of the Advisory Council and ongoing will result in a powerful plan that turns the tide of the disease.”

In addition, he said, “Since fiscal concerns and the growth of the Alzheimer’s population cannot go unnoticed, it is critical that we design this plan with incremental, fundable and attainable goals, which include substantially increasing our scientific knowledge surrounding the disease; preventing, delaying and slowing progression of symptoms; researching and implementing best practices of care; providing much-needed support services for families; and ultimately obtaining the cure we are all waiting for.”

As the process toward a national plan moves forward, the U.S. Department of Health and Human Services (HHS) will accept comments on the framework until February 8. It expects to release a draft plan the third week of February and a final plan in late spring. AFA is soliciting comments to supplement its report "No Time to Waste,” which provides recommendations for a national plan. To weigh in on the draft framework, contact AFA at info@alzfdn.org or submit comments directly to HHS at NAPA@hhs.gov.

CLASS Act

AFA is among more than 50 national groups that have signed on to a letter urging leaders of the U.S. House of Representatives to reject legislation, H.R. 1173, to repeal the Community Living Assistance Services and Supports (CLASS) program. The January 31 letter was organized by the Eldercare Workforce Alliance, of which AFA is a member.

The letter emphasized that Medicare does not cover long-term services and supports (LTSS). Yet, about 70 percent of people 65 or older will require some type of LTSS at some point during their lifetime, and they face a lack of financing options to help them plan and pay for the services they need to live independently in their homes and communities. CLASS would create a disability insurance program financed through voluntary payroll deductions for adults to pay for LTSS.

The organizations noted that CLASS would “give millions of working Americans a new option to take personal responsibility and help plan and pay for these essential services. CLASS could also take some financial pressure off Medicaid at the state and federal levels… For us, this is about the financially devastating impact that the need for LTSS has on families across this country every day and the essential, compelling and urgent need to address this issue.

November 2011

National Alzheimer’s Plan

More than 40 of the nation’s leading voices and organizations in Alzheimer’s research, drug discovery and care on November 1announced a series of aggressive and innovative recommendations to transform the current trajectory of Alzheimer’s disease, now slated to kill millions of Americans and to cost the nation over two trillion dollars in the coming decade.

The recommendations by Leaders Engaged on Alzheimer’s Disease (LEAD), a coalition co-convened by AFA and USAgainstAlzheimer’s, are directed to the Congressionally-mandated Advisory Council on Alzheimer’s Research, Care, and Services – the committee tasked with advising on the first-ever national action plan to deal with the growing Alzheimer’s disease crisis.

To significantly advance progress in Alzheimer’s research, care and prevention, the experts who prepared the LEAD report propose the following vital recommendations:

Triple the amount of funding for Alzheimer’s disease research.
Create incentives to drive investment in new Alzheimer’s disease therapies through enhanced market exclusivity for companies delivering treatments to market, development of large-scale patient registries to reduce the time and cost of recruiting thousands of individuals to clinical trials, and focusing attention on the development of qualified biomarkers to shorten the time needed to assess the effectiveness of new drug candidates.

Reduce healthcare costs and improve quality of care for people with Alzheimer’s disease by implementing at a national level proven models of caring for individuals with the brain disorder and their caregivers, developing critical assistive tools and services for family caregivers, and adequately reimbursing healthcare professionals for improved high quality care.

Establish a dedicated fund at the U.S. Department of Health and Human Services (HHS) to invest with private investors in new start-up drug discovery companies that are developing innovative treatments and therapies with the best likelihood for reducing Medicare and Medicaid spending on Alzheimer’s disease care.

Prepare for the explosion in Alzheimer’s cases by building a healthcare workforce skilled in the care of people with the disease and by ensuring that adequate and effective services and support care are accessible to all families coping with the disease.

Click here to read the entire report.

Federal Deficit Reduction Efforts

The Joint Select Committee on Deficit Reduction or “Supercommittee” continues its work, due to be completed by November 23, on a proposal that would reduce the deficit by $1.5 trillion over the next 10 years, including options to make changes to Medicare, Medicaid, and Social Security.

