Today we celebrate the civil rights movement, one of its beloved leaders, and our hard-won gains. Unfortunately, African Americans are at risk of letting those gains slip through their fingers, along with their most basic civil right: to support their families, and themselves. Worse, they don’t even know about this threat. I’m talking about Alzheimer’s, and the dirty little secret that African Americans are twice as likely to get it. Its consequences, as I have come to see first-hand, are simply catastrophic.
My beautiful wife, the food and lifestyle maven B. Smith, is now well into the dreadful progression of stages from which, so far, no cure or effective treatment exists. I have become her round-the-clock caretaker, the hardest job I’ve ever known. And yet I’m luckier than most in my position: We live in a nice house, and we have money saved.
For the 5.3 million Americans coping with it, and the roughly 15 million more serving as full- or part-time caretakers to those loved ones, Alzheimer’s is a curse that costs, on average, $100,000 a year. Make that $1 million over the disease’s average 10-year duration. Most African-American families struggling with Alzheimer’s simply can’t afford that. Having reached the middle class at last—thanks in large part to Dr. King and his movement—many are slipping back into destitution, the gains of a movement snuffed out, like so many candles in the dark, one by one by one.
The Obama administration has, at last, taken steps to address the gross inequity of funding for Alzheimer’s research versus other top killers. The budget for Alzheimer’s research will be boosted 60 percent in this year’s budget to $936 million. That’s still chump change compared to cancer ($5.1 billion) and HIV/AIDs ($25.3 billion), especially with 13.8 million Americans projected to get Alzheimer’s by 2050, at a cost to us all of $1.1 trillion. Yet, research is up, and promising drugs are out there.
The problem is that African Americans may not benefit from that research. Why? In a word: Tuskegee. The infamous, decades-long, secret study of black men with syphilis that led to so many unnecessary deaths left subsequent generations deeply—and rightly—suspicious of medical trials. Result: Hardly any African Americans have signed up for new Alzheimer’s drug trials. If the disease affects African Americans differently, who’s to say the new drugs will be suitable for them?
So on this day of civil rights celebration, I say to my fellow African Americans: Don’t be put off by a medical experiment long impugned and barred by law from reoccurring. Don’t squander the civil right to help cure a disease that disproportionately targets us. Sign up for Alzheimer’s trials, either by contacting the national Alzheimer’s Association or the Brain Health Registry. Join the fight.
To the president, heartfelt thanks for the new research funds—and a plea. Research is half the battle; home care is the other. According to Alz.org, for every $100 the National Institutes of Health spends on Alzheimer’s research, Medicare and Medicaid spend over $26,000 caring for those with the disease. Few Americans can cope with the costs; African Americans, as a group, are struggling even more than others.
Remember: “Our lives begin to end the day we become silent about things that matter.” At stake is everything Dr. King fought for.
Dan Gasby and B. Smith are co-authors, with Michael Shnayerson, of Before I Forget: Love, Hope, Help and Acceptances in Our Fight Against Alzheimer’s, published today by Harmony Books.