This was originally published in Morning Consult on June 24, 2016.
In a counterpoint to endless talk of Washington partisanship and gridlock, often opposing forces in Congress have joined together in a bipartisan battle against Alzheimer’s disease – an epidemic that threatens to bankrupt Medicare and claim an estimated 700,000 lives this year alone.
Recently, the Senate Appropriations Committee included the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 857) in its federal funding bill, determined to attack Alzheimer’s disease on two fronts: research and care.
The bill included an additional $400 million a year for Alzheimer’s research funding at the National Institutes of Health (NIH), along with the inclusion of the HOPE for Alzheimer’s Act to improve access to care and support services for the estimated 5.4 million Americans living with the disease.
Alzheimer’s disease is a national crisis and it requires national solutions. Someone in the U.S. develops this disease every 66 seconds. At a cost of approximately $236 billion a year, almost half of that borne by Medicare, it is also America’s most expensive disease. And the numbers are only expected to grow – the number of people living with the disease will triple and costs will quadruple as baby boomers age. Yet, Alzheimer’s disease remains the only leading cause of death in the country without a way to prevent, cure or even slow its progression.
But there’s still time for Congress to help stop Alzheimer’s disease in its tracks.
As action on both Alzheimer’s research funding and access to care and support services now moves to the full Senate and through the House appropriations process, it is important for policymakers to understand the strategy that has guided the bipartisan effort against Alzheimer’s disease.
In December 2010, Congress unanimously passed the National Alzheimer’s Project Act, calling for a strategic federal plan to combat the Alzheimer’s crisis. The plan set a clear, overarching goal: “prevent and effectively treat Alzheimer’s disease by 2025.” The plan also called for supporting people with Alzheimer’s disease and their families.
On research, experts have determined that in order to reach this goal annual funding at NIH for Alzheimer’s must be at least $2 billion. The latest $400 million increase approved by the Senate Appropriations Committee is a significant step toward achieving this recommended level of funding.
On care and support, advocates have urged legislators to consider how best to help those who have the disease and their more than 15 million caregivers. The symptoms and progression of Alzheimer’s disease can be terrifying, making early diagnosis and subsequent care planning critical. Unfortunately, fewer than 50 percent of people with Alzheimer’s are aware of their diagnosis.
In addition, only about half of those with Alzheimer’s disease have been diagnosed. One of the reasons physicians do not diagnose Alzheimer’s – or do not disclose a diagnosis once it is made – is because of the lack of resources to provide information and support to patients and caregivers.
Although Medicare will pay for a diagnosis, it does not cover care planning. The proposed Senate funding bill would remedy that with its inclusion of the HOPE for Alzheimer’s Act. If signed into law, this would require Medicare to pay for a care planning session that would include an explanation of Alzheimer’s or related dementias, as well as the expected progression of the disease; the creation of a patient-centered care plan; information about treatment options; and a discussion of resources and services available in the community.
The dual focus of research investment and support for care means that when faced with Alzheimer’s disease, millions will not be left to fight alone. This proposed funding bill promises that our government, our scientists, and our communities will be there fighting alongside them, equipped with real solutions and the support of a unified Congress.
The fight against Alzheimer’s offers this Congress an opportunity to act in the nation’s long-term interest, while offering immediate hope to the millions of individuals and their families facing the devastation of Alzheimer’s disease. Our community never gives up, and we know that Congress has heard us.
Robert Egge is the Executive Director of the Alzheimer’s Impact Movement.