TWENTY-NINE

NEW YORK CITY

Fall 2014

I was fascinated—and appalled—that Alzheimer’s claimed so many African Americans. It was like this secret hidden in plain sight. And so I set out to make some sense of it all.

Back in the 1980s, as scientists started sequencing genes, they noted intriguing disparities between the genes in white and black Americans. One of those, APOE-e4, appeared to be more prevalent in blacks than whites: “overexpressed,” as the scientists put it. And that was intriguing, because the proportion of African Americans who get Alzheimer’s is greater than that of whites—up to 100 percent more. (In sheer numbers, of course, fewer blacks get Alzheimer’s than whites because there are fewer of them: they constitute about 14 percent of the US population. It’s the proportional disparity that’s so dramatic and troubling.) Maybe APOE-e4 became more damaging in tandem with some other gene in African Americans. Or maybe lifestyle-related factors increased the chance that APOE-e4 would start the process of forming amyloid plaques and tau tangles.

Back in 2002, Dr. Goldie Byrd, a biologist, did a sabbatical year at Duke University and got a close look at a research trial under way to learn more about the genetics of Alzheimer’s. In particular, the researchers were trying to understand the high incidence of Alzheimer’s among African Americans, but Dr. Byrd could see they didn’t have a prayer—not when only 43 of their 7,000 blood samples were from African Americans.

The researchers weren’t biased or careless. They were just up against decades of mistrust in the black community that came down to one word: Tuskegee. It was a word I knew well. Beginning in the early 1930s, federal researchers had enrolled six hundred poor Alabama sharecroppers in a long-term study of their “bad blood,” ostensibly to restore them to health. What the researchers meant by “bad blood” was syphilis. The sharecroppers weren’t told that most had the disease in its early stages, and that the study, based at the Tuskegee Institute, was being done to see how it would play out among them. Worse, when penicillin was proven by the late 1940s to eradicate syphilis, the sharecroppers weren’t given it. Not until word of the experiment leaked to the press in 1972 did the Tuskegee Syphilis Study get shut down. By then many men in the study had died; others had infected their wives; and children had been born with congenital syphilis. The study went down as the most glaring breach of bioethics in American history.

That was the history the Duke researchers were up against in 2002. It didn’t help that most of them were white.

Another visiting scientist at Duke, Margaret Pericak-Vance of the University of Miami, urged Dr. Byrd to start up a trial of her own, back at North Carolina A&T State University, where Goldie was a professor. The two ended up working together; they’re research partners still, and what they’ve built is unique: the first major Alzheimer’s research trial for African Americans in the United States.

“It was very helpful that we were in a historical black university, right in the middle of a big black community,” Dr. Byrd told me. Also that the lead investigator—Dr. Byrd herself—was black.

The trial was for African Americans already diagnosed with Alzheimer’s. It was just a research trial: no new drugs, just tracking the participants as their illness progressed. Many were too sick when the trial began to make up their own minds about whether to join; their caregivers had to decide for them. Before making that request, Goldie embarked on a listening tour of black communities. “What are your barriers?” she asked caregivers. “What do you need from us even after we ascertain that your loved one would qualify for the study?”

Tuskegee came up a lot. “It wasn’t the most sensitive thing,” Goldie told me. “People remembered that, but the most important thing was that they didn’t want their loved ones to be guinea pigs, used and abandoned.” That was a widespread fear even though this wasn’t a drug trial. Dr. Byrd and her team would just be studying their volunteers’ blood and tracking their cognitive decline. The point wasn’t to come up with a new miracle drug. It was to learn how Alzheimer’s affected African Americans—and ultimately, why such a higher proportion of blacks than whites got the disease. Eventually, many respondents came to view their loved ones’ involvement as a civic responsibility. “When they said they’d be in the study,” Dr. Byrd said, “they followed through.”

Goldie started with about 1,000 participants. By 2013, she and Pericak-Vance had joined forces with a national consortium of researchers, headed by Dr. Richard Mayeux of Columbia University, studying nearly 6,000 African Americans sixty years or older. Some had Alzheimer’s; others, the “control” participants, did not. No one had ever done a trial of this scope on the subject. The scientific goal: to determine whether certain genes put blacks at greater risk for Alzheimer’s than that of whites of European ancestry.

