INDIANAPOLIS — A clinical trial is how researchers test new drugs and treatments to make sure they’re safe and effective. But in most trials in the United States, there is barely any diversity, if any at all.
For some, it might seem like an overwhelming problem to tackle, but for an Indianapolis oncologist and his daughter, it’s an injustice they are taking on together.
“Truth be told, when I was little, I was obsessed with Martin Luther King!” Maya Birhiray said, sitting in her dad’s office at Hematology Oncology of Indiana. “I knew everything about him.”
Dr. Ruemu Birhiray made sure his daughter Maya understood what came before her.
“It was just always a really, really important thing,” she said. “My parents emphasized that we knew where we came from and made sure that we understood the shoulders we were standing on.”
Dr. Birhiray came to the U.S. from Nigeria thirty years ago.
“As you get a little older, I think you begin to think beyond your immediate career, and you begin to say, what have I contributed to this society?” Dr. Birhiray said. “American society has been very kind to me. I’ve been successful here, but I hope that I will leave something behind when I leave here.”
Maya, who is 23 and studying to be a pediatrician, wants to change the course of history, too. Together they have devised a plan to get more minorities in medical trials.
Dr. Birhiray explains the problem with an example.
“Imagine if there was a study and I’m offering you a drug and 90% of the people in the study were black and only 10%, maybe even less than that, were white. You would wonder if that’s applicable to you,” said Dr. Birhiray.
Clinical trial diversity: by the numbers
Statistics make his point plain to see.
Between 2008-2018, 7.8% of 230 trials included the four major races in the US. White patients made up more than 76% of the participants, while only 3% were Black patients. Asians and Hispanics didn’t fare much better, making up just 18.3% and 6.1% respectively.
“Thirty years ago, we learned that testing medications on only male populations wasn’t going to work for the female population,” said Maya. “We learned that lesson already. Why are we still learning the same lesson over and over again and thinking that we can test in one population and expect it to work for another?”
The Birhirays study published in Blood Advances outlines a five-step approach to “drive” change.
D: Diversity officer
R: Ranking studies
I: Individual plan
V: Verification of diversity with a score
E: Elevate and enhance training
As for a diversity officer, they say major corporations have one, so why not cancer trials?
Dr. Birhiray is incredibly passionate about the “R.” Studies would be ranked based on diversity. He says just as in sports, once you start keeping score, everyone will want to win.
Each individual team member would be given a personalized diversity, equity, inclusion and access plan.
Studies would be verified with a score, where a minimum score must be met to present at major medical meetings and be published in trade journals.
And finally, they would elevate and enhance the training of minority investigators and research team members. Training should include physicians, advanced providers, nurses, social workers, pharmacists, navigators, medical assistants, students and other members of the clinical and research team.
They say enacting DRIVE strategies will create long-term permanent shifts in behavior and will have a ripple effect on medical research, education and treatment.
What are the other solutions?
So what can the average person do in the meantime?
“If we as people call upon pharmaceutical companies and say, why is everyone not represented in your study, what do you think would happen?” said Dr. Birhiray. “I think everyone should be asking those questions. I think it will force change. Frequently we rely on government to change everything, but the truth is that the power lies in all of us and we can make a significant change.”
Dr. Birhiray pointed out there are many other lack of diversity issues, like age, gender and fear of not being treated as an equal.
Dr. Birhiray and Maya say their age difference really helped because they each had different perspectives to bring to the table.
“She really brings to my attention a perspective that I may not even have. I’m really proud of her. I can see her leading the charge one day when I’m no longer here,” Dr. Birhiray said.
Going forward, they are focusing on advocacy. The Birhirays have a nonprofit called Indy Hematology Education, Inc.
And the father-daughter duo is already working on a new collaboration.
“As MLK said in 1966, of all the injustices, the most egregious is healthcare and that is so true and it’s still true today,” said Dr. Birhiray.