Tamara Mobley thought hard about an offer to participate in a clinical trial to test a new treatment for multiple myeloma.
“You automatically think guinea pig,” said Mobley, 37, a Riverdale mother of two young sons.
Mobley, who works in online digital marketing for Google, was diagnosed in 2009 with the disease, a type of blood cancer in which plasma cells, which are found in the bone marrow, grow to dangerous levels, producing too much protein, damaging bones and creating other complications
She had already undergone aggressive chemotherapy and a stem cell transplant. She was now in a maintenance stage.
Would a trial be too risky? What are the side effects of the new treatment?
“I had come so far,” she said. “I didn’t want the drug to be a step backward.”
But one factor outweighed those concerns — she wanted to help other African-Americans who suffer from the disease.
Multiple myeloma affects African-Americans at a much higher rate than whites. In her trial, researchers at the Winship Cancer Institute at Emory University tested what was then a new drug, pomalidomide, in combination with an already-approved one. Her outcome was favorable.
“I was thinking about other black people and my children,” Mobley said. “I wanted to be part of finding a cure. This was not just about Tamara. I thought, hopefully I could make an impact and educate other African-Americans. I saw this as an opportunity to do something that would impact my community.”
Researchers are increasingly reaching out to more women, African-Americans, Asians and Latinos to take part in clinical trials. Studies have shown that some diseases have higher incident rates in African-Americans than, say, whites. And some drugs may metabolize differently in women than men, or blacks than whites.
In a major step, the U.S. Food and Drug Administration recently recommended that women and men take different dosages of Ambien, a popular sleep medication. It suggested cutting the dosage for women by half after research showed higher levels of the drug in their bodies the next morning.
At Winship, there are currently nearly 250 active therapeutic trials, which involve patients getting a treatment.
In the past there have been gaping disparities in participation in the field of medical research, said Dr. Bassel El-Rayes, associate director for clinical research at Winship.
But lately, he said, “there’s been a national push to make the playing field more equitable. We’ve seen improvement, but we still have a ways to go.”
The turning point occurred with passage of the National Institutes of Health Revitalization Act of 1993 that required NIH-supported clinical trials to include women and members of racial and ethnic groups.
If researchers are testing a new drug to treat hypertension but didn’t include women, blacks, Asians and Latinos, “then you can’t say these drugs are effective and safe in those other groups and that’s really important,” said Dr. Janine Austin Clayton, the director of the NIH Office of Research on Women’s Health. “Otherwise, you’re generalizing information from one group of people to another … and that’s just not good science.”
Joyce Balls-Berry, the director of the Office for Community Engagement in Research at the Mayo Clinic, said many women and racial and ethnic groups would participate if given the chance.
But for some, there remains some distrust about participating in clinical trials or research.
For many, it’s rooted in the history of the Tuskegee syphilis experiment that began in the 1930s.
In that case, the federal government sought to examine the progression of syphilis in rural Southern black men. Hundreds of men were recruited and told they were being treated for bad blood, a term that could mean anything from anemia to sexually transmitted diseases. In return, they were given free meals, a paltry insurance policy and free health care. Those that actually had syphilis were never told they had the disease and never received treatment.
According to the U.S. Centers for Disease Control and Prevention, even when penicillin became the main drug for treating syphilis in 1947, it was not given to the men.
The study went until the early 1970s.
It’s a far different story today.
Emory University’s School of Medicine and Children’s Healthcare of Atlanta plan to enroll as many as 100 people to participate in a multistate NIH clinical trial to determine how African-Americans respond to asthma treatment and react to various therapies.
African-Americans suffer a greater rate of serious asthma attacks, hospitalizations and asthma-related deaths than whites. There is also evidence that response to treatments may vary across racial groups.
Dr. Priscilla E. Igho-Pemu, the director of clinical trials at the Morehouse School of Medicine, reaches out to various organizations and goes to community health fairs and churches to spread the word about clinical trials and research. For some groups, it’s also a matter of having access to institutions and physicians who are conducting clinical trials.
“People are not likely to participate in a clinical trial unless they trust you,” she said. Igho-Pemu said people come up to her and ask what studies are available.
Igho-Pemu is the principal investigator of a study to look at what the ideal blood pressure should be to treat people to prevent dementia, stroke and heart failure. Of the 108 people enrolled in the study, 98 percent are African-American.
There’s an extra benefit to participation, she said. If researchers discovered other health-related problems, they are obligated to inform the participant. “We’re getting people who may not have seen a doctor in years,” she said.
Take Cornelious Purvis, 63, of Decatur, who has participated in several clinical trials at Morehouse.
The first time was over a decade ago when he saw a flier at a doctor’s office. He had just left his job and knew he had high blood pressure. The medications were expensive and he rationed them out. He wanted to see whether it was possible to get medications through Morehouse and to see about new therapy.
When he met with researchers, he found that his blood pressure was exceedingly high.
“It sort of scared me,” he said. “They told me my blood pressure was so high that I needed to get to a doctor right away. They literally saved my life.”
Now Purvis, a mortician, spreads the word about studies — even to people he has just met.
“The thing I like is that it helps me keep up with my health,” he said. “It puts me in a comfort zone.”