Alzheimer's Foundation of America

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Advocacy Updates 2013

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

April 2013
Federal members of the Advisory Council on Alzheimer's Research, Care, and Services disclosed at their April 29 meeting in Washington, DC that the updated version of the "National Plan to Address Alzheimer's Disease" will be released in mid-May.

While officials said that the U.S. Secretary of Health and Human Services is still reviewing recommendations from the council's last meeting in January and proposals submitted by other stakeholders, including the Alzheimer's Foundation of America's "Time to Build" report, they did offer a preview of the revised plan. Among the new action steps will be:

* requiring a unified Alzheimer's disease curricula for primary care physicians;
* further engaging public health departments on brain health;
* developing new measures for high quality caregiver services;
* coordinating greater caregiver support with the Department of Veterans' Affairs; and
* preventing elder abuse both at home and in long-term care facilities.

Senate Aging Committee Hears Progress of National Alzheimer’s Plan, Pleas for More Funding
The United States Senate Special Committee on Aging on April 24 held a hearing on "The National Plan to Address Alzheimer's Disease: Are We On Track to 2025?” that emphasized the need for greater funding for Alzheimer’s disease in order to bring it more in line with other chronic diseases.

Witnesses included the daughter and caregiver of Glen Campbell, the legendary musician who was diagnosed with Alzheimer’s disease in 2011. In emotional testimony presented with her father at her side, Ashley Campbell exclaimed that Alzheimer’s disease “robs one of life while they are still living.” She called on Congress to support the President’s fiscal year 2014 budget request for $100 million in increased funding to help advance implementation of the “National Plan to Address Alzheimer’s Disease.”

Other panelists discussed the implementation of the national Alzheimer’s plan and the impact of the disease on the nation’s economy. Don Moulds, Ph.D., Acting Assistant Secretary for Planning and Evaluation and designated federal employee for the national Alzheimer’s plan, told the senators that while the plan has “made great progress, much work remains.” He disclosed that the revised national plan, as required by statute, will be released in mid-May.

Ronald Peterson, M.D., Ph.D., chair of the Advisory Council on Care, Research and Services, which provides guidance on the national plan, said that $2 billion is needed to adequately fund Alzheimer’s disease research. Asked how close we are to a cure, he suggested the field is “just poised of making a huge breakthrough.”

Michael Hurd, Ph.D., director of the RAND Center for the Study of Aging and author of the center’s recent study on the tab of dementia care in the United State, testified that Alzheimer’s disease cost $109 billion in professional healthcare costs, making it the most costly condition faced by Americans. Click here to read witnesses’ written testimony.

Senate Aging Chair Bill Nelson (D-FL) and Ranking Member Susan Collins (R-ME) called Alzheimer’s disease the defining condition of the baby boom generation and stressed that work needs to be done to ensure that does not define the next generation as well. Both senators commented on the huge disparities in funding for Alzheimer’s disease research compared with other disease states and committed to continue pressuring their colleagues and the Administration to provide resources to fight the disease.

These comments closely mirrored the statement released just prior to the hearing from Carol Steinberg, the Alzheimer’s Foundation of America’s acting CEO, who called on Congress to push Alzheimer’s disease funding “to the next level.” To read the complete testimony submitted by AFA, click here.

Policymakers to Address Issues at Hearing, Meeting
On April 24, the U.S. Special Senate Committee on Aging will be holding a hearing on "The National Plan to Address Alzheimer's Disease: Are We On Track to 2025?” at 2:00 p.m. (ET), 106 Dirksen Senate Office Building, Washington, DC. Witnesses are: Ashley Campbell, testifying on behalf of singer Glen Campbell and family; Donald Moulds, Ph.D., Acting Assistant Secretary of Planning and Evaluation, U.S. Department of Health and Human Services; Ronald Petersen, M.D., Ph.D., Cadieux Director of the Mayo Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging; and Michael D. Hurd, Ph.D., Director, RAND Center for the Study of Aging.

On April 29, the Advisory Council on Alzheimer's Research, Care, and Services, advising on the “National Plan to Address Alzheimer’s Disease,” will meet from 9:00 a.m. to 5:00 p.m. (ET) in Washington, DC. The meeting will be Webcast live on http://www.hhs.gov/live.

Help Advance Alzheimer’s-Related Legislation in New Congress
As the 113 th Congress commences its work, members of the House and Senate are beginning to introduce legislation that will directly impact people with Alzheimer’s disease and their family caregivers. Below are brief summaries of some recent legislation.

AFA has expressed its support for these proposals and encourages Alzheimer’s disease stakeholders to help advance these proposals by asking their Congressional representatives to sign on in support of the legislation.

To find your representative, visit www.contactingthecongress.org. To reach members of Congress, call the Capitol Hill switchboard at 202-225-3121. Act today! Together, we can make our voices heard for care and cure.