The consortium’s report, published in 2013, was both tantalizing and frustrating. It turned out that African Americans with Alzheimer’s are slightly more likely than whites to have a certain gene known as ABCA7, which in turn makes them somewhat more apt to get Alzheimer’s. But ABCA7 is relatively rare, so that even if the study suggested a clear cause and effect—which it didn’t—that would still leave 90 percent of Alzheimer’s in African Americans unexplained. As for the original bad actor, APOE-e4, it was found as often in whites as in African Americans. So it, too, failed to explain why so many more African Americans than whites get Alzheimer’s. But this, as Dr. Byrd reminded me, is how medical science advances: as often by ruling out theories as by ruling them in.

While Dr. Byrd works toward understanding the complex factors that lead to Alzheimer’s in African Americans, she’s already done something quite remarkable. She’s helped her whole community to get over the stigma of Alzheimer’s by doing the kind of outreach that all of us should support. As dean of arts and sciences at North Carolina A&T State University, she’s missed no chance to get out the word about it: to promote early testing and diagnosis, and get help for families struggling with the disease. She and her staffers and volunteers have done galas and auctions, sponsored conferences and fund-raising walks, gone to churches to get clergy and congregation to wear Alzheimer’s purple for raising awareness, staged town hall meetings and workshops, recruited the football team and cheerleaders to wave purple plumes, and flashed Alzheimer’s awareness messages on the stadium’s Jumbotron screen. Probably her most important outreach effort has come in response to what caregivers told her they needed most: support groups.

Imagine every town and city in America waving the Alzheimer’s purple, staging awareness and fund-raising events, knocking the stigma out of this awful disease, getting people tested sooner, and rallying everyone to join a research or clinical trial—because without volunteers, there will be no new drugs, and we’ll still be fighting a losing battle.

Last November, Dr. Byrd took her outreach operation one giant step further. With a $1 million grant from the pharmaceutical company Merck, she turned a 3,100-square-foot building into what she calls COAACH: the Center for Outreach in Alzheimer’s, Aging, and Community Health. It helps both patients and caregivers, links them as needed to the national Alzheimer’s Association—and basically does the home-care piece that doctors can’t afford to do. Hearing about what’s going on down at North Carolina A&T gives me hope—and with Alzheimer’s, that’s a damned good thing to feel.

—

Along with all these efforts, Dr. Goldie Byrd has helped found a national group called the African American Network Against Alzheimer’s. There’s some serious money behind it, and a lot of that comes from an unexpected source: a white former corporate lawyer named George Vradenburg, and his wife, Trish.

George was chief counsel at America Online and CBS, as well as a senior executive at AOL Time Warner and the Fox Broadcasting company. He might have retired to a life of yachting and golf. But George, like so many people who take up the fight against Alzheimer’s, had a personal motivation: his mother-in-law died of it. Trish was a highly successful television writer—for the show Designing Women—when that happened. She wrote a play about the impact of her mother’s illness on her whole family. The play was called Surviving Grace. Soon the Vradenburgs were hosting galas in Washington for the Alzheimer’s Association. By 2010, George and Trish had made Alzheimer’s their full-time cause. They formed a national group called USAgainstAlzheimer’s, an umbrella with various subgroups under it. One of those is the African American Network Against Alzheimer’s.

George and Trish are committed to helping back clinical research that leads to new breakthroughs in treatment. But they’re also focused on the home-care side. Last year, USAgainstAlzheimer’s funded the first major study of the cost of Alzheimer’s for black Americans. Its conclusions are shocking. Despite making up that modest 14 percent of the national population, blacks bear 30 percent of the costs of Alzheimer’s. In 2012, that came out to $71.6 billion of the roughly $215 billion overall cost to US families. Most of that money, the study found, was for caregivers. A lot of it was money paid to home health-care workers; much of the rest was counted as wages lost by family caregivers forced to cut back on or quit their jobs. The bulk of that $71.6 billion was spent in the southern states, where a black American’s odds of getting Alzheimer’s between the ages of 75 and 84 are at 1 in 3, and 1 in 2 by the age of 85. By 2050, the study’s authors predict, those costs will double as the number of blacks in old age soars.

Along with crunching the numbers, the study offers several hypotheses for why the incidence of Alzheimer’s among aging African Americans seems so much higher than that of whites. Along with whatever the gene story turns out to be, the study’s authors suggest that poor education may be one contributing factor, poor diet another. Those factors act to slow cognitive development; they literally slow growth of the brain. How unlikely is it then that late in life, an undernourished brain may be less able to ward off the amyloid plaques and tau tangles that lead to Alzheimer’s?

