World Sickle Cell Awareness Day: Transforming Sickle Cell Care in the U.S. and Beyond

June 14, 2024

This article originally appeared in AABB News, a benefit of AABB membership. Join AABB today to read the rest of this month’s issue.

Sickle cell disease (SCD) remains a significant—yet largely neglected—global health crisis, impacting millions of people worldwide. Every year on June 19, countries throughout the world unite to celebrate World Sickle Cell Day. The international awareness day is observed to increase public knowledge of SCD.

“World Sickle Cell Day is an important day for shedding more light on the disease itself and bringing attention and awareness to the challenges and struggles that are experienced by patients with SCD as well as their families and caregivers,” stated Yvette C. Tanhehco, MD, PhD, MS, CABP, associate professor of pathology and cell biology at Columbia University Irving Medical Center/New York-Presbyterian Hospital.

The Global Alliance of Sickle Cell Disease Organizations (GASCDO) recently announced the theme for World Sickle Cell Day 2024: Hope Through Progress: Advancing Sickle Cell Care Globally.

“Globally, SCD affects millions of people of every race and ethnicity, although Africa has a large proportion of affected individuals,” stated Yvette Miller, MD, ABIHM, American Red Cross executive medical officer for the Donor and Client Support Center, headquartered in Charlotte, N.C. “World Sickle Cell Awareness Day provides an opportunity to focus on equitable delivery of health care to this patient population to improve health outcomes.”

Ivy Welch, MPA, manager of the Sickle Cell Disease Coalition (SCDC), noted that this year’s theme for World Sickle Cell Day highlights the significant progress in SCD research while acknowledging persistent challenges and fostering hope.

“The SCDC will support the theme by our Coalition member GASCDO by raising awareness through social media, newsletters, website updates and collaboration with other sickle cell organizations,” Welch said. “We look forward to celebrating the day and highlighting the great work of all Coalition members and partners globally.

A Step in the Right Direction

In December 2023, the Food and Drug Administration (FDA) announced the approval of the first two gene therapies to treat sickle cell disease (SCD) in patients 12 years and older in the United States: exagamglogene autotemcel (Casgevy, Vertex) and lovotibeglogene autotemcel (Lyfgenia, Bluebird Bio).

Tanhehco noted the new treatment is a step in the right direction for SCD treatment in the U.S., where the disease affects approximately 100,000 Americans. However, more work is necessary to improve accessibility and affordability for this patient population.

“The newly FDA-approved gene therapies provide the possibility of cure for everyone with SCD because they are no longer reliant on finding a matched-sibling donor or matched-unrelated allogeneic donor for hematopoietic stem cell transplantation. However, the price tags on these therapies are enormous and would pose a challenge for most, if not all, patients unless they are covered by insurance,” she noted. “This is a milestone in SCD treatment, and it can significantly improve the quality of life for patients with SCD. But, more work still needs to be done to overcome the existing challenges of manufacturing these drug products, such as improving collection efficiencies to minimize the number of collection cycles to obtain the starting material and minimizing cell loss during the manufacturing process.”

Terumo Blood and Cell Technologies, an AABB corporate partner and a GASCDO World Sickle Cell Month partner, spoke to AABB News about its commitment to prioritizing SCD as a critical health issue and improving access to treatment.

“Terumo Blood and Cell Technologies believes blood is essential medicine benefiting the sickle cell community; and we all play a vital role. Without matched blood availability and red blood cell exchange, patients may experience risk of stroke, iron overload, pain and eventually organ damage before they are able to access cell therapy solutions,” noted Joy Duemke, Terumo’s director of marketing. Duemke shared her company is actively supporting the work to ensure a sufficient blood supply, educating patients and physicians on blood therapies and driving better reimbursement and policy to extend access to care.

“We are supporting new sites for community-based apheresis medicine while optimizing collections for these patients for cell and gene therapies,” Duemke said. “We are committed to supporting and enabling better utilization and availability of blood therapy.”