The HOPE Act: Senators Debbie Stabenow (D-MI) and Susan Collins (R-ME) along with Representatives Chris Smith (R-NJ) and Ed Markey (D-MA) have introduced The Health Outcomes, Planning and Education (HOPE) for Alzheimer's Act. The legislation, S.709 in the Senate and HR 1507 in the House, provides Medicare reimbursement to help increase the detection and diagnosis of Alzheimer's disease and other dementias. Specifically, the HOPE Act would establish a new benefit for Medicare beneficiaries for diagnostic and care planning services for people with Alzheimer’s diseases and related dementias. It would also ensure that an Alzheimer's disease or dementia diagnosis is included in the individual's medical record.

AFA has long supported efforts to increase awareness and benefits of early detection of Alzheimer’s disease and related dementias, as highlighted by its annual National Memory Screening Day. In addition, the legislation would advance several provisions that AFA had suggested for inclusion in the “National Plan to Address Alzheimer’s Disease,” including educating and supporting individuals with Alzheimer’s disease and their family caregivers with care planning options.

The MIND Act: Representative Michael Burgess (R-TX) introduced HR 1619, the Making Investments Now for Dementia (MIND) Act, which would authorize the establishment of United States Alzheimer’s Bonds. The revenues generated by the sale of the bonds, much like security bonds, would be directed to the National Institutes of Health solely for Alzheimer’s disease research. The legislation has bipartisan co-sponsorship, including Representatives Smith and Markey.

In a statement, Eric Sokol, AFA’s vice president of public policy, noted in part: “In these times of fiscal restraint, it’s necessary to be creative in finding funding sources to meet this escalating need. Issuing bonds has always been a traditional way of raising money for a common good. Americans who want to do good for the current and future generations will stand up and put their money in an investment that will pay big dividends for us as a nation.”

Older Americans Act Reauthorization: Senator Bernie Sanders (I-VT) is circulating a letter to his fellow senators requesting their signatures in support of a request to Senate Appropriations Labor/HHS/Education Subcommittee leaders to increase funding support for programs under the Older Americans Act (OAA). These programs include nutrition, supportive services and caregiver supports. AFA is requesting $2.5 million for the Lifespan Respite Care Program and $154 million for the National Family Caregiver Support Program for Fiscal Year 2014.

AFA calls on all Alzheimer’s stakeholders to contact their senators and urge them to sign on to Sanders’ “Dear Colleague” in support of OAA reauthorization. Sanders’ office will be collecting signatures until close of business on April 24.

Missing Alzheimer’s Disease Patient Alert Program: Representative Maxine Waters (D-CA) is requesting a $2 million appropriation in the Fiscal Year 2014 Commerce-Justice-Science (CJS) appropriations bill for the Missing Alzheimer's Disease Patient Alert Program. The program helps local communities and law enforcement officials locate persons with Alzheimer’s disease who wander away and become lost.

Obama Administration Boosts Funding for Alzheimer’s Disease Research and Care in Proposed FY2014 Budget
The Obama Administration, stating it was “fulfilling the Administration’s commitment to enhancing Alzheimer’s research,” on April 10 released their FY2014 budget, which contains an additional $100 million targeted to expanding research, education and support services. The commitment stems from the Administration’s support of the historic “National Plan to Address Alzheimer’s Disease,” which seeks to prevent and effectively treat Alzheimer’s disease by 2025.

Overall, the U.S. Department of Health and Human Services (HHS) will spend $562 million on Alzheimer’s disease research under the President’s 2014 budget plan. Included in this spending is an additional $80 million in the National Institutes on Aging’s budget to speed Alzheimer’s disease drug development and test new therapies; and $20 million for the Alzheimer’s Disease Initiative, with $15 million to the Administration on Aging to strengthen state and local dementia intervention capabilities and for outreach, and $5 million to the Health Research and Services Administration wto expand efforts to provide training to healthcare providers on Alzheimer’s disease and related dementias.

The budget does, however, contain cuts to some important programs that support people with Alzheimer’s disease and their family caregivers. The Missing Alzheimer’s Disease Patient Alert Program, for example, a small but effective program that helps local communities and law enforcement officials locate persons with Alzheimer’s disease who wander away and become lost. The program was “zeroed” out, thus receiving no funding.

In addition, the budget spells out plans to slash $400 billion in Medicare and HHS spending over 10 years through cuts to provider payments and enhanced fraud and abuse efforts . Some seniors could also see a rise in out of pocket costs: the President’s budget would require wealthy seniors to pay a higher share of certain Medicare benefits, and, beginning in 2017 beneficiaries face a copay for certain services by home health care and establish an added premium for supplemental insurance policies known as Medigap plans.