Environmental factors may also play a role. African Americans in the rural South often work amid dangerous toxins, from heavy metals to pesticides; the study’s authors suspect that physical stresses like these make a difference, too. For that matter, they theorize, the stress of poverty, exacerbated by racism and its own, unremitting psychological pressure, may help bring on Alzheimer’s for African Americans. Is it by chance that the incidence of Alzheimer’s for African Americans is highest in the rural South, where all these factors are at their highest? “I know everyone is skeptical about whether these are major factors,” Dr. Byrd told me. “But I do believe that socioeconomics contributes to health disparities.”

Dr. Byrd isn’t the only expert to harbor this suspicion. “In typical late-onset Alzheimer’s,” says Dr. John Hardy of the National Institute on Aging in a recent documentary on Alzheimer’s for HBO, “we know it isn’t a simple mutation. We expect it to be a mix of causes, of predispositions, some environmental and some genetic.” Hardy talks of “susceptibility genes” that may increase the risk of Alzheimer’s in various ways. Add a lifetime of poverty, debilitating work, and institutional racism, and the odds seem to shoot straight up—to diabetes, hypertension, vascular disease, and ultimately to Alzheimer’s.

Sorting out the exact roles that genetics, socioeconomics, and environment play in Alzheimer’s—and how each affects the other—may be the work of generations to come. Here’s one thing we know for sure, though: whatever role genes turn out to play in Alzheimer’s, our understanding will owe a lot to a poor black woman from Roanoke, Virginia, who grew up in a log cabin once used as slave quarters. In the unspooling history of Alzheimer’s and African Americans, one of the most significant figures is clearly Henrietta Lacks.

For most of her short life, nothing about Henrietta Lacks seemed likely to land her in the history of science. Born in 1920, she seemed healthy until the onset of a pain that turned out to be cervical cancer. At just thirty, with her symptoms worsening, Henrietta went to Johns Hopkins Hospital, where her doctor noticed that blood cells in her cervical tumor appeared to be outliving normal cells that typically lasted just a few days. Not only that: these unusual cells kept replicating in the petri dish. Doctors had never seen cells do that before. Their durability and powers of multiplication made them unique—and, in a sense, immortal.

Henrietta died soon after, but her cells kept replicating in petri dishes, and living long enough to be useful in a wide range of biomedical experiments. With them, Dr. Jonas Salk developed the polio vaccine. HeLa cells, as they became known, in a nod to their late donor’s first and last names, were put to use in cancer research, gene mapping, in vitro fertilization—and, yes, Alzheimer’s research. HeLa cells have been used in some seventy thousand medical studies, and counting.

Henrietta was never informed that her cells had been harvested and put into the service of medical science. Nor was her family, which remained poor while Henrietta’s unique cells lived on, making possible billion-dollar drugs and countless research advances. In 2010, Henrietta’s story was told in the bestselling The Immortal Life of Henrietta Lacks, by Rebecca Skloot. The book raised important ethical questions about how doctors should have handled HeLa cells all along. Shouldn’t they have sought Henrietta’s permission, and later her family’s, before using her cells? Didn’t her family have a right to say how, and when, HeLa cells could be used at all? And given that HeLa cells led to billion-dollar drugs, shouldn’t the family get some sort of compensation?

The debate was still reverberating in 2013 when Henrietta’s genome was sequenced—and published—by doctors who seemed oblivious to the trammeling of privacy rights for Henrietta’s descendants. By doing so, the doctors made public any and all genetic predispositions that Lacks family members had—to cancer, to bipolar disorder, and, yes, to Alzheimer’s—possibly stigmatizing them, even costing them jobs. Only then did the National Institutes of Health establish a clear protocol on how HeLa cells would be used from now on—by asking the Lacks family for permission.

HeLa cells haven’t yet led to the biomedical explanation for how Alzheimer’s begins and progresses. But almost certainly, when those explanations come, HeLa cells will have made that research possible. It’s quite a legacy already for a black Virginian woman whose family couldn’t even afford medical insurance—and a reminder that with Alzheimer’s, we’re all in this together: black and white. It’s the prisoner’s dilemma: two prisoners, manacled to each other, hoping to break out of jail. Neither one can do it without the other: if they’re going to make a break for it, they have to make it out—in step—together.

—

I was thrilled to learn that the campaign to get more African Americans into Alzheimer’s trials has an unofficial leader in the country’s most distinguished African American doctor: David Satcher.

Back in the mid-1990s, as director of the US Centers for Disease Control and Prevention, Dr. Satcher took a step toward redressing the overall problem of so few African Americans in drug trials of every kind. The nation needed to come to terms with the bitter legacy of Tuskegee. “I put together a commission,” he explained to me, “to see if we could put it behind us.”