A majority “yes” vote is required for any plan to be approved in committee, which would then be sent to both houses of Congress for a vote. However, if the plan is defeated either in the supercommittee or Congress, a “trigger mechanism” would go into effect. This would automatically cut spending by $1.2 trillion, with half coming from defense programs and the other half coming from discretionary programs, which could include cuts to services within the Older Americans Act. It would also include a two percent cut to Medicare; Social Security and Medicaid would remain untouched.

AFA has been actively meeting with Congressional staff with our partners in the Leadership Council of Aging Organizations (LCAO) to reiterate the importance of Medicaid for millions of older adults and people with disabilities.

AFA recently signed onto a letter organized by the Partnership to Fight Chronic Disease (PFCD), urging Congress to consider how changes in eligibility requirements in programs like Medicare and Medicaid, increasing out-of-pocket costs for participants, and squeezing reimbursement to providers of health care goods and services have historically failed to contain costs to the system.

Click here to read the PFCD letter.

Reauthorization of the Older Americans Act

Work continues in Congress on the reauthorization of the Older Americans Act (OAA), a vital set of programs, including the National Family Caregiver Support Program, that benefit older adults.The 2012 fiscal year, on which the U.S. Government operates, began on October 1, 2011. Congress has yet to pass a budget for the full fiscal year 2012, which began October 1, and continues to fund the government, including OAA programs, through short=term extensions or Continuing Resolutions (CRs). The current CR expires on November 18, 2011.

On this issue, the Administration on Aging (AoA), which administers OAA. has recommended a set of principles to guide reauthorization. Click here to read the principles.

In addition, on November 1, AFA signed a letter organized by the Leadership Council of Aging Organizations, to members of the House and Senate Appropriations Committees urging them to strengthen and support OAA programs as they move forward in the appropriations process. Click here to read the letter. Also, click here to view a fact sheet on the Older Americans Act.

October 2011

National Alzheimer’s Plan

Declaring that our nation “has no time to waste,” AFA on October 20 released specific, hard-hitting recommendations on both care and cure to tackle Alzheimer’s disease—and urged swift implementation of a national strategy on this growing public health crisis that threatens an increasing number of American families, including aging baby boomers, and the nation’s budget.

Entitled “No Time to Waste,” the report urges a “bold but practical” approach and calls for formulating solutions within—as well as outside of—current government programs to ultimately “defeat” Alzheimer’s disease.

AFA’s recommendations for research, clinical care and long-term care come as national experts are examining what to include in an “integrated national plan” as mandated under the new National Alzheimer’s Project Act (NAPA), and as the incidence of the brain disorder in the United States is expected to explode by mid-century.

To effect long-lasting change, the report urges wide-scale public awareness campaigns, including messaging to drive earlier detection and to “shift the focus from fear to acceptance of the disease.”

Other calls for action include: a substantial investment in research toward the prevention, treatment, care and cure of Alzheimer’s disease; additional dementia training and reimbursement for primary care clinicians; and greater training and support for family caregivers of all demographics across the continuum of care.

“NAPA is a once-in-a-lifetime opportunity to change the conversation about this devastating illness—but we must do it right,” said Eric J. Hall, AFA’s founding president and CEO and the report’s author.

The report incorporates AFA’s own beliefs and feedback shared with AFA by its 1,600 member organizations, family and professional caregivers, and experts over the past few months.

Click here to read “No Time to Waste.”

CLASS Act

U.S. Health and Human Services (HHS) Secretary Kathleen Sebelius announced that the Obama Administration plans to postpone implementation of the Community Living Assistance Services and Supports (CLASS) Act due to concerns over the program’s long-term solvency.

CLASS, which passed as part of healthcare reform, is a voluntary, government-backed program funded by contributions from working adults either directly or through their employer via payroll deductions designed to expand options for people who someday may require long-term services and supports.

AFA recently signed onto a letter to leaders in the House and Senate opposing repeal of the CLASS Act. AFA also organized an online campaign asking individuals to write their own members of Congress to oppose repeal.

August 2011

Alzheimer’s Foundation of America CEO Appointed to National Advisory Council on Alzheimer’s Research, Care and Services; Asks for Additional Input on National Alzheimer’s Plan

The Alzheimer’s Foundation of America (AFA) is pleased to announce that Eric J. Hall, AFA’s founding president and chief executive officer, was appointed yesterday to the National Advisory Council on Alzheimer’s Research, Care and Services as established by the National Alzheimer’s Project Act.

