African-Americans often say no to clinical trials. Our reporter asked her mom ‘Why?’

Some of those blockbuster medicines could have an asterisk on the label that says: “Tested on middle-age white guys, but we’re hoping it helps you too.”

All the big-name medicines you know about are tested for safety and effectiveness before they reach the pharmacy shelf. And before that — hundreds or thousands of people had to agree to participate in the clinical trial. It’s how researchers find cures

However, women, people who live in rural communities, older adults, and members of ethnic and racial minorities are often missing from those studies. That means some of those blockbuster medicines could have an asterisk on the label that says: “Tested on middle-age white guys, but we’re hoping it helps you too.”

In particular, there’s a big, indisputable, “so-called” truth that it’s especially hard to get African-Americans to sign up for clinical trials. It’s complicated, of course, because it’s not clear that black people are being asked to volunteer in ways that are effective. Add to that: Hesitation among African-Americans is a subset of a national ambivalence about volunteering for medical research. Just 35 percent of all Americans are likely to enroll in a clinical trial, according to a survey from the Sloan Kettering Cancer Center in New York.

Why does a good mix of study participants matter? Scientists want to know if how people live (their experiences, education level, stress or income — any of these factors) makes a difference in whether a drug or treatment works or not.

“When we do include people of color in our research and in our clinical trials, we are much more likely to find how these treatments actually perform in the real world,” said cognitive neuroscientist Jonathan Jackson, a research fellow at Harvard Medical School. He’s looking for ways to detect dementia early — and is part of the Alzheimer’s Disease Research Center at Massachusetts General Hospital.

Across the country, African-Americans are “overrepresented in the disease, underrepresented in the research.”

Doctor’s don’t know why, but blacks are twice as likely as non-Hispanic whites to develop that dementia. About 3 percent of people enrolled in Alzheimer’s studies are African-American, according to Stephanie Monroe, director of the nonprofit African Americans Against Alzheimer’s in Washington, D.C. She says the representation should more closely mirror the U.S. population of blacks, which is near 14 percent. 

Many American don’t know what a clinical trial is or what they’ll be asked to do. The study could involve trying out a drug or placebo, but often there’s no medicine at all. Some testers just ask volunteers to change their diet or habits.

Some brain and memory researchers are recruiting older people because they want to take a noninvasive PET scan, a picture of the brain — to know better what a healthy older brain looks like as it ages.

Jackson’s message to reluctance people: “If you don’t want to be poked and prodded with a needle, we can still use your help.”

For example, investigators at the University of Pennsylvania are testing whether regular exercise can prevent people from losing brain function later in life.

Katie Nelson and about 10 other older black volunteers do African dance together three times a week as part of such a study.

“It’s good for my bones, it’s good for my spirit of learning different things — having a purpose,” Nelson said. “What I’m doing is helping me physically, mentally, and then it’s helping someone else.”

Volunteers dance as part of a study. (Holli Stephens/for WHYY)

My mom

My mom, Evelyn Williams English, is a great case study to explore African-Americans’ reluctance to join clinical research.

My uncle, her brother, died of dementia 19 years ago, and she’s been thinking about Alzheimer’s ever since.

At age 74, she doesn’t take any medicine. She power-walks a couple of times a week. She does yoga on Thursday mornings. Officially she’s retired, but after teaching for 35 years, now she’s a consultant helping schools with child literacy.

My mom is active, social. If I were a brain researcher; I’d want to study her.

When I go visit, if I make dinner, I can get her to speak with me about almost anything. So I made bacon-jalapeno jam and street corn. She washed the dishes and doctored up my store-bought potato salad with a sprinkle of paprika.

“I don’t see there’s much happening to slow the progression or cure it. I don’t know if there could be a cure. I don’t hear much going on,” she said. “Am I missing something?”

That’s exactly right. No cure yet, but there is medication to help with confusion or memory troubles. The last Alzheimer’s breakthrough drug came out more than decade ago. And hundreds of scientists are searching the next big therapy.

Turns out, one of my mother’s specialists and her primary care doctor have asked her to be in a study.

