FEDERAL PRIORITIES 2016

Alzheimer’s disease is a growing crisis for our families and the economy. The federal government must address the challenges the disease poses and take bold action to confront this epidemic now. 

 

1. Increase the commitment to Alzheimer’s research

Alzheimer’s is the most expensive disease in America, costing an estimated $236 billion in 2016. By mid-century, the number of people with the disease is set to nearly triple. And, the costs are projected to more than quadruple to $1.1 trillion, with two-thirds of these costs paid by Medicare and Medicaid. If we meet the goal of the National Alzheimer’s Plan to have an Alzheimer’s treatment by 2025, Medicare spending would be reduced on those with the disease by nearly 25 percent in 2050 alone – and the federal government would recoup its research investment within three years. While Congress has recently provided additional funding for Alzheimer’s research at the National Institutes of Health (NIH), the commitment continues to fall far short of the need. For every $100 that the NIH spends on Alzheimer’s research, Medicare and Medicaid spend $16,000 caring for those with the disease. Congress must continue its commitment to the fight against Alzheimer’s disease by increasing funding for Alzheimer’s research by at least an additional $400 million in fiscal year 2017.

2. Improve access to care planning

To ensure high quality medical care and better outcomes for individuals with Alzheimer’s, newly-diagnosed individuals must receive care planning, and the diagnosis must be accurately communicated to the individual and noted in his or her medical record. Those who receive care planning have fewer hospitalizations and emergency room visits, better medication management, and better management of multiple chronic conditions. Consistent with the National Alzheimer’s Plan’s call for timely diagnosis and education for newly-diagnosed individuals, the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 857/H.R. 1559) would provide Medicare coverage for comprehensive care planning services – for both the individual and his/her caregiver – following a dementia diagnosis. Providers would be required to document the diagnosis and care planning services in the individual’s medical record. Enactment of the HOPE Act would save the federal government an estimated $692 million over 10 years.

See the group letter of support for the HOPE for Alzheimer's Act
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3.  Educate providers on palliative and hospice care

Nearly half of all people with Alzheimer’s and other dementias are in hospice care at the time of their death. Less than half of surveyed nursing homes have some sort of palliative care program. For people with advanced dementia, such care – which focuses on managing and easing symptoms, reducing pain and stress, and increasing comfort – improves quality of life, controls costs, and enhances patient and family satisfaction. But, as the demand for such care grows with the aging population, more must be done to ensure an adequately trained workforce. The Palliative Care and Hospice Education and Training Act would increase palliative care and hospice training for health care professionals, launch a national campaign to inform patients and families about the benefits of palliative care, and enhance research on improving the delivery of palliative care.

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H.R. 6, The 21st Century Cures Act

Other Legislation We Support:

  • S. 192, the Older Americans Act Reauthorization Act of 2015 
  • S. 1549, the Care Planning Act of 2015 
  • H.R. 3090, the Alzheimer's Caregiver Support Act
  • H.R. 3091, the Missing Alzheimer's Disease Patient Alert Program Reauthorization Act of 2015
  • H.R. 3092, the Alzheimer's Disease Research Semipostal Stamp Act
  • H.R. 3243/S.1362, the PACE Innovation Act of 2015
  • H.R. 3099/S.1719, the RAISE Family Caregivers Act of 2015
  • H. Res. 237/S. Res. 74, a resolution declaring that achieving the primary goal of the National Plan to Address Alzheimer's Disease of the Department of Health and Human Services to prevent and effectively treat Alzheimer's disease by 2025 is an urgent national priority
  • S.2067, The EUREKA Act
  • H.R.4919/S.2614 Kevin and Avonte's Law
Search Congress.gov for more information about the bills above.