Hall is among 12 federal and 12 non-federal designees tasked with providing the U.S. Secretary of Health and Human Services (HHS) with input on the National Alzheimer’s Project, which will coordinate government efforts to prevent and treat the disease as well as create a national strategy for defeating Alzheimer’s disease. The National Alzheimer’s Project Act was passed by Congress in December 2010 and signed into law by President Obama in January 2011.

The advisory council will provide an initial evaluation of all federally funded efforts in Alzheimer’s disease research, clinical care, and long-term services and supports and their outcomes; recommendations for priority actions to expand, eliminate, coordinate or condense programs; recommendations to reduce the financial impact of Alzheimer’s disease on Medicare and other federally funded programs as well as on the families living with Alzheimer’s disease; and recommendations to improve health outcomes.

In an official statement released after the government announcement, Hall thanked Secretary Kathleen Sebelius for the appointment and thanked President Obama, his Administration and the Bi-partisan Congressional Task Force on Alzheimer’s Disease for their “unwavering support” of NAPA implementation.

”It is an honor to have a seat at this important table and to represent the Alzheimer’s Foundation of America’s more than 1,600 member organizations throughout the United States,” Hall said. ”This new advisory council is a signal to the American people that leaders in their government are ready to tackle this horrible disease head-on.”

AFA has been collecting feedback from its member organizations and the public for several months regarding a national strategy. Building on the momentum of a successful national conference call on August 10, Hall will hold a second “listening session” national conference call on Monday, September 12 at 3 p.m. (ET) and asks for your participation.

In his new role as a member of the National Advisory Council on Research, Care and Services, Hall will solicit your ideas related to clinical care, research, long-term care and drug development, and then share these comments with the advisory council, as well as staff at the White House and the HHS.

Questions that Hall will ask include:

 What are your thoughts on ways primary care doctors and specialists can more effectively diagnose Alzheimer’s disease or a related dementia?

 What ideas do you have in the area of increased funding for Alzheimer’s disease research and drug development?

 As someone who has experienced this disease first-hand, what other messages or ideas do you want to share with the White House and HHS?

“I intend to make the most of this opportunity to represent the millions of individuals nationwide who devote their lives to care and cure,” Hall further noted in his statement. “By coming together to find practical solutions, we will make meaningful change a reality.”

Join us: To participate in the conference call, please RSVP to Shane Austin, AFA’s public policy specialist, at saustin@alzfdn.org by September 12 at 10 a.m.

Then at 3 p.m. (ET) on September 12, call (toll-free) 888-324-9356 and enter pass code: 4475639#.

Sound off! From August 8 through September 2, members of Congress will head home to speak directly to constituents like you through town halls (public forums) and other local events that offer citizens a chance to share their thoughts with and ask questions of their local representatives.

The Alzheimer’s Foundation of America (AFA ) encourages you to participate in the democratic process and make your voice heard on issues that affect the Alzheimer’s community by attending one of these events. We are providing a fact sheet that you can take with you to use as a guide on the issues and to give to a congressional staffer . In addition, we encourage you to ask questions and tell your personal stories.

Here’s how to be heard:

1) Go to alzheimers.rallycongress.com and “Find Your Lawmakers” by entering your zip code in the space provided or by clicking on the “Browse by State” link. This will bring up a list of your representative and your state’s two senators.

2) Click on the member’s name. Here you can visit the member’s official Web site a nd Facebook and Twitter pages , which list details of local events. Also, check local newspapers and television stations since media outlets often list these events.

3) Pick an event or location that works best for you, take the fact sheet and speak up on some or all of these issues, and make your voice heard by telling your personal story! A congressional staff member will likely be in attendance and you can leave the fact sheet with th at person.

June 2011

Eric J. Hall, AFA’s founding president and chief executive officer, was invited to testify on June 23 before the United States House Committee on Foreign Affairs Subcommittee on Africa, Global Health, and Human Rights on “Global Strategies to Combat the Devastating Health and Economic Impacts of Alzheimer’s Disease.” Click here to read his oral testimony and click here to read his written testimony.

