Why Sickle Cell Drug Options Are Underwhelming

The International Sickle Cell World Assessment Survey (SWAY) analysis presented at the American Society of Hematology (ASH) 2021 Meeting in Atlanta this weekend showed a global divide between care providers and patients on perspectives and needs in the current state of sickle cell disease management.

The analysis, presented by Ify Osunkwo, MD, MPH, of the Sickle Cell Disease Enterprise, Levine Cancer Institute at Wake Forest School of Medicine, observed global regional key differences between patients and clinicians on the subjects of therapies, access, and communication in their dynamic within treating the disease.

In the second segment of an interview with HCPLive, Osunkwo expanded on the most pressing burdens sickle cell disease patients face as observed in SWAY—most notably, the lack of available therapies.

When asked what percentage of patients with sickle cell disease patients may believe there are not diverse enough options for care, Osunkwo replied, “almost all of them.”

“There’s 4 drugs, and not every drug works for every genotype. And some of the treatments are pretty invasive,” Osunkwo saids. “If you’re going to get transfusions, that’s a pretty invasive treatment option, and that’s not ideal. Patients don’t want to have to come every month to get a blood transfusion, get stuck all the time. And every drug has a side effect.”

Osunkwo expressed a desire for sickle cell disease to become a field more similar to other chronic diseases like diabetes and rheumatoid arthritis, which feature varying drug classes and methods of care for all patients.

“They want to know that whatever option they pick, that they have a choice, that they understand it, and that whatever side effects it has are compatible with them,” Osunkwo said.

She also discussed a difference in sickle cell crisis pain management defined by SWAY, in that most patients fear opioid prescriptions due to short- and long-term toxicity issues—while emergency physicians frequently prefer prescribing opioids in such circumstances.

“Providers think the patients are worried more about the pain; patients are more worried about their quality of life,” Osunkwo said. “Providers think that patients are having a lot less mental health complications.”