A decade ago, working with bipartisan Congressional champions, the Alzheimer’s Association developed the National Alzheimer's Project Act (NAPA) (P.L. 111-375), a landmark law that has led the way for additional policy victories, including the first National Plan to Address Alzheimer's Disease, with the goal of preventing and effectively treating Alzheimer's by 2025.
NAPA was signed into law in January 2011. Here, Alzheimer’s Association CEO Harry Johns reflects on the 10th anniversary of NAPA.
The unanimous approval of the National Alzheimer’s Project Act (NAPA) by Congress was exciting. Thanks to our advocates and staff, and certainly our leading champions in Congress, Sens. Evan Bayh (D-IN) and Susan Collins (R-ME), and Reps. Chris Smith (R-NJ) and Ed Markey (D-MA), it created so many new opportunities after too little federal action for too long. Ten years later, while we have much more yet to accomplish, we can celebrate significant progress built on NAPA, progress that points to even more opportunities and the ultimate successes we all seek. We have secured vital, unprecedented federal research funding increases, initiated development of crucial public health infrastructure and improved access to quality care, including support under both Medicare and the Older Americans Act.
In 2005, when I joined the Association, Alzheimer’s wasn’t a significant part of the national conversation. So, we set out to change that, including the first campaign to raise concern about Alzheimer’s to be commensurate with its impact. We also did not have all the contemporary tools to advance public policy. While working on cancer, I had the opportunity to lead the creation of the first 501 (c)(4) in voluntary health. In 2009, the Association governing board provided important leadership, creating the Alzheimer’s Impact Movement (AIM), a 501 (c) (4), as our advocacy affiliate. Evan Thompson and Bob Thomas deserve specific recognition for their leadership on the AIM board over time. Robert Egge, our Chief Public Policy Officer, joined us later in 2009, and has since built the team that has led so much great work, along with so many others across the Association and AIM.
Even after successfully driving Alzheimer’s into the national conversation through our media strategy, including annual publication of Alzheimer’s Disease Facts and Figures, as we began the push for NAPA, we faced significant pushback. Many said it simply was not possible for us to make it happen in the same year as the separate Affordable Care Act. Others derided NAPA as incomplete because we had — intentionally — not included funding. They failed to see that we and our congressional champions were building a crucial foundation for other actions.
Too often in Washington, groups try to get everything at once, and even if the need is absolute, get nothing at all. We knew we would need to be relentless in pursuing our constituents’ needs, with that relentless pursuit focused on converting the potential of NAPA into reality — by building more successes on that foundation. We have so much more to accomplish, but thanks to so many, the Association has driven significant conversions of NAPA potential into reality, gains that have already helped and gains that will lead to fulfillment of the many remaining needs.
Prior to NAPA, there was no comprehensive plan to address Alzheimer’s, the only leading cause of death with no effective treatment or prevention — and the costliest of all diseases in America. In fact, in 2010, for every dollar the federal government spent on the cost of Alzheimer’s care, it invested less than a penny on research for the disease.
We were sharply focused on this extreme underinvestment to change the course. The outcomes of big investments, commensurate with disease impact, in cancer and HIV/AIDS had clearly demonstrated the great potential for such investments in dementia research.
To support the NAPA conversation, we did the Alzheimer’s Breakthrough Ride, gaining attention for the issue as researchers cycled across the country to Washington, D.C., where we presented hundreds of thousands of petition signatures to Congress. Dr. Bruce Lamb had conceived the ride and we thought the timing was right to support NAPA. The administration held a White House Summit on Alzheimer’s, the first ever, the day the Breakthrough Riders arrived at the Capitol.
With the strength of our public policy staff, hundreds of thousands of advocates and our great congressional leadership, together we got NAPA passed, despite the naysayers and the inertia.
With the signing in early 2011, NAPA required a much-needed comprehensive plan for Alzheimer’s and other dementia in the United States. Our federal colleagues at the National Institutes of Health (NIH) and the National Institute on Aging (NIA), led by Dr. Francis Collins and Dr. Richard Hodes, and leaders across other agencies, committed to a strong plan, with a leading objective to achieve prevention and effective treatment by 2025. We certainly advocated for such bold pursuit, but our federal colleagues could have been more cautious. They weren’t. It was ambitious then and it is ambitious today. We haven’t achieved it yet, but we can.