May 2011

Some of the most pressing issues currently being debated in Congress that would affect the Alzheimer’s community revolve around cuts in the Fiscal Year 2012 federal budget that could include drastic changes to Medicare and Medicaid.

The House of Representatives has already approved a FY 2012 budget that would block grant and cut Medicaid by almost $1.4 trillion over the next 10 years. Block granting, in essence, means that the federal government would reduce its liability to state Medicaid programs by providing each state with a set lump sum for their programs. It would also allow governors greater freedom in how they spend those federal dollars. However, with no guarantee for additional federal help if state Medicaid budgets fall short, millions of men, women, children, and the elderly who may be poor or disabled may lose healthcare that has always been guaranteed by the federal government.

The House-passed budget would also drastically change Medicare by turning it into a voucher program that would force seniors into the private health insurance market. The Senate recently rejected a similar proposal, causing members of both political parties to look for compromises.

Budget negotiations are currently taking place, and recent public backlash against the proposed Medicare cuts has led many advocates in Washington to believe that Congress, in its efforts to reduce the deficit, may shift its budget cutting axe to Medicaid instead.

This would be devastating to the millions of vulnerable seniors, including those with Alzheimer’s disease, who rely on Medicaid for costly long-term care.

Noting that this could prove devastating to the millions of vulnerable seniors, including those with Alzheimer’s disease, who rely on Medicaid for costly long-term care, AFA has been active in opposing cuts to Medicare and Medicaid. Among its efforts, AFA has met with Congressional staff with our coalition partners in the Leadership Council on Aging Organizations (LCAO). Click here to read the LCAO letter signed by AFA that was delivered to members of the U.S. Senate opposing the FY 2012 House Budget Resolution.

TAKE ACTION!

Click here to voice your opinion about the importance of Medicare and Medicaid directly to your members of Congress.

April 2011

Federal Budget Update
Averting a shutdown of the federal government, President Obama and Congressional leaders agreed on a budget for the remainder of Fiscal Year 2011, which ends September 30. The agreement includes $38 billion in spending cuts from FY2010 levels, including $16 million from the Administration on Aging. AFA, through our coalition partners at Leaders Engaged on Alzheimer’s Disease (LEAD) recently sent a letter to Senate Majority Leader Harry Reid (D-NV), signed by more than 480 Alzheimer’s researchers and advocates, urging Senate leadership to oppose any budget cuts to the National Institutes of Health (NIH) and the National Institute on Aging (NIA), the leading agency for Alzheimer’s disease research. (1) Click here to read the letter and (2)here to read the press release. On to 2012, House Budget Committee Chairman Paul Ryan (R -WI) recently put forth his version of a FY2012 budget that would make huge cuts in both Medicare and Medicaid and drastically change both programs, shifting more costs onto beneficiaries. AFA will continue to monitor ongoing negotiations and will actively defend programs and services that directly affect individuals with Alzheimer’s disease and their caregivers.

AFA Supports Health Outcomes, Planning and Education for Alzheimer’s Act
Congressmen Ed Markey (D-MA) and Chris Smith (R-NJ) re-introduced the Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act. The bill would establish a new benefit for Medicare beneficiaries for diagnostic and care planning services specifically for Alzheimer’s diseases and related dementias and would create a Medicare reimbursement for doctors with the goal of increased detection. It is estimated that nearly 50 percent of dementia cases are missed or misdiagnosed by primary care doctors. Earlier detection of cognitive impairments benefit the individual, the family and other caregivers by enabling the person to begin treatment and allowing conversations about medical and personal decisions to occur at an earlier stage in the disease.(3) Click here to read AFA’s letter of support.