“Each time I go, she’ll say: ‘Do you want to talk more about helping others out?'” my mom said.

The answer is ‘no.’

To mom, “clinical trial” sounds a lot like “experiment.” Plus she has no intention of blindly taking medicine. Her rule: Don’t put anything in your body — even a sugar pill — if you don’t need it. That’s how she was raised in Redbird, Oklahoma, an all-black town of maybe 500 people.

“You let healing happen,” she said. “Medication wasn’t something you took lightly. It’s a risk to me I’d prefer not to take right now.”

She does have a friend who’s enrolled in a clinical trial.

“But she has all kinds of illnesses,” she said of her friend. “And this is very crude to say, but I don’t know what she has to lose.”

Actually researchers need healthy volunteers, too. But many Americans think a clinical trial is only for sick people — a ‘last resort’ for patients who’ve tried everything else.

My mother’s reluctance goes beyond that.

She was born in 1941 and remembers the Tuskegee Syphilis Study. That’s the clinical trial where the U.S. Public Health Service withheld effective, available medicine from hundreds of black men. And the researchers lied to the volunteers.

“It planted a distrust in my mind for the medical professions and their regard, or lack of regard, for black people. Now that’s probably a very old scar that I’m still putting cocoa butter on. That’s an old wound that I’m still trying to heal. And it hasn’t been that long that I’ve begun to get respect,” she said.

She’s had great health care along the way but says she’s also dealt with callousness and racial slights from doctors and nurses. Today we’d call those moments micro aggressions. “It’s still happening,” she said.

“And you can’t ask somebody to get over something that’s still happening,” researcher Jonathan Jackson said.

History lesson

Jackson grew up on a farm in East Texas. If he were asking my mom to join a clinical trial, she might say yes.

“When I introduce myself as a Harvard medical school researcher — and they see that I have this black face — that does confer a degree of trust. The black community has really embraced me as one of their own who’s made it,” Jackson said.

He makes time to speak with people about clinical trials — and at a recent talk at a senior center in Boston, he started with a history lesson of U.S. “medical atrocities” and said much of his research came from Harriet Washington’s book “Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.”

Jackson’s talk began with the father of modern gynecology, Marion Sims.

“He perfected his technique on purchased — or sometimes just borrowed — slaves, female slaves, without the benefit of anesthesia, which wasn’t widely available at the time,” Jackson said. “These techniques were so tortuous, and so painful, and so awful to witness, that all of his other medical school colleagues left the room. That left the slaves to hold each other down when they weren’t being operated on,” he said.

The room got quiet, and at that point, people seemed to shift uncomfortably in their seats, but Jackson kept going, because he says the abuses and failure kept going.

In 1915, a government doctor fed prisoners, some black, some not, in Mississippi a diet without fresh meat or vegetables — to see if he could induce a debilitating skin disease called pellagra. It worked.

In Lyles Station, Indiana, in 1927, hospital workers radiated the heads of 10 black children — and disfigured them for life. Their families were told the children were being treated for ringworm.

In 1945, a construction worker in Tennessee had an auto accident and went to the hospital with several broken bones. The Army doctors there injected him with plutonium — without his consent — and waited nearly three weeks before they reset his fractures.

“What we find is that this story happens again and again to individuals who are unlikely to speak up, to individuals who are disenfranchised, and in this case to individuals who tend to be black,” Jackson said during his lecture.

“In 1990, the Centers for Disease Control injected 1,500 black and Latino infants with an experimental measles vaccine that hadn’t been approved.”

Unethical experimentation and unequal treatment didn’t start — or end — with the Tuskegee Syphilis Study, but Jackson says that’s where lots of people get stuck.

When his research group hired a public relations firm to help recruit African-Americans for clinical trials, Jackson says the communications pros drafted an essay that was supposed to run in the local paper.

“They said, ‘Tuskegee was a long time ago — and President Bill Clinton even apologized in 1997.’ And they actually used this phrase: ‘We need to get over Tuskegee,'” said Jackson. “It was very clear some white folks who don’t know anything about Tuskegee wrote this. I said that to my boss, and fortunately she buried it, and so it never saw the light of day.”

