The following are excerpts from an article originally published by the Boston Business Journal on July 21, 2023.
Sheila Phicil, who is Haitian American, spoke at a conference Thursday afternoon about her personal experience being prescribed a medicine which “was not designed” for her.
Phicil, now a director of innovation at Boston Medical Center, remembered a time when she felt like she had a cold and some neck pain, and one morning even broke out in hives all over her body. Her lymph nodes were swollen, and her feet were so inflamed it was painful to walk out of bed.
Later, she would be diagnosed with serum sickness and said she found out that a drug her doctor had prescribed to treat acne was known to give similar reactions to people of African descent, some of them fatal.
“That is why it is important that we have clinical trial diversity,” said Phicil at a diversity, equity and inclusion conference Thursday afternoon hosted by the state’s biotechnology industry group, MassBio.
Experts at the conference said that the biotech and healthcare industries still have work to do in closing inequity gaps by ensuring racially diverse participation in clinical trials. Meeting those goals will necessitate intentional outreach to communities of color, and building trust, they said.
Laura Williams, chief medical officer at Ardelyx Inc., said that access and communication are integral to keeping people of color involved during clinical trials. That could mean partnering with patient advocacy groups or paying for transportation to the site of a clinical trial.
“This isn’t just trying to make nice,” Williams said. “This is actually getting input from patients about, ‘This is the clinical trial we want to run. What do you think about it?’”