Bill Introduced to Establish Alzheimer’s Research Bonds
Congressman Michael Burgess, M.D. (R-TX-26) recently re-introduced the Making Investments Now for Dementia (MIND) Act in the House. In a time when calls for federal budget cuts are growing louder, the MIND Act would provide a new way to finance Alzheimer’s disease research by the issuance of United States Alzheimer’s Bonds, much like the bonds sold during World War II. Funds from the sale of the bonds would be directed to the National Institutes of Health for the sole purpose of funding Alzheimer’s research. In noting AFA’s support, Eric J. Hall, AFA’s president and founding CEO, said, “Since Alzheimer’s disease is such a threat to American families, we need to find creative ways to direct as much research into the disease as possible. Using the ‘war bond’ model of World War II, the MIND Act would offer all Americans the opportunity to invest in the promise of Alzheimer’s disease research funding and impact the future of our aging population.” (4) Click here to read AFA’s letter of support.

Free Medicare Annual Wellness Exam Benefit Takes Effect
As a part of the new health reform law signed by President Obama last year, a new benefit for Medicare beneficiaries became available in January. The new annual wellness visit, aimed at prevention and early detection, will be provided free with no deductibles or co-pays. Because of AFA’s efforts, the exam includes the “detection of any cognitive impairment,” which is a new and much-needed provision to promote early identification of memory problems. (5) Click here for more information about the Medicare Annual Wellness Exam. AFA is also currently working with staff at the National Institute on Aging( NIA) and the Centers for Medicare and Medicaid Services(CMS) to urge the United States Preventive Services Task Force (USPSTF) to recommend a screening tool for physicians to use to perform the exam.

AFA Works to Implement Historic Alzheimer’s Legislation
In January, AFA celebrated a major legislative victory when President Obama signed the National Alzheimer’s Project Act (NAPA). The new law will create the first national effort by the U.S. government to address the Alzheimer’s disease crisis. NAPA will establish the National Alzheimer’s Project in the office of the Secretary of the Department of Health and Human Services and it tasks the Secretary with creating and maintaining an integrated plan to overcome Alzheimer’s disease by coordinating research and services across all federal agencies. (6) Click here to read AFA’s statement on NAPA’s passage. The law also calls for the creation of an inter-agency advisory council; AFA CEO Eric J. Hall has requested to serve as a member. AFA continues to monitor and provide expertise during the implementation phase of NAPA along with our coalition partners involved in Leaders Engaged on Alzheimer’s Disease (LEAD). (7) Click here to read the legislation.

December 2010:

As part of AFA’s campaign to focus the nation’s attention on care and coinciding with its inaugural “Together for Care” telethon on December 4, AFA encouraged Americans to sign a petition urging President Obama and Congress to declare a “decade of care” for individuals with dementia and their families. “In the absence of a realistic short term prospect for a cure,” the petition calls for “creating a comprehensive strategy that includes competent, cost-effective care for individuals with Alzheimer's disease and related dementias, and support and training for their family caregivers.”

AFA further sounded its message about the urgency of increased attention to and funding for research and care when Eric J. Hall, AFA’s president and CEO, was invited to appear before Congressional committees focusing on Alzheimer’s disease.

On December 8, Hall participated in the United States Senate Special Committee on Aging Forum entitled “Until There’s a Cure: How to Help Alzheimer’s Patients and Families Now.” In providing comments after panel members gave their remarks, Hall respectfully asked the committee to further explore the federal investment in aging research and to support increased resources at the National Institute on Aging, as well as focus on the need for caregiver support services and professional training. Click here to read Hall’s comments. Click here to view forum.

On December 9, Hall presented testimony before the United States House Committee on Energy and Commerce Subcommittee on Health at a hearing titled “Alzheimer’s Disease: The Ongoing Challenges.” In his remarks, Hall said, “Increased investment in preventing, treating or curing chronic diseases of the aging, such as Alzheimer’s disease, is perhaps the single most effective strategy in reducing national spending on health care.” Click here to read complete testimony.

AFA issued a statement regarding passage of the National Alzheimer's Project Act by the House of Representatives on December 15 and the Senate on December 8. The National Alzheimer's Project Act would create the National Alzheimer's Project, which would coordinate government efforts to prevent and treat the disease and create a national strategy for defeating Alzheimer's disease. In September, the Alzheimer's Foundation of America had organized a sign on letter effort in support of H.R. 4689 and S. 3036, receiving the support of more than 100 organizations. Click here to read statement.

