Section of the session: clinical trials – the importance of diversity, community engagement and the education of sickleness diseases

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 approached the public with vulnerability and expertise.

According to the Journal of American Medicine Pediatrics, “sickle cell anemia is one of the most common genetic disorders, affecting more than 100,000 people in the United States and 20 million people worldwide.” It affects hemoglobin molecules by a genetic mutation.

Victoria Dibiaso, MPH, explained the objectives of clinical trials to the public. “These are scientific research studies where we assess to what extent a new potential medication works and how sure it is,” she said. “As you can imagine, it is important that it is tested in the population of various and representative patients.”

Boynton revealed how personal interaction has deepened his commitment to promote inclusion in clinical trials. She questioned a doctor who recommended a medication to treat her mother’s blood clots on the diversity of the test and was dismayed to find that she did not include various participants. In the end, the drug did not work for his mother, and the family was forced to choose another option, which they could have done from the start with the appropriate information. “It struck me.

While the medical community works to establish confidence and connection with the black community, black patients like Benson and Lundy add a context to discourse.

Lundy, a recipient of bone marrow transplant on the right track to be free from falciform anemia for 25 years, also shared her experiences.

Benson shared his experience of being healed from sickle cell anemia and receiving a bone marrow transplant. She also talked about her isolation as a clinical trial patient without spaces like the summit to connect it to people who shared her experience. “The thing about this is that when you are the first person, you are the first person, there is no one to talk to, no one you can ask for how it happened,” she said.

Lundy has confirmed that it can be difficult to be relevant when he participates in something new. “There are many more questions than answers,” he said. He explained that he and Benson work to change this by being transparent and making the information easily available for those who envisage their options. “Being in this space, now we can pass this torch and say, hey, I did this here, I am a piece to that you can do that.”

Lundy stressed the importance of including black patients in clinical trials. “In this community, we must be part of it and have to help each other,” he said. “The clinical trials are extremely important. We know the history of the health system and the black community, but we must be able to get out and go out on faith. ”

Dr. PEMU shared the “exciting” changes that take place in sickle cell treatments which are prosecuted by clinical research. Therapies have become more proactive than reactive in recent years. “25 years ago, all we could do was wait until something happened and try to manage it,” she said. Today it has changed. “So, it is not just waiting for them to make a crisis but to move the types of hemoglobin with which they present so that they are not as likely to have a crisis.”

Boynton commented the implications of clinical trials for future generations of blacks.

“It is not only a question, you know, of our individual health, and why we participate in clinical trials, but it is for our future, the generations that will surpass us to tell us, hey, we want to make sure that these drugs are effective in our community,” said Boynton. “We want to make sure that when we sit in the doctor’s office and the doctor says:” Hey, we want you to take this medication “, we can make an informed decision that we think or not the best option for our care treatment.”