BALTIMORE: People with sickle cell disease are often met with skepticism, which keeps them from getting the help they need, according to the leaders behind a public service announcement campaign.
Sickle Cell Disease Association of America and Forma Therapeutics, a biopharmaceutical company, recently launched Believe it! to build understanding of the blood disorder that affects about 100,000 people in the U.S. and is more common among Black and Hispanic Americans, according to the Centers for Disease Control and Prevention.
The inherited disorder can cause acute chest syndrome, anemia and blood clots, among other issues.
Patients also often must confront a lack of understanding, said Dr. Ifeyinwa Osunkwo, SVP and chief patient officer at Forma Therapeutics, which is developing etavopivat, a potential therapy for the disease.
“What we heard repeatedly from people living with sickle cell and from those who take care of people with sickle cell disease is that one of the primary barriers to getting good care is that they are not believed,” Osunkwo said. “We want people to really believe that sickle cell is real. The pain is real. The suffering is real, and just because I don't look a certain kind of way” doesn't “mean that I'm not ill.”
The two groups started working on the PSA in 2021. Fela, a production company, and Anderson DDB Health & Lifestyle, a health and lifestyle agency, donated their time to create the campaign, according to PR firm Porter Novelli.
The PSA video, which was directed by LeSean Harris and released in late September, opens with a Black student looking panicked as a teacher delivers a lesson in the front of the class. The room then darkens around the student as he looks at his hands and explains the disease in a voiceover.
“Living with sickle cell disease is torture,” he says.
The teacher asks him to share with the class, but we instead see him in a hospital gown walking across hot coals.
“Everyday tasks can be filled with pain,” he says. “I am one out of every 365 African Americans who have sickle cell disease. You can't see our pain, but please — believe it.”
The organizations wanted to depict a young man who “looks like he’s fine,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association. “You can see he is worried, but you don't have a clue the depth of his worry and the depth of his concern, and that is exactly the experience for many warriors [with sickle cell].”
The ad directs people to visit SCDBelieveit.org, which provides information on the disease. The campaign also features a radio PSA. The ads will run on television networks and radio stations around the U.S., according to a press release.
A 2015 report in the medical journal Blood examined the distrust between physicians and patients with sickle cell disease.
“A gap in trust between patients with sickle cell disease and medical providers is well recognized, largely originating from repetitive requests for opioid analgesics,” the report states. “Although expert clinical care guidelines in sickle cell disease are available, they rarely address measures by which this endemic gap in trust may be narrowed to fulfill the goals of medicine.”
Hartfield thinks the campaign will help build understanding of people’s experience with sickle cell.
“If it helps one person feel visible, one warrior feel visible, feel seen, that in and of itself is a success,” she said.