Dr. Satcher showed the commission’s findings to President Clinton, who immediately agreed there should be a presidential apology, which he proceeded to issue on May 16, 1997. “I think seven of the participants were alive; they were there,” Satcher recalled. “But this wasn’t just an empty apology.” With it went a new bioethics center at Tuskegee where physicians and researchers could be trained in ethics research. Also, the president decreed, from now on the community in which a research trial was held would have to be involved from start to finish. (Henrietta Lacks’s genome was published by a research team based in Heidelberg, Germany, outside the pale of these new US guidelines.)

So in fact, there wouldn’t—couldn’t—ever be another Tuskegee, at least not in the United States. “But as you know, things get really clouded when it comes to race in this country,” Dr. Satcher observed, “so it’s not easy to put Tuskegee behind us.”

Dr. Satcher, who went on to serve as the country’s sixteenth surgeon general in the last two years of Clinton’s presidency and the first two years of George W. Bush’s, thinks the key to bringing African Americans into drug trials is getting their physicians involved. “People listen to their doctors,” Dr. Satcher noted. The more black doctors who urge their patients, with or without Alzheimer’s, to join research and clinical trials, the sooner those trials will have the 20 percent black volunteers they need. That, in turn, will lead to results that help explain why more African Americans get Alzheimer’s—and what drugs, in what dosages, are right for them.

As surgeon general, Dr. Satcher had the military rank of admiral, and the fancy uniform to go with it, set off with gold braid. At seventy-three, he’s still a striking figure with a public health message: that African Americans bear an undue burden of vascular disease, diabetes, and hypertension, as well as the four leading kinds of cancer: lung, prostate, colorectal, and breast. Genetics is part of it, but so, he’s convinced, are all those socioeconomic factors in the home, school, and workplace, from poor education to malnutrition to toxic substances that surround factory workers. Dr. Satcher feels sure that some if not all of those chronic diseases lead to Alzheimer’s, and he’s still doing all he can to get the word out, to raise both funding and awareness. Last year, he joined George Vradenburg and Dr. Goldie Byrd and about a dozen others in founding the African American Network Against Alzheimer’s.

“We’re way behind on research,” Dr. Satcher laments. “We need so much more federal funding, especially to address the high morbidity of African Americans from Alzheimer’s. And what do we do about that? Washington is so dysfunctional now. I remember when you could really organize and reason with people in the House and the Senate. Everything is so political now, it’s hard to get something done. If Obama proposes, you can bet on the Republican majority being against it. We just have to keep pushing, and educating, and building pressure for more research.” Ironically, as more and more American families struggle with Alzheimer’s, Dr. Satcher feels sure that pressure will build. “The burden of caregiving is so severe,” Dr. Satcher says with a sigh, “I know that most families can’t afford it. It saddens me that people are quitting their jobs to tend their sick parents or spouses.”

As a veteran viewer of the big picture, Dr. Satcher is especially frustrated these days by the contrast between funding for Alzheimer’s and the big bundle of federal money for Ebola. With the recent scare, he observes, the politicians went wildly overboard, responding to irrational public fears. The Obama administration went so far as to request $6 billion from Congress for Ebola prevention. “That’s more than the federal government has spent on Alzheimer’s research over the entirety of the last decade,” Dr. Satcher exclaims. And for what? “So far there have been four US cases of Ebola and two deaths. And while every death is tragic, an estimated five hundred thousand Americans will die this year because they have Alzheimer’s.”

Admittedly, Alzheimer’s is not contagious. “However,” Dr. Satcher says, “because it is driven by age-related demographics, its impact will grow as if it were. The number of Americans with Alzheimer’s will grow from more than five million today to as many as sixteen million by midcentury. Caring for people with Alzheimer’s will cost our country trillions in today’s dollars over this same period.

“If you happen to be more frightened by Ebola than by Alzheimer’s,” Dr. Satcher adds, “consider this. While there is virtually no chance of contracting Ebola in the US right now, the likelihood of developing Alzheimer’s or needing to care for someone with Alzheimer’s is staggering. Thankfully, some who have developed Ebola have survived. No one has yet survived Alzheimer’s.

“The bottom line on the big picture is this,” Dr. Satcher says. “Alzheimer’s is the most underrecognized threat to public health in the twenty-first century. If we have the resources to address Ebola, we have them for Alzheimer’s, too. It’s time to bring Alzheimer’s to the front of our agenda.”

As is the case for so many of the scientists and researchers working on Alzheimer’s, Dr. Satcher’s involvement is both professional and keenly personal: for more than a decade, he’s been the caregiver to his wife, Nola.

