Beverley Francis-Gibson found the process of finding good information about sickle cell disease clinical trials to be timely, cumbersome and frustrating.
That’s why the president and CEO of the Sickle Cell Disease Association of America — based in Hanover — had the idea to launch the sickle cell disease clinical trial finder.
Now, with a few keystrokes on a computer, people affected by the disease can easily locate clinical trials near them.
Francis-Gibson originally broached the idea of the finder in January. Her organization partnered with Forma Therapeutics in Boston. The finder was launched in October during the organization’s national convention, held virtually. A marketing campaign will follow soon, she said. An app for IOS and Android also is scheduled to be launched later this year, she added.
“My hope is that this will help to educate patients about what they are and what they aren’t, and what type of questions they should ask,” explained Francis-Gibson, 58, a resident of Jessup. “It is intended to remove barriers for patient participation.”
The program will help patients better locate clinical trials by proximity and the types of trials available, and teach them about different types of trials, she added.
“We’re really trying to encourage clinical trial participation,” she said. “Their participation helps produce new therapies. Through that, we’ll have more drugs on the market for sickle cell patients.”
She added: “Many patients don’t know they exist. We’re really trying to raise awareness about the disease and the clinical trials.”
Sickle cell disease primarily affects those whose ancestors are from sub-Saharan Africa; South America, the Caribbean and Central America; Saudi Arabia; India; and Mediterranean countries. The disease, which is generally diagnosed at a young age, affects around 100,000 Americans. It occurs in about one out of every 365 Black births.
The blood-based disease is inherited and causes red blood cells to form a sickle shape, which results in blockages that prevent blood from circulating throughout the body. As a result, those affected by the disease can experience anemia, gallstones, stroke, chronic pain, organ damage and premature death. Currently, no cure exists.
Sickle cell disease has directly impacted Francis-Gibson’s family. While in high school, her cousin died from the disease and another relative is living with it.
In recent years, there have been a number of breakthroughs in treatments. Until 2019, there was just one FDA-approved drug, hydroxyurea, which combats sickle cell by making red blood cells larger. Then, in 2019, the FDA approved three additional drugs.
Francis-Gibson, a native of the U.S. Virgin Islands, who has both master’s and bachelor’s degrees from Eastern Kentucky University, said she wants to make patients aware of clinical trials as well as the therapies available to them.
Francis-Gibson has spent most of her professional career within the nonprofit world. She moved to Maryland in 2008 to work as president and CEO of The Columbia Foundation, which is now the Community Foundation of Howard County. She also worked as executive director of the National Alliance on Mental Illness Howard County.
Among her community service activities, Francis-Gibson chaired the board of Maryland Nonprofits and served on the boards of Leadership Howard County, Neighbor Ride and The Clarion Call. She also served on the education and training committee and mentoring task force for the Association of Community Services of Howard County.
Francis-Gibson said she’s confident there will be cure for sickle cell disease in her lifetime. The clinical trial finder is a step in the right direction, she said.
“There are so many companies that are invested and interested in sickle cell disease more than ever. There are 40 efforts underway. If we can get patients interested in them and participating in them, I think we will,” she said in finding a cure.
Tristan Lee, 38, also thinks a cure for sickle cell will occur in his lifetime.
“I really want everyone to know that just because you are born with sickle cell, it is not an end all, be all,” he said. “We are living longer lives and prosperous lives.”
Lee calls the clinical finder a game-changer for those like him who have sickle cell disease.
“I was just so overjoyed to hear about it,” said the fashion designer and author from Williamsport, Pennsylvania. “For someone like me who doesn’t live in a big city, this will be very helpful. I’m excited that this will come to fruition.”
Lee is impressed with the work Francis-Gibson has done since joining the Sickle Cell Disease Association.
“My hats and praises are always with President Gibson,” said Lee, who also works as a peer mentor with the association. “We have seen tremendous change across the board. We are so much better for knowing her and for her being an advocate for us.”
This article is part of our Newsmaker series that profiles notable people in the Baltimore region who are having an impact in our diverse communities. If you’d like to suggest someone who should be profiled, please send their name and a short description of what they are doing to make a difference to: Diversity, Equity, and Inclusion Editor Kamau High at firstname.lastname@example.org.