The right recruitment

The government spends billions of dollars on biomedical research — and scientists are required to include minorities in their studies. The National Institutes of Health made that changed back in 1993. But there aren’t great guidelines to show investigators how to reach that goal. And critics say, even worse, there aren’t real penalties for scientists when they fail.

For the huge A4 Study (short for Anti-Amyloid Treatment in Asymptomatic Alzheimer’s), research leader Reisa Sperling has added an unusual requirement to the search for participants.

For every five candidates who are screened to participate, outreach workers need to bring in one candidate of color. A4 is testing whether an investigational medicine can slow memory loss caused by Alzheimer’s disease.

“She’s put a number behind the wish for diversity,” said Tamy-Fee Meneide — who at the time was a clinical research diversity coordinator for the Harvard Aging Brain Study.

So all sorts of groups have launched campaigns to boost diversity in clinical trials. There are awareness campaigns from huge pharmaceutical lobbying groups and from grassroots nonprofits, like Stephanie Monroe’s group, African Americans Against Alzheimer’s

The nonprofit commissioned a traveling play called “Forget Me Not,” by a black playwright, starring an all-black cast.

“They get a little gospel music, they’re getting education, and they’re seeing what the disease looks like, which is very different than coming into a symposium and having a bunch of doctors talk to you,” Monroe said. “People after the play will say, ‘That looked just like my Aunt Selma,’ or also they will also see the symptoms, and they’ll say, ‘You know, I think my dad may have this disease,’ because they’ve now seen it.”

At every performance, the organizers ask: Would you consider volunteering for medical research? Monroe says about 80 to 85 percent of the time, audience members say they’re interested. Who knows if they’d actually, really ever join a clinical trial, but attitudes shift.

“What can we do to make it easy for them to get to ‘yes’? That’s the issue,” Monroe said.

If you’re a university or hospital researcher, maybe offer free parking, a Target gift card, or some other small token to let people know you appreciate their time and effort, she said.

Monroe says it’s time to stop calling people “study subjects.” Even if it’s just semantics, “volunteer” or “participant” just sound a lot more welcoming. Also it’s nice if someone on the research team looks like the people you are trying to recruit.

“Or is the only person they are going to see that looks like them the janitor?”

Tamy-Fee Meneide says there are consequences when researchers don’t find a good mix of study participants.

“This drug works but only for upper-middle-class, highly educated white folks? That’s not OK,” Meneide said.

Massachusetts General Hospital, where Meneide worked, wants to enroll harder-to-reach people, but the team waits for African-American leaders and gatekeepers to vouch for the study before they start recruiting.

“When I think about MGH and why it doesn’t have good rapport in the community, it’s because they never have gone into the community to do the work to engage the people they quote-unquote want to serve,” Meneide said. “We have the resources at MGH to really turn this perspective around in the community.”

Meneide said she wishes scientists and colleagues would step away from the research bench more often to talk about how important clinical trials are, acknowledge past abuses and explain what has changed.

Attitudes shift

In my mom’s kitchen, she and I talked about all of that. I asked: “With our family history and higher risk for Alzheimer’s, what if the cure comes next year? What if the medicine was only tested on white people — and what if it doesn’t work as well for the rest of us?”

“It’s a catch-22 situation,” she said.

She wants to help, but she’s not willing to join a clinical trial.

“What I’m doing is very dangerous. For Aiden. It is for Julian. It is for Alexis. It is for Jailen,” she said.

Those are the grandchildren, of course. For Evelyn English, it always comes back to the grandkids.

The next morning as I rolled my bag to the car and was packing up to leave, my mom stopped me and wanted to talk about clinical trials again.

“This doesn’t follow what I’ve said in the past, but I might be inclined to say ‘yes’ to find something that would make a difference to me personally, to my family personally — and other blacks, so, I might be inclined to say ‘yes,’ at this point,” she said. “Maybe.”