(Alzheimer’s Association) Advocates Now Call on Congress and White House to Ensure Enactment of Critical Alzheimer’s Legislation in the Bill.
As the largest Alzheimer’s advocacy organization in the world, the Alzheimer’s Association commends Congress for addressing Alzheimer’s disease in the fiscal year 2015 funding bill released today. By incorporating the Alzheimer’s Accountability Act (H.R. 4351/S. 2192), which was shepherded by the Alzheimer’s Association, Congress has made a long-term commitment to elevating research funding to the necessary levels.
2d Session To amend the National Alzheimer’s Project Act to require the Director of the National Institutes of Health to prepare and submit, directly to the President for review and transmittal to Congress, an annual budget estimate (including an estimate of the number and type of personnel needs for the Institutes) for the initiatives of the National Institutes of Health pursuant to such Act. Mr. Guthrie (Sponsor, Rep. Guthrie, Brett [R-KY-2]) (for himself, Mr. Tonko, Mr. Smith of New Jersey, and Ms. Waters) introduced the following bill; which was referred to the Committee on Energy and Commerce To amend the National Alzheimer’s Project Act to require the Director of the National Institutes of Health to prepare and submit, directly to the President for review and transmittal to Congress, an annual budget estimate (including an estimate of the number and type of personnel needs for the Institutes) for the initiatives of the National Institutes of Health pursuant to such Act. Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, This Act may be cited as the “Alzheimer’s Accountability Act of 2014”. The Congress finds as follows: (1) Alzheimer’s disease is the most expensive disease in the United States today. Its costs are set to increase like the costs of no other disease and will be carried in substantial measure through the Medicare and Medicaid programs. (2) Through the unanimous, bipartisan passage of the National Alzheimer’s Project Act (Public Law 111–375), the 111th Congress recognized the national imperative to act and instructed the Nation’s scientists to develop a plan to change the trajectory of this disease. (3) Scientists at the National Institutes of Health have prepared and presented to Congress a national plan to prevent and effectively treat Alzheimer’s disease by 2025, including the underlying specification of milestones and timelines to achieve this goal. (4) Capital budgeting is a universally accepted best practice for the successful management of such a multiyear project, but such projections have not been prepared and provided to Congress to achieve the 2025 goal, preventing Congress from exercising truly effective oversight over a venture of profound importance to the Nation. Section 2 of the National Alzheimer’s Project Act (Public Law 111–375) (42 U.S.C. 11225) is amended— (1) by redesignating subsection (h) as subsection (i); and (2) by inserting after subsection (g) the following: “(h) Professional Judgment Budget.—For each fiscal year through fiscal year 2025, the Director of the National Institutes of Health shall prepare and submit, directly to the President for review and transmittal to Congress, after reasonable opportunity for comment (but without change) by the Secretary of Health and Human Services and the Advisory Council, an annual budget estimate (including an estimate of the number and type of personnel needs for the Institutes) for the initiatives of the National Institutes of Health pursuant to this Act.”. |
This bill will help ensure that future Congressional Alzheimer’s funding decisions will be guided by the professional judgment of National Institutes of Health (NIH) scientists as they race toward the National Plan to Address Alzheimer’s Disease’s goal to prevent and effectively treat Alzheimer’s by 2025.
“After thousands of congressional meetings with Alzheimer’s Association grassroots advocates and staff in the past 18 months, Congress has committed to a new strategic approach to addressing Alzheimer’s funding moving forward,” said Harry Johns, president and CEO of the Alzheimer’s Association.
“We must hear from and enable the leading minds in science if we hope to adequately fund Alzheimer’s research and accomplish the primary goal of the National Alzheimer’s Plan.”
Introduced in April, the Alzheimer’s Accountability Act calls for the NIH to submit a Professional Judgment Budget for Alzheimer’s disease research each year, as well as a report that outlines research conducted on Alzheimer’s disease relative to milestones established under the National Alzheimer’s Plan.
This annually prepared Professional Judgment Budget will be formulated by the experts at the NIH to reflect the resources needed to accomplish the goals of the National Alzheimer’s Plan in each fiscal year leading up to 2025. It will reflect the state of Alzheimer’s research and call out the most promising opportunities according to leading scientists.
Additionally, the funding bill includes a $25 million increase for Alzheimer’s research, which comes on the heels of an unprecedented $122 million increase for Alzheimer’s research, education, outreach and caregiver support in fiscal year 2014. Together, these increases would bring annual federal funding for Alzheimer’s research to $591 million. However, scientists have stated accomplishing the goal of the National Alzheimer’s Plan – and one day having our first Alzheimer’s survivor – will require a commitment of at least $2 billion a year.
There are currently more than 5 million Americans living with Alzheimer’s disease at a cost to the nation of $214 billion a year, according to the Alzheimer’s Association 2014 Alzheimer’s Disease Facts and Figures report. Because advancing age is the greatest risk factor for Alzheimer’s and Americans are living longer than ever before, those numbers are projected to soar to as many as 16 million by 2050, costing the nation $20 trillion over the next 40 years.
A new study from a team of economists at the University of Southern California (USC)1 reveals that Alzheimer’s costs to the nation will grow fivefold in years to come. These findings come on the heels of last year’s New England Journal of Medicine2 study that confirmed Alzheimer’s is already the most expensive condition in America. Yet, for every $26,500 the government spends on Alzheimer’s care, it only invests $100 in research for Alzheimer’s – a disease that currently has no way to prevent, stop or even slow its fatal progression.
“The accumulated evidence that we, as a nation, cannot afford Alzheimer’s disease is now overwhelming. With Medicaid and Medicare bearing the brunt of the exorbitant expense to care for people with Alzheimer’s, our only option to avoid these crippling costs is to invest in research now at levels reflecting the magnitude of the epidemic,” said Johns. “While this additional funding is very much needed to capitalize on immediate scientific opportunities, passage of the Alzheimer’s Accountability Act sets up the potential for the sustained funding increases necessary to change the course of this epidemic.”
The Alzheimer’s Association commends Congress for its bipartisan dedication to Alzheimer’s disease. The Association now encourages all parties – the House of Representatives, the Senate and the Obama Administration – to ensure enactment of this critical Alzheimer’s legislation and the research funding within the bill.
For more information on Alzheimer’s disease and available resources, visit the Alzheimer’s Association at alz.org.
Alzheimer’s Association
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia
through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit alz.org.