In a statement, the Alzheimer’s Foundation of America (AFA) applauded the Administration for budget increases in Alzheimer’s disease research and caregiver services, noting that they reinforce the Obama Administration’s recognition that the status quo is inadequate to meet the growing needs anticipated by the “silver tsunami” as our population ages. AFA said it understands the current fiscal climate, but hopes that these modest increases are just the beginning and that research investments in Alzheimer’s disease in future budgets will be more in line with monies for other chronic disease states.

AFA will look forward to working with the Administration, Alzheimer’s disease stakeholders and champions in Congress to realize these increases and ensure that are included in a final budget package for FY 2014.

February 2013

AFA Sets its Priorities for New Congress
As the 113th Congress convenes to begin its work, issues surrounding Alzheimer’s disease and family caregiving stand poised to influence the health policy agenda. The Alzheimer’s Foundation of America’s (AFA) message about the urgency of Alzheimer’s disease is already resonating at the highest levels. During his State of the Union address on February 12, President Obama specifically referenced Alzheimer’s disease in calling for the need for "investments in science and innovation."

In addition, several members of Congress known as long-time champions of Alzheimer’s disease research and caregiving issues have attained positions in the new Congress, which could further propel Alzheimer’s disease into a major priority item despite federal budget cuts. Among them, Senator Barbara Mikulski (D-MD) now chairs the Senate Appropriations Committees that fund government programs at the National Institutes of Health (NIH), and Senator Susan Collins (R-ME) now serves as the ranking member on the Senate Aging Committee.

Hoping to significantly advance the cause, especially in light of the goals presented in the federal government’s historic “National Plan to Address Alzheimer’s Disease,” AFA has set its policy priorities for this session. They include:

Seeking the additional $80 million in Alzheimer’s disease research and $26 million for Alzheimer’s disease caregiver services that were part of the President’s fiscal year 2013 budget.
Continuing implementation and monitoring of provisions in the National Plan to Address Alzheimer’s Disease.
Supporting reauthorization of the Older Americans’ Act (OAA), which provides grants to states for community planning and social services, research and development projects, and training for professionals in the field of aging; and funding for more evidenced-based care and home- and community-based services programs.
Calling for reprioritization of research funding for Alzheimer’s disease within the National Institutes of Health (NIH). For fiscal year 2013, NIH will spend only $449 million for Alzheimer’s disease, while $8 billion will be allocated for cancer research; $3 billion for HIV/AIDS; $2 billion for cardiovascular disease; $1.3 billion for heart disease; and more than $1 billion for diabetes. This chronic underinvestment and flat federal funding for Alzheimer’s disease research leaves promising research unfunded and slows scientific progress.
Supporting the introduction of HOPE, Breakthrough and SPRINT bills, as well as any other legislation that benefits Alzheimer’s disease research, people with Alzheimer’s disease and their family caregivers. The HOPE for Alzheimer’s: Health Outcomes, Planning, and Education Act will provide for comprehensive coverage of diagnosis and services related to Alzheimer's disease and other dementias for Medicare beneficiaries; it would improve care and outcomes for Americans living with Alzheimer's disease by increasing detection, diagnosis, care and planning. The Alzheimer’s Breakthrough Act which wouldrequire a Federal commitment to Alzheimer's disease research to advance breakthrough treatments for people living with Alzheimer's disease. The Spending Reductions Through Innovations in Therapies (SPRINT) Agenda Act would speed innovation in research and drug development for the most costly chronic diseases that are the leading causes of death, with resulting cost savings to federal and state governments and family caregivers.
Urging funding of the Missing Alzheimer’s Disease Patient Alert Program that provides federal grants to aid law enforcement in finding people with Alzheimer’s disease who wander.
Reforming the federal tax code by eliminating the live-in requirement needed to qualify for the Dependent Care Tax Credit for caregivers of individuals with Alzheimer’s disease and increasing the amount of the Elder Care or Disability Tax Credit for people with Alzheimer’s disease who file individually or jointly.

January 2013

NAPA Advisory Panel Recommends New Provisions for Updated Alzheimer’s Plan

The Advisory Council on Alzheimer's Research, Care and Services met on January 14 to discuss the progress on research, clinical services and long-term care services included in the historic "National Plan to Address Alzheimer's Disease," and to consider recommendations to the revised plan set to be released in April.

Non-federal members unanimously passed numerous recommendations for the U.S. Department of Health and Human Services (HHS) to consider including in the updated plan. Recommendations that mirror those made by AFA in its latest report on the national plan, “Time to Build,” include:

Research Subcommittee:

HHS should develop, execute and regularly update a strategic research plan and priorities to accelerate breakthroughs in Alzheimer’s disease.
HHS, in partnership with experts from the research community and industry, should take steps to accelerate public access to new therapeutic interventions by compressing the current average timeline from targeting treatments to safety and regulatory review.
The Administration should enhance meaningful coordination with global partners and move forward to establish a Global Alzheimer’s Action Plan.
The Administration should designate offices and officials within the White House and HHS with responsibility and accountability for effective implementation of, and timely, transparent reporting on, all aspects of the national plan.

