This blog post was prepared for and originally appeared on Independent Journal Review on February 6, 2017.
President Reagan once said, “To sit back hoping that someday, someway, someone will make things right is to go on feeding the crocodile, hoping he will eat you last – but eat you he will.” It’s not a surprising turn of phrase from the Western cowboy and fearless optimist that was President Reagan, and it definitely speaks to his legacy.
After his Alzheimer’s diagnosis, the President and his wife used their public platform to help fight social stigmas, and channeled their energy into advocacy to raise awareness and shift the policy debate on Alzheimer’s disease. On what would be President Reagan’s 106th birthday, we remember how his battle with Alzheimer’s helped educate America about the disease, and the need to act.
President Reagan’s experience with this disease is, unfortunately, not unique. In fact, it’s devastatingly common – and growing fast. Today, one in three seniors dies with Alzheimer’s or another dementia, and every 66 seconds someone new develops the disease. As our population ages, the incidence of Alzheimer’s grows – more than 28 million Baby Boomers are expected to develop the disease, with someone in the U.S. developing Alzheimer’s every 33 seconds by mid-century.
The only leading cause of death in the country that cannot be prevented, cured or even slowed, Alzheimer’s disease is a growing public health crisis. Only half of those with Alzheimer’s disease have been diagnosed and 45 percent of those diagnosed or their caregivers are not aware of the diagnosis.
Alzheimer’s disease may still far too often evade diagnosis or awareness, but its costs are glaring. Alzheimer’s is America’s most expensive disease and last year total payments for healthcare, long-term care and hospice were estimated at $236 billion with $160 billion of that coming from Medicare and Medicaid. That figure does not include the out-of-pocket costs to American families. In 2015, more than 15 million Americans provided an estimated 18.1 billion hours of unpaid care for a family member or friend with Alzheimer’s or other dementias at an estimated cost of $221.3 billion. Family caregivers on average spend more than $5,000 a year of their own money caring for someone with Alzheimer’s.
But these statistics would never hold President Reagan back, and it hasn’t kept others from taking action either. The National Plan to Address Alzheimer’s Disease outlines the steps we must take to effectively treat and prevent Alzheimer’s disease and related dementias by 2025. Addressing this crisis begins with a robust National Institutes of Health (NIH) and that means they need the necessary resources.
With the passage of the Alzheimer’s Accountability Act in 2014, researchers at NIH now directly submit to Congress a budget containing the amount of funding they believe is needed each year to address the crisis. This unique mechanism goes directly from NIH to the President and Capitol Hill. In October 2016, NIH submitted a $414 million increase request for FY18.
Following a historic increase of $350 million for FY16, today Alzheimer’s research funding is at $991 million, but we are still well short of the at least $2 billion that leading experts say is needed to prevent and treat Alzheimer’s disease by 2025. And, importantly, a $400 million increase for FY17 was pending with the 114th Congress and now needs action by the 115th. Congress has made significant strides in meeting the need, and we are hopeful that commitment made for FY17 will be realized by this new Congress. Encouragingly, during the 2016 campaign President Trump said addressing Alzheimer’s would be “a top priority” and when asked about growing NIH research funding for diseases including Alzheimer’s Rep. Price (R-GA) said “NIH is a treasure for our country.”
President Reagan is also well known for saying, “…the nine most terrifying words in the English language are, ‘I’m from the government and I’m here to help.’” But he also understood the importance of NIH and the benefits, financial and personal, of the research it performs. Our government won’t solve Alzheimer’s directly, but we do need the government to play the indispensable role of equipping those who can to do their job – our first-class Alzheimer’s researchers around this country poised to deliver breakthroughs to overcome this disease.
Rather than leave Alzheimer’s as a point in his biography, let’s honor President Reagan’s legacy by facing the crocodile head on. It’s time for Congress to increase Alzheimer’s research funding at NIH.
Robert Egge is the Chief Public Policy Officer of the Alzheimer’s Association and the Executive Director of the Alzheimer's Impact Movement.