Long before Nola was diagnosed, the Satchers knew that her odds weren’t good: her mother came down with early-onset Alzheimer’s in her early sixties. Nola’s mother lived until ninety-three but spent her last fifteen years in an institution. Nola got her own diagnosis at about the same age her mother did.

Nola is still living at home, a tribute both to her strength of spirit—and to her family’s means. “She would not be at home if we didn’t have the resources and the family we have,” Dr. Satcher explains.

Nola was a poet, which makes her loss of language especially cruel. Until a year ago, she could recite long stretches of poetry, both others’ and her own. “Music, singing, poetry—they tend to endure longer than other things,” Dr. Satcher observes. “What is it about rhyme and music and poetry? Maybe the brain stores them somewhere safe as long as it can. My wife still remembers the words to songs in church.”

Dr. Satcher had heard about B.’s disappearance, and offered comforting words about that. “Nola went through the stage of walking off, too,” he told me. “That went on a couple years. You had to be quite aware of her moves; she was found walking out in the streets. But then she stopped, and we haven’t had that problem for quite a while.”

I asked if after all these years tending her, Dr. Satcher still had some semblance of a marriage with Nola, or if by now he was relegated solely to the roles of companion and caregiver. That was probably too personal a question, but the doctor took no offense. “We do have a meaningful relationship,” he said. “But it waxes and wanes. There are times, more now than even three months ago, where she will say, ‘What’s your name?’ If I say, ‘What do you think my name is?’ she’ll usually figure it out. Still, almost every day, she says, ‘I love you.’ ”

LESSONS LEARNED

A STORY OF TWO STATES

If there’s one thing I’ve learned about fighting back against Alzheimer’s, it’s that none of us can do it alone. We can’t deal with one case of it alone; we certainly can’t hope to make progress against it as a disease without a sustained campaign linking caregivers and home-based health workers, nonprofits and educational groups, doctors and scientists and professors, policy makers and politicians, church leaders and federal agencies, drug companies and medical venture capitalists—and let’s not forget book writers, and journalists and playwrights and filmmakers. Here’s another, simpler way to put it: we need individuals, and we need communities. The good news is that all these efforts are giving rise to new, vigorous community groups—groups that are helping patients and caregivers, getting out the word, and building the power for change. Our current president began as a community organizer. With faith and persistence, there’s no better way to build consensus and make things happen. One of the states that illustrates that is North Carolina, where Dr. Goldie Byrd has helped make the Center for Outreach in Alzheimer’s, Aging, and Community Health (COAACH) a driving force. The other is Minnesota.

In 2009, the Minnesota legislature declared enough was enough: Minnesotans with Alzheimer’s needed help, and so did their families. Recommendations were drawn up, and two years later, ACT on Alzheimer’s was established as a statewide network of volunteer stakeholders: medical, academic, business, and nonprofit, all dedicated to implementing those recommendations.

A lot of good initiatives soon fizzle out. Not ACT on Alzheimer’s. Look at the state map on its website (www.actonalz.org). Thirty-three communities from International Falls down to Harmony are red-dotted on that map. Click on the dots and feel the civic dedication radiating out from your screen. In Walker, for example, volunteers are heartily putting their 2013 action plan into gear. One of their two top priorities is resource access. “A common thread throughout our survey process was that people didn’t know where to go for resources about Alzheimer’s and dementia,” explains Melanie Deegan, Walker’s team leader, “so we want to educate about accessing resources.” That starts with encouraging Minnesotans to get early diagnosis and quality care, memory-loss services, emergency preparedness, and response—in short, all the stuff I wish that B. and I had had three years ago in the heart of New York City.

Priority two for the Walker volunteers is educating the Chamber of Commerce and local merchants about Alzheimer’s, and creating dementia-friendly stores and municipal services. Businesses that participate in a simple training course will get a dementia-friendly logo they can put on their store window.

The recent movie Still Alice, starring Julianne Moore, portrays a fifty-year-old woman’s descent into early Alzheimer’s. Socially it has been a huge help in educating communities about Alzheimer’s and—hopefully—lessening the stigma of the disease. At ACT on Alzheimer’s, not surprisingly, the movie and the book on which it was based have been used statewide as educational tools—all part of an ongoing campaign that includes everything from training local emergency responders to working with rabbis to creating memory cafés.

As far as I can tell, Minnesota is way ahead of most states in education and activism on Alzheimer’s, right up there with North Carolina. We need the other forty-eight to catch up.