Clinical Care Subcommittee:

The government should launch a nationwide public awareness campaign specifically to promote early detection and diagnosis of Alzheimer’s disease.
HHS should develop a unified curriculum for primary care practitioners to gain knowledge and skills related to Alzheimer’s disease and care.
HHS should evaluate models of payment and care delivery reform on the quality and cost for the participants with Alzheimer’s disease.
The government should expand funding and incentives to encourage individuals to pursue geriatric careers.

Long-Term Care Support Subcommittee:

State, local and private sector organizations should ensure that paraprofessional caregivers across care settings receive adequate training and compensation
Congress and the Centers for Medicare and Medicaid Services (CMS) should redesign Medicare coverage and providers’ reimbursement to encourage appropriate diagnosis of Alzheimer’s disease and to provide planning to diagnosed individuals and their caregivers.
HHS should require that physicians’ diagnosis process include engaging individuals and family in advance care planning (health, legal, estate and financial).
HHS should provide grants through the Centers for Medicare and Medicaid Innovation (CMMI) for medical home pilot projects specifically targeted at improving medical and chronic condition management for individuals with Alzheimer’s disease, and coordination with family and community care providers.
HHS should convene a blue-ribbon panel to recommend a model(s) of palliative care for people with advanced dementia, including eligibility criteria and financing mechanisms, and provide CMMI grants to implement and evaluate the models.
The national Alzheimer’s plan should recommend use of federal funds ($10.5 million) currently proposed for the Administration on Aging (AoA).
Congress must adequately fund AoA caregiver programs in order to meet existing and growing needs.

Absent from these recommendations were AFA’s call, in its “Time to Build” report, for provisions such as tax credits for caregivers, adoption of hospital and emergency room protocols for individuals with dementia, new transitional housing as an alternative to institutional care, and extending Medicare coverage and AoA programs to all people with Alzheimer’s disease, regardless of age

Also at the meeting, federal officials gave updates on the implementation of the national plan. Among the research updates, the National Institutes of Health (NIH) announced publication of the “2011-2012 Alzheimer’s Disease Progress Report,” and that it will be convening a scientific workshop on dementias on May 1 and 2.

As part of the clinical care progress report, CMS unveiled a new Patient and Family Engagement Campaign (PFEC), aimed at improving person-centered care and family engagement, and a Community Care Transitions Program (CCTP) to improve the effectiveness, efficiency, economy, and quality of services delivered to Medicare beneficiaries.

In presenting an update on long-term services and supports, AoA noted the development of a new Healthy Brain Initiative Roadmap for public health; Webinar series on legal issues for lawyers who have clients with dementia; a new workforce competency model that addresses cognition; and new quality measures as part of the National Partnership to Improve Dementia Care. AoA also announced the publication of the second edition of “Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners.”

The next advisory council meeting is set for April 29 in Washington, DC.

AFA Releases ‘Time to Build’ Report With Recommendations to Update National Alzheimer’s Plan

Noting that “more needs to be done” to tackle the escalating incidence of Alzheimer’s disease, AFA in early January released a report that includes more than three dozen recommendations to build upon the current goals of the federal government’s historic national Alzheimer’s plan and take the initiative to the next level.

AFA’s new report, entitled “Time to Build,” notes that the inaugural plan “provides solid stepping stones toward substantial change.”

However, said Eric J. Hall, AFA’s president and CEO, and the report’s author, “Our nation has the opportunity to dig even deeper to fill remaining gaps… Now is the time to build. And given the enormity of this disease state, the federal government must lead the charge.”

Chief among AFA’s recommendations related to the enormous cost borne by families, AFA urges the expansion of publicly-funded “participant-directed” programs that would allow participants to hire family members as paid caregivers; federal tax credits for primary family caregivers; income tax deductions for out-of-pocket costs for long-term care services; and qualifying all people with Alzheimer’s disease, regardless of age, for Medicare benefits and Administration on Aging programs.

And in an effort to address the housing needs for this vulnerable population, AFA is encouraging the U.S. Department of Housing and Urban Development and other stakeholders to develop new, cost-effective transitional housing as a viable alternative to institutionalization.

To further promote timely and accurate diagnosis, AFA calls for initiating an awareness campaign for physicians—similar to the new campaign for the public; promoting the cognitive detection aspect of the Medicare Annual Wellness Visit; and replacing older memory assessment tools currently suggested by the Centers for Medicaid and Medicare Services with newer, more efficient models.

Click here to read the entire “Time to Build” report.

As always, AFA will continue to solicit recommendations from Alzheimer’s disease stakeholders to further refine the plan. Those with further suggestions can contact Eric Sokol, AFA’s vice president of public policy.

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