Key facts
- Fewer than 3% of US sickle cell patients receive red blood cell exchange therapy.
- 91% of US healthcare providers surveyed have access to red blood cell exchange technology.
- Barriers to administering the treatment include inter-departmental coordination challenges, limited donated blood supply, and lack of provider familiarity.
- Approximately 80% of sickle cell patients are on Medicaid.
- Sickle cell disease affects over 100,000 people in the US and 8 million worldwide.
- 90% of diagnosed sickle cell patients are non-Hispanic Black or African American.
Despite widespread access to red blood cell exchange technology in US hospitals, fewer than 3% of patients with sickle cell disease receive this effective treatment, according to new research. A nationally representative survey of 100 US-based healthcare providers who manage sickle cell patients revealed significant barriers to administering the procedure.
Providers identified challenges in coordinating between different medical departments, a limited supply of donated blood, and a general lack of familiarity with the procedure as primary obstacles. Only 5% of surveyed providers reported no barriers in delivering this type of treatment. For patients, a major concern revolved around whether health insurance would cover red blood cell exchange therapy.
Sickle cell disease, an inherited disorder affecting hemoglobin, causes less flexible, sickle-shaped red blood cells that can block blood flow. The disease impacts over 100,000 people in the US and 8 million globally, disproportionately affecting people of color. Dr. Aaron Haubner, lead author of the research, highlighted that access to these "new therapies" is out of reach for most patients due to a lack of coordinated care and essential support services in many communities.
Dr. Edward Donnell Ivy, chief medical officer at the Sickle Cell Disease Association of America, pointed to patients' lack of awareness about certain therapies and a gap in provider knowledge as additional barriers. He also noted that approximately 80% of sickle cell patients are on Medicaid and face socioeconomic vulnerabilities, with geographic location and access to rural hospitals further limiting treatment availability.
Dr. Shannon Kelly from UCSF Benioff Children’s Hospital Oakland explained that her institution often receives referrals from other large hospitals that lack dedicated apheresis programs for automