CHARLOTTE, N.C. — As the world races for a COVID-19 vaccine, it has never been more important for clinical trials to reflect the population at large.
The COVID-19 pandemic is taking an unequal toll on minority populations, but Black Americans are consistently underrepresented in clinical trials for diseases ranging from diabetes to heart disease to cancers.
It’s a broad problem that has repercussions across the healthcare spectrum.
Shelby Hollar,28, of Statesville knows the life-changing impact a clinical trial can have.
“I was on my deathbed in 2016,” she said.
Her mom, Candace Hollar, said the trial was her last chance and has made all the difference.
“She drives now, she walks, she’s out living life now,” she said.
Rhonda Long is hoping the clinical trial she learned about from Duke University helps her fight a rare form of bile duct cancer.
“I know the feeling of doom,” said long.
All prescription drugs must undergo clinical trials before FDA approval, but a lack of diverse representation, typically less than 5%-within those trials is threatening the effectiveness of treatment.
"If we're going to be developing new treatments and therapies for every segment of our population, then we have to understand how those new drugs work with every segment of our population," Dana Dornsife, Founder and CEO of the non-profit organization Lazarex said.
Dornsife saw first hand how difficult the clinical trial process was when her brother in law was diagnosed with pancreatic cancer. Her nonprofit helps patients, like Shelby and Rhonda, navigate their options and provides financial assistance for travel-related expenses
Like most clinical trial patients, they both travel out of state 1-2 times a month.
Both Shelby and Rhonda said without Lazarex they would not have been able to participate in clinical trials.
“And I wouldn’t be here,” said Shelby.
Airfare, hotels, Uber and parking all add up.
“Those prices are all over the place,” Long added.
The financial burden is often a barrier to clinical trial participation in minority communities, but it's not the only one.
“Historically there have been a lot of medical injustices,” said Dornsife. “And because of that, there is a lot of fear and a lot of mistrust, and that has been handed down through the generations.”
For example, in the Tuskegee study, Black participants were withheld penicillin treatments for Syphilis.
A lack of transportation and childcare, less awareness and access to healthcare are other factors making it difficult for minorities to participate in clinical trials.
“Many people go to their grave, never having known that they could have participated in a cancer clinical trial and we need to fix that,” Dornsife said.
For Long, the bigger impact of her participation is not lost on her.
“It touches my heart be a part of it," Dornsife said. "To be part of something that is going to give other patients hope other patients longer time to live and maybe even a cure for some patients.”
Editor's Note: A previous version of this story referred to Tuskegee Airmen instead of the Tuskegee Study. The story has been updated to remove any references to the Tuskegee Airmen.