Presented By Sanofi
Victoria Dibiaso MPH, Priscilla Pemu, MD,
Kasey Boynton, Constance D. Benson, Chris Lundy, BSCN
Victoria Dibiaso, MPH, Priscilla Pemu, MD, Kasey Boynton, Constance D. Benson, and Chris Lundy BSCN addressed the audience with vulnerability and expertise.
According to the Journal of American Medicine Pediatrics, “Sickle cell disease is one of the most common genetic disorders, affecting more than 100,000 individuals in the US and 20 million people worldwide.” It affects hemoglobin molecules through a genetic mutation.
Victoria Dibiaso, MPH, explained the goals of clinical trials to the audience. “These are scientific research studies where we evaluate how well a new potential medicine works and how safe it is,” she said. “As you can imagine, it’s important that it’s tested in the diverse and representative patient population.”
Boynton revealed how a personal interaction deepened her commitment to furthering inclusion in clinical trials. She questioned a doctor who was recommending a medication to treat her mother’s blood clots about the trial’s diversity and was appalled to find that it did not include diverse participants. Ultimately, the medication did not work for her mother, and the family was forced to choose another option, something they could have done from the beginning with the proper information. “That hit it for me. That really fortified why it is that I do what I do. Because the reality is that if we aren’t participating in clinical trials, we’re not then able to know whether or not these drugs are safe and effective for our own community. And when it’s your mom sitting there, who’s struggling for her life, you really, you don’t know how to respond,” she said.
As the medical community works to establish trust and connection with the Black community, Black patients like Benson and Lundy add context to the discourse.
Lundy, a bone marrow transplant recipient on track to be free of sickle cell anemia for 25 years, also shared his experiences.
Benson shared her experience of being cured of sickle cell and receiving a bone marrow transplant. She also spoke about her isolation as a clinical trial patient without spaces like the summit to connect her to people who shared her experience. “The thing about it is when you’re the first person, you are the first person, there is nobody that you could talk to, nobody that you can ask how it went,” she said.
Lundy confirmed that it can be difficult to get relevant when participating in something new. “There’s a lot more questions than answers,” he said. He explained that he and Benson are working to change that by being transparent and making information readily available for those considering their options. “Being in this space, now we’re able to pass that torch and say, hey, I’ve done this here, I am exhibit A that you can do this.”
Lundy stressed the importance of including Black patients in clinical trials. “We in this community need to be a part of this and need to help each other out,” he said. “Clinical trials are extremely important. We know the history of the healthcare system and the Black community, but we’ve got to be able to get out there and step out on faith.”
Dr. Pemu shared the “exciting” shifts taking place in sickle cell treatments being furthered by clinical research. Therapies have become more proactive than reactive in recent years. “25 years ago, all we could do was wait for something to happen and try to manage it,” she said. Today, that has changed. “So it’s not just waiting for them to have a crisis but shifting the types of hemoglobin that they present with so that they’re not as likely to have a crisis.”
Boynton commented on the implications of clinical trials for future generations of Black people.
“It’s not just about, you know, our individual health, and why we participate in clinical trials, but it’s for our future, the generations that are going to come beyond us to say, hey, we want to make sure that these drugs are effective in our community,” said Boynton. “We want to make sure that when we’re sitting in the doctor’s office, and that doctor is saying, ‘Hey, we want you to take this drug,’ we can make an informed decision about whether or not we think that’s the best option for our care treatment.”
