Nothing better reflects a mashup of neglected issues than the designation of November as national recognition month for Alzheimer’s Awareness, Family Caregivers, Home Care and Long-Term Care. No significant headway has been made on any of these fronts — from sorely underfunded research on this fatal neurodegenerative disease, to caregivers as the “second victim,” to the bankrupting financial health consequences for families and society.
Unfortunately no disease exemplifies the misalignment of resources against current and projected needs like Alzheimer’s and dementia. Today, it’s estimated that upward of 5 million Americans are living with — or more accurately, dying from — Alzheimer’s and dementia. A half-million deaths each year makes Alzheimer’s the third and only leading cause of disease to lack a means of prevention or a disease-modifying treatment or therapy.
From 2002 to 2012, Alzheimer’s candidate therapies failed 99.6 percent of the time, including multiple late-stage failures. As a result of these challenges, the number of potential Alzheimer’s therapies in development today is less than 100 and pales in comparison to other prevalent diseases. A 2013 study by the RAND Corporation found the direct care costs of Alzheimer’s exceeded similar costs for cancer and heart disease.
If the current trajectory of Alzheimer’s remains unchanged, most estimates predict the number of victims at 76 million by 2030, at a cost exceeding $600 billion annually.
In some ways, we would be better off if Alzheimer’s disease were a brand new emergency instead of a century old threat to which we had become inured — a stealthy and deadly contagion driving fear through every baby boomer and elected official about the slow and tortured death it brings to its victims as it infects their families with pain, suffering and financial ruin. Caregivers would protest their endless quarantine instead of stoically accepting the isolation and loneliness of being shut-in with their loved one as if there were no other choice. The media would signal daily casualty alerts with every “Prisoner of Alzheimer’s” outbreak as every 68 seconds, another of us falls victim — 10 thousand a day and 4 million a year. Just consider the impetus, irrespective of cost, to develop a whole new generation of vaccines and the bureaucratic and organizational impediments leveled to rescue aging populations at home and globally. Unlike Ebola, Alzheimer’s disease is a guaranteed pandemic. Under this scenario, everyone becomes a stakeholder; everyone is at risk.
Despite the National Alzheimer’s Prevention Act, the White House and Congress appear tone deaf to advocates clamoring for a war on Alzheimer’s. Ironically it should be a matter of self-preservation. A profile of the 113th Congress shows the average age of House members is 57 and the average age in the Senate is 62 — right in the risk zone for mild cognitive impairment and on the way to full blown dementia.
Over the past few years, the administration and Congress has allocated additional funding to Alzheimer’s research, shifting nearly $200 million in National Institutes of Health funding to this purpose from 2012 to 2014. Even with these infusions, the NIH will commit about $560 million to Alzheimer’s disease research this year. This represents about a third of 1 percent of the costs of Alzheimer’s that the federal government is already shouldering today and is paltry compared to the amounts NIH commits to other prevalent and costly disease; $5.4 billion on cancer research, $3 billion on HIV/AIDS research and about $2 billion on research into heart disease and stroke this year.
Clearly the last thing we want to do is start a disease vs. disease battle pitting one worthy cause against another. But just as tight times force households and businesses to be particularly thoughtful in setting priorities, a similar mindset is needed. Hopefully there are Republican champions in the new GOP-controlled House and Senate who will seize the call to prioritize both research spending and dementia as a component of research spending and pass an omnibus appropriations bill.
“Each generation will be judged by whether the greatest, most consequential issues of the human condition have been faced and that decisions to meet these challenges must be taken by statesmen before it is possible to know what the outcome may be,” former Secretary of State Henry Kissinger writes in his book, “New World Order.”
Alzheimer’s disease is one issue that will define our generation and how we will be remembered. Will the new GOP Congress be up for more than brain games and pursue a mindful legacy for its party and us all?
Meryl Comer is president of the Geoffrey Beene Foundation Alzheimer’s Initiative, co-founder of Women Against Alzheimer’s and author of The New York Time’s best-seller “Slow Dancing With A Stranger: Lost and Found in the Age of Alzheimer’s.”