In December, AFA organized a letter to Francis Collins, M.D., Ph.D., director of the National Institutes of Health, in support of $1.4 billion in funding for the National Institute on Aging (NIA) in the FY 2012 federal budget. The letter was signed by 436 researchers, educators and clinicians in aging and Alzheimer's disease from across the country, and was hand delivered to Dr. Collins in mid-December at a meeting AFA organized with the Alliance for Aging Research, American Geriatrics Society, Friends of the NIA, Geoffrey Beene Gives Back© Alzheimer's Initiative, Gerontological Society of America, and USAgainstAlzheimer's.

October 2010:

AFA’s Advocacy Office in Washington, DC has been involved in a number of activities the last several months to support the interests of individuals with Alzheimer’s disease and related illnesses, and their family caregivers, as health reform implementation moves forward.

In May, AFA submitted comments to the survey and certification department at the Centers for Medicare & Medicaid Services (CMS) regarding dementia training that was included in the nursing home transparency provisions in health reform. Health reform legislation expanded the definition of nurse’s aide to include contract staff and requires dementia and abuse prevention training in initial and potentially ongoing training. Click here to read AFA’s comments.

In June, AFA organized a sign on letter from more than 175 national and local organizations and public safety agencies in support of Senate Judiciary Committee passage of H.R. 908, a bill to reauthorize the Missing Alzheimer’s Disease Patient Alert Program—a Department of Justice program that awards grants to national organizations that work to identify and locate missing persons with dementia.

H.R. 908 clarifies that the Missing Alzheimer’s Disease Patient Alert is an open, competitive grants program; changes the Missing Alzheimer’s Disease Patient Alert Program to a multi-grant program; directs administration of grants to the Bureau of Justice Assistance (BJA); and authorizes appropriations for the program at $5 million per year through 2016. Click here to read the sign on letter. As a result of AFA’s efforts, the Senate Judiciary Committee passed the bill on June 24 by a vote of 14 to 5; it is now awaiting a vote on the Senate floor. The House passed H.R. 908 in February 2009.

In July, AFA organized a sign on letter through the Leaders Engaged in Alzheimer’s Disease (LEAD) coalition, which is composed of more than 30 members and organizations, in support of $150 million, and no less than $50 million, for the Cures Acceleration Network (CAN) in both the Senate and House Labor-HHS-Education FY2011 appropriations bills. CAN is an important component of health reform that is intended to speed the development of new treatments for serious and costly diseases such as Alzheimer’s disease. CAN seeks to cut the time between discovery and development of drugs and therapies through new grant-making mechanisms at the National Institutes of Health (NIH). As a result of advocacy efforts in support of CAN funding, both the Senate and House have included $50 million in appropriations for CAN, and these bills will be taken up later this year. Click here to read the sign on letter.

In late August, AFA submitted comments to the CMS regarding the proposed definition of “detection of any cognitive impairment” in the new annual Medicare wellness exam, which was passed as part of health reform. The comments advocated for “performance of a brief cognitive screening test to assess the individual’s memory and other intellectual functions and to indicate whether additional evaluation is necessary.” AFA’s comments were supported by seven national organizations, including the American Academy of Neurology. Final regulations on this provision will be released by CMS in November. Click here to read AFA’s comments.

In September, AFA organized a letter to the Office of Management and Budget (OMB), the department within the Executive Office of the President that is responsible for overseeing the preparation of the federal budget each year. The letter, signed by more than 20 national organizations, urges OMB to include $1.4 billion, an increase of $300 million, in the Administration’s proposed FY 2012 Budget to support research efforts led by the National Institute on Aging (NIA). This was the first time organizations worked together on an OMB strategy to request an increase in NIA funding. Click here to read the letter to OMB.

Also in September, AFA organized a sign on letter effort in support of S. 3036 and H.R. 4689, the National Alzheimer’s Project Act, sponsored by Senator Evan Bayh (D-IN) in the Senate and Representative Ed Markey (D-MA) in the House. The National Alzheimer’s Project Act would create the country’s first national office responsible for leading government efforts to treat and prevent Alzheimer’s disease. Located within the Department of Health and Human Services, the National Alzheimer’s Project Office would coordinate and oversee federal research on Alzheimer’s disease to develop a plan to combat the disease and to eventually develop a cure. The Office would be funded within the existing budget of the Department of Health and Human Services and would not require an appropriation. AFA is pushing for this legislation to be marked up in both chambers before the end of the 2010 session. Click here to read the letter of support.

