Distrust in medical establishment is one of a multitude of reasons Black Americans are woefully underrepresented in lung cancer clinical trials. A new American Lung Association campaign is trying to change that and is relying on trustworthy Black voices to help.
The pharma-backed “Awareness, Trust and Action” campaign launched for Black History Month and is running through the end of March. It includes video messages from members of the Black community including the pastor of a Houston, Texas church, a cardiothoracic surgeon from Chicago and a lung cancer patient who is participating in a clinical trial.
“Between the three of them we feel like there are several trusted voices that might be relatable to a wide range of people and a wide range of ages, ” Carly Ornstein, the lung association’s project manager for the campaign, said in an interview.
The campaign aims to reverse a troubling lack of diversity in clinical cancer research, with Black Americans making up just 3.1% of participants in all cancer drug clinical trials, according to the lung association.
That’s problematic not only because clinical trials are sometimes a patient’s best or only treatment option but also because trial diversity can let researchers know how a drug works in different populations, said Ornstein.
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“People react differently to different medications, and we’re learning that not every cancer is the same,” Ornstein said. “So it’s important to have a diverse group of people that are helping influence drug development.”
The problem is especially concerning when it comes to lung cancer. Not only is it the leading cancer killer among people in the U.S., but as the campaign points out, Black Americans are more likely than whites to die from the disease.
In one video on the campaign website, Sheena Payne talks about enrolling in a clinical trial at her oncologist’s suggestion after being diagnosed with stage four lung cancer in March 2020. She acknowledges people in the Black community may be hesitant. Past injustices around medical experimentation involving African Americans has left many distrustful.
“I know a lot of it has to do with trust. And believe me, I get that. But when you think about your healthcare … your body is your temple,” she says, quoting the Bible. “Taking care of it and making sure that we find the right providers that can help us is very critical.”
In a second video, Chicago cardiothoracic surgeon Ozuru Ukoha, MD, and Houston pastor Willie J. Collins drive home the idea that “participation equals representation.” Ukoha points out that participating in a clinical trial gives his patients access to cutting-edge cancer treatments while paving the way for future patients of the same ethnic group.
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Collins, the pastor, says that with equal representation there could be “so many good things that could come out of a clinical trial,” but most people in his community aren’t aware of the opportunities.
The campaign is running nationwide on social media, in print and display ads and in videos shared with doctors’ offices. Targeted promotions are running in Philadelphia, Houston and Chicago, cities with high rates of lung cancer deaths in the Black population and located close to large cancer research institutions where there’s likely to be an available trial, Ornstein said.
Although the lung association developed the messaging, the campaign has financial support from cancer drug powerhouses AstraZeneca, Bristol Myers Squibb, Merck and Roche’s Genentech, which compete in the lung cancer market with their respective immunotherapy drugs Tagrisso, Opdivo, Keytruda and Tecentriq.
The lung association isn’t saying how much the pharma companies are contributing to the effort, but the industry as a whole has made investments over the last two years in efforts to improve clinical trial diversity, part of a larger push to address health disparities brought to light and worsened by the pandemic.
BMS in late 2020 committed $300 million over five years to tackle health inequities, earmarking $100 million of that sum toward clinical trial diversity with a program to train 250 new clinical investigators from racially and ethnically diverse backgrounds.
Roche’s Genentech announced last summer that it created a new coalition of clinical research sites aimed at boosting diversity in oncology studies, while AstraZeneca last year started allowing patients to take part in clinical trials from their homes in hopes it would break down barriers to participation.