We Are Fundamentally Changing Alzheimer’s Research
Today, we have more momentum in Alzheimer’s and other dementia research than ever before. The Association plays a significant role, with the leading scientific journal in the space, as the world’s leading convener of dementia researchers and as the world’s largest non-profit funder of such research, recognized by Clarivate as the highest impact among all such organizations.
As seriously as the Association takes our responsibility to directly fund and otherwise facilitate Alzheimer’s and other dementia research, we worked so hard to pass NAPA, in no small part, to get federal policy makers to fund such research at appropriate levels.
Built on the NAPA foundation,
the Alzheimer’s Accountability Act (AAA), which the Association and AIM worked with Congressional champions to develop and incorporate in legislation in 2015, requires NIH scientists to submit a professional judgment budget to the Congress each year, bypassing constraints to achieve the milestones in the national plan.
Over the years since passing NAPA and AAA, the Association and AIM have continued to work closely with key members of Congress, who have demonstrated real leadership for the country on Alzheimer’s and other dementia research. We have continued to drive the national discussion about Alzheimer’s and have supported these leaders with our strong advocacy. And, working together, based on the professional judgment budgets done by the NIH scientists under AAA, bipartisan congressional leaders have advanced research funding to new levels.
Sens. Roy Blunt (R-MO) and Patty Murray (D-WA) and Reps. Rosa DeLauro (D-CT) and Tom Cole (R-OK) deserve deep thanks for their great leadership in setting Alzheimer’s and other dementia research on the path to success. Through our work together, U.S. investment in Alzheimer's research is now $3.1 billion annually, compared to $448 million in 2010, when NAPA passed. Even with these gains, the NIH scientists’ annual professional judgment budget, required by AAA, remains fundamental to ultimate success.
We Are Fundamentally Changing the Future of Care and Support
Until we ultimately succeed in changing the course of Alzheimer’s and all other dementia through research, we must, of course, continue to improve quality of life with improved access to quality care and support for all affected — those with dementia and their caregivers.
Here again, the Association plays a big role directly. We do it in person and through virtual programs across the country and beyond. For millions in need, we do it 24 hours a day, 365 days a year, through our website, alz.org, and through our free Helpline at 800.272.3900. And, we do it through development of guidelines and partnerships with healthcare systems to provide care driven by those guidelines nationwide.
NAPA has also been the foundation for legislative advances the Association has achieved with Congressional champions on care, support, risk reduction and infrastructure comparable to what already works in communities nationwide for cancer, heart disease and diabetes.
Thanks again to our work with Congressional champions, in 2016 we were successful in getting the key element of
the HOPE for Alzheimer’s Act, reimbursement for professional care planning, included in Medicare. We know well that such support is so important for potentially so many and no such benefit had ever before existed in Medicare. This year, after seeing less than the number covered taking advantage of the benefit, passage of the Improving HOPE Act will drive awareness of the HOPE benefit to those in need, to create greater access. In both cases, Sen. Debbie Stabenow (D-MI) deserves particular credit for her leadership.
We designed the BOLD Infrastructure for Alzheimer's Act (BOLD), passed in 2018, to create the public health support systems to increase early detection and diagnosis, risk reduction and caregiving support. The Congress just increased the funding to ramp up to the unmet need. In addition, in this most recent Congressional session, our champions passed the key elements of the Younger Onset Alzheimer’s Disease Act as part of the Older Americans Act and the Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act.
None of these provisions existed for Alzheimers and other causes of dementia before NAPA.
As we commemorate the anniversary of NAPA, we know all too well that we have much, much more to do. We will remain relentless in our day-to-day work directly through the Alzheimer’s Association. And, we’ll be equally relentless in our advocacy, building on the advances we’ve already made.
NAPA will continue to make a difference going forward, thanks to all of our advocates, donors, volunteers and staff, and certainly the great leadership of our many congressional champions. Deep thanks to everyone who has been, and continues to be, so active in making so many positive differences for so many others.
About: Harry Johns is the president and CEO of the Alzheimer's Association and the Alzheimer’s Impact Movement.
Related articles:
Alzheimer’s Advocacy
Volunteer as an Alzheimer’s Advocate
Alzheimer’s Association Public Policy Victories