Alzheimer's Foundation of America


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About Alzheimer's Foundation of America

Advocacy Updates 2014

The Alzheimer's Foundation of America (AFA) provides periodic advocacy updates designed to give a brief overview of AFA's advocacy efforts and legislative activity

September 2014

AFA Urges Constituents to Speak Up About Alzheimer’s Disease During Election Season

Members of Congress have left Washington to return to their districts to campaign before the November mid-term elections. This gives constituents tremendous leverage: it’s a perfect opportunity to get commitments from sitting members of Congress and their election challengers. Politicians, moreover, will be more visible on the campaign trail, providing opportunities for constituent contact at district offices, parades, festivals, coffee klatches, town hall meetings, and campaign debates. AFA urges all Alzheimer’s disease stakeholders to take advantage of these opportunities and engage our federal representatives.

To help aid in your advocacy, below are talking points to support issues of importance for people living with dementia and their family caregivers that are currently before Congress:

Support increases at the National Institutes of Health (NIH) for Alzheimer’s disease research:

  • Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys a person’s memory and thinking skills, and ability to independently perform activities of daily living. As many as 5.1 million Americans may have Alzheimer’s disease, and the incidence is expected to triple to 13.8 million by 2050.
  • According to the Centers for Disease Control (CDC), Alzheimer’s disease is the sixth leading cause of death in America. It is also the only growth category in the top ten causes of death and the only condition with no cure or treatment to reverse or slow its progression.
  • Despite the need, spending on Alzheimer’s disease research lags far behind research resources spent on other major diseases. For fiscal year 2014, NIH will spend only $540 million for Alzheimer’s disease, while $6 billion will go to cancer research, $3 billion to HIV/AIDS, $2 billion to cardiovascular disease, $1.3 billion for heart disease, and more than $1 billion to diabetes. This chronic underinvestment and flat federal funding for Alzheimer’s disease research leaves promising research unfunded and slows scientific progress to the prevention or effective treatment of this brain disorder.
  • Alzheimer’s Disease” is to find a cure or meaningful treatment by 2025. Without adequate resources, progress cannot be made on this ambitious, but achievable goal.
  • The Senate Appropriations Subcommittee on Labor, Health and Human Services (HHS) and Education has approved a budget calling for a $100 million increase for Alzheimer’s disease research in fiscal year 2015.

We urge members of Congress to support the Senate Appropriations Subcommittee on Labor, HHS and Education’s $100 million funding increase for Alzheimer’s disease.

Support reauthorization of the Older Americans’ Act:

  • The Older Americans’ Act (OAA) provides grants to states for community planning and social services, research and development projects, and personnel training in the field of aging.
  • OAA programs like Alzheimer’s disease education, adult day services, caregiver training, senior nutritional services and legal assistance help reduce some of the physical, financial and emotional toll of caregiving for individuals with the disease and their families.
  • Absent OAA supports, people living with dementia and their family caregivers would face increased hardships, greater challenges, and higher costs.

AFA supports reauthorization of OAA programs at sufficient funding levels to support the growing number of individuals living with dementia and their family caregivers.

March 2014

AFA Presses for Legislative Advances in Second Session of 113th Congress

AFA looks forward to working with Congress, the Administration and Alzheimer's disease stakeholders to ensure that a meaningful increase in Alzheimer's disease funding becomes a reality in FY '15 and moves the nation closer to attaining the ambitious, yet essential, care-and research-related goals of the "National Plan to Address Alzheimer's Disease."

AFA's 2014 Legislative Recommendations:

  • "Double Down" on Alzheimer's disease research funding at the National Institutes of Health (NIH).

AFA hopes the modest increase in Alzheimer's disease spending in FY '14 will pave the way for greater funding in Alzheimer's disease research and care in the future that is more in line with investments in other chronic disease states. AFA is asking Congress for $500 million in additional resources, for a total of just over $1 billion for Alzheimer's disease research and enhanced investments for caregiver supports in the FY'15 budget.

Efforts are already underway in the Senate to ramp up funding for Alzheimer's disease research and caregiver services. Senators Collins (R-Maine) and Klobuchar (D-Minn.) have introduced S. Res. 303, a resolution calling on the Senate to make fighting Alzheimer's disease an urgent national priority and to increase funding to $2 billion by FY '19.

  • Support expansion and funding Older Americans' Act (OAA) programs. Since its inception in 1965, the OAA has been providing necessary care supports and promoting best practice tools to family caregivers. OAA programs like Alzheimer's disease education, adult day services, caregiver training, senior nutritional services (i.e., "Meals on Wheels") and legal assistance help the growing number of people with Alzheimer's disease and their families alleviate some of the physical, financial and emotional toll of caregiving, and can delay institutionalization of a person with dementa by up to 18 months. AFA is urging Congress to pass OAA Reauthorization legislation that has been introduced in both the Senate and House (S. 3562, H.R. 3850).

  • Pass the Health Outcomes, Planning and Education (HOPE) for Alzheimer's Act. The HOPE Act provides for 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, and ensure that a diagnosis of Alzheimer's disease or dementia is included in the individual's medical record. AFA calls on Congress to pass the HOPE Act (S. 709, and its companion in the House H.R. 1507).

  • Establish an adult day program benefit under Medicare and mandate adult day program as a state Medicaid benefit. Rep. Linda Sanchez (D-Calif.) has introduced legislation in the House (H.R. 3334), that would establish an adult day care option under Medicare. AFA recommends Congress make adult day services a benefit under both the Medicare and state Medicaid programs.

  • Pass the Achieving a Better Life Experience (ABLE) Act. The ABLE Act, S. 313., will help families and individuals defray costs associated with caring for a person with Alzheimer's disease or other dementias. Under the legislation, family caregivers will be able to tap into new ABLE accounts, modeled after the popular 529 college education saving program, that will allow contributions to grow tax free and would be easy and inexpensive to create. AFA urges Congress to pass S. 313 and its companion bill in the House (H.R. 647).

  • Establish tax credits for people with Alzheimer's disease and their family caregivers. Currently, federal and state tax codes offer limited assistance to informal unpaid family caregivers. To qualify for the Elderly Dependent Care Tax Credit, the older care recipient and caregiver recipient must live in the same home for at least half the year. Rep. Steve Israel (D-N.Y.) has introduced legislation, the Elder Care Dependent Tax Credit, which would do away with the same home restriction, allowing people caring for elderly relatives to receive up to a $1,200 tax credit for qualified elder care expenses despite not living in the same home with their loved one. AFA urges Congress to revise the tax code to provide greater incentives for family members who help shoulder the enormous and typically lengthy responsibilities of providing care for a loved one with Alzheimer's disease.

We urge all Alzheimer's stakeholders to contact their Congressional delegations in support of AFA's legislative priorities. You can reach your members of Congress by calling the Capitol Hill switchboard at 202-225-3121. Don't know who to contact? Visit www.contactingthecongress.org.