March 2010:

President Signs Health Reform into Law;
Read Q&A About Impact on Dementia Population

The Alzheimer’s Foundation of America issued the following statement on the health reform legislation that was signed into law by President Obama on March 23, 2010:

“The Alzheimer’s Foundation of America (AFA) is extremely pleased that the historic health reform signed into law by President Obama late this morning, after passing the U.S. House of Representatives on Sunday and the Senate in December, includes a number of provisions that are especially significant for AFA's constituents—and bode well for improving quality of life for individuals with Alzheimer’s disease and related dementias, and their family caregivers. In particular, we are grateful that the final action addresses many of the practical and financial needs faced daily by this population, speaks to preventative issues and bolsters training of dementia care professionals.

“In sync with our mission of 'caring for the nation,' AFA strongly advocated for these meaningful provisions:

Inclusion of 'detection of any cognitive impairment' in the new annual wellness exam for Medicare beneficiaries is a new and much-needed provision for early identification of memory problems or Alzheimer’s disease and related dementias. AFA was the sole organization pushing for this important benefit.

The Nursing Home Transparency Act enhances American families’ access to information about the quality of care in nearly 16,000 nursing homes that receive $75 billion a year in Medicare and Medicaid funds, and will improve the government’s ability to ensure quality care and better-trained staff at those facilities. AFA was the lead organization on this effort with NCCNHR: The National Consumer Voice for Quality Long-Term Care.
Independence at Home Act demonstration provides home-based coordinated care for high-cost Medicare beneficiaries with two or more chronic conditions, which, studies show, can reduce healthcare expenditures, improve quality of care and enhance health outcomes. AFA advocated for this demonstration in coalition with more than 30 national organizations, including: AARP, American Academy of Neurology, National Council on Aging, and Visiting Nurses Association of America.
The Elder Justice Act strengthens the network of agencies that investigate abuse and neglect in facilities and in the community, including improving the training of long-term care ombudsmen and state health inspectors, requiring reporting of neglect and abuse, and ensuring that residents are protected when nursing homes close. This effort was supported by hundreds of national and local organizations through the Elder Justice Coalition, of which AFA is a member.
Background checks in long-term care facilities for employees with direct-patient access gives families greater assurance that their loved ones are safe because it will require these employees to pass a background check for previous criminal activity and abuse. This effort was supported by hundreds of national and local organizations through the Elder Justice Coalition, of which AFA is a member.
The CLASS Act creates a disability insurance program financed through voluntary payroll deductions for adults who become unable to perform at least two activities of daily living, and provides a much-needed benefit to help obtain services and supports, while providing disabled individuals more choices and opportunities to live and participate in their communities. AFA supported this legislation through a national coalition effort organized by the National Council on Aging and the American Association of Homes and Services for the Aging.
Direct care training funding over three years will help to establish new training opportunities for direct care workers that provide long-term care services and supports. AFA worked on this effort with the Direct Care Alliance and PHI.
Geriatric workforce provisions authorize funding to geriatric education centers to support training in geriatrics, chronic care management and long-term care for faculty in health professions schools and family caregivers; develop curricula and best practices in geriatrics; expand the geriatric career awards to advanced practice nurses, clinical social workers, pharmacists and psychologists; and establish traineeships for individuals who are preparing for advanced education nursing degrees in geriatric nursing. AFA advocated in support of these provisions as a member of the Eldercare Workforce Alliance, a national coalition of 28 organizations, including AARP, American Geriatrics Society, and the American Psychological Association.
Clinical Trials Provision prohibits insurers from dropping coverage because an individual chooses to participate in a clinical trial and from denying coverage for routine care that they would otherwise provide just because an individual is enrolled in a clinical trial for the treatment of life-threatening diseases. AFA was the only Alzheimer’s disease and related dementias organization that signed on in support of this provision.

“Several other provisions that passed as part of health reform will also be of great help:

Provides assistance to Medicare beneficiaries in the 'doughnut hole' or gap in prescription drug coverage.

