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.

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