Ends insurance company practices of discriminating and denying coverage based on pre-existing conditions, health status or gender.
Eliminates co-pays for preventative Medicare benefits.”

November 2009: Health Reform Moves Forward

It has been a busy fall for health reform as legislation in both the U.S. House of Representatives and Senate has moved forward.

The House passed its comprehensive health reform bill in a tight vote on Saturday, November 7, by a 220-215 margin. The measure spends $1.01 trillion over a decade to provide health insurance to an additional 36 million Americans and creates a new public insurance plan to compete with private insurers by 2013. It requires most Americans to carry insurance, creates a new exchange where they can shop for it and gives the lowest earners tax credits to help them pay for it. Click here for information about AFA’s policy priorities in health reform.

In the Senate, Majority Leader Reid (D-NV) released the Patient Protection and Affordable Care Act on November 18, and the Senate voted a few days later to proceed with debate on the bill starting the week of November 30. The bill includes a number of AFA-supported provisions, including: the Independence at Home Act pilot project; inclusion of “detection of any cognitive impairment” in the new annual wellness exam for Medicare beneficiaries; direct care training; geriatric workforce provisions; the Nursing Home Transparency Act; background checks in long-term care facilities for employees with direct-patient access; the Elder Justice Act; and the CLASS Act. Click here to see AFA’s letter of support for the Patient Protection and Affordable Care Act and to learn more about how these issues would help individuals with Alzheimer’s disease and related dementias and their family caregivers.

AFA will continue to seek additional geriatric workforce provisions in the Senate bill through the amendment process—and we’ll fight to keep our priority issues in the bill. Senate leaders hope to have a final vote on the bill before Christmas.

Alzheimer’s Treatment and Caregiver Support Act

Senator Kirsten Gillibrand (D-NY) and Representative Maxine Waters (D-CA35th) introduced the Alzheimer’s Treatment and Caregiver Support Act (S. 2809 and H.R. 4123) on November 19. This legislation would provide grants to public and non-profit organizations to improve treatment for individuals with Alzheimer’s disease, and expand training and support services for caregivers. Notably, it would promote a comprehensive approach to care that involves families and caregivers in the treatment of individuals with Alzheimer’s disease, with appropriate consideration of their language and culture. AFA endorses this legislation and will continue to work to increase support from additional co-sponsors as well as from state and local organizations.

Resolution in Support of National Alzheimer’s Disease Awareness Month and National Memory Screening Day

Representative Waters also introduced H.Res.910, a resolution supporting the goals and ideals of National Alzheimer’s Disease Awareness Month and National Memory Screening Day, including the development of a national health policy on dementia screening and care. The resolution was introduced on November 17 to coincide with National Memory Screening Day 2009, an annual event sponsored by AFA. AFA’s efforts originally got a boost in June when Senator Mark Warner (D-VA), co-chair of the Congressional Task Force on Alzheimer’s Disease, introduced S.Res.185. AFA appreciates Senator Warner’s and Congresswoman Waters’ leadership in empowering individuals with memory concerns to better manage their own health and improve their quality of life.

2009 Advocacy Agenda

As the leading national advocacy organization focused on the “here and now” issues that face individuals with Alzheimer’s disease and their family caregivers, AFA is right in the thick of the “here and now” of health care reform currently being debated on Capitol Hill. Through our Public Policy Office in Washington, DC and the activism of our more than 1,200 member organizations, AFA is aggressively pushing for the inclusion in final legislation of proposals that would have a direct impact on individuals with dementia—greatly improving the cost, delivery and quality of care.

AFA’s current public policy agenda includes:

Effective national health care reform, including

More resources for treatment and caregiver support services related to Alzheimer’s disease

Expanded programs to help find missing persons with dementia

Fully-funded respite care services

Falls prevention research and programs

Elder abuse prevention

Consumer rights protections

Add Your Voice
We encourage you to add your voice on these issues. Phone or write an e-mail or letter to your members of Congress, and let them know where you stand. To find contact information for your members of Congress, visit www.senate.gov and www.house.gov.

Alzheimer's Foundation of America 866.AFA.8484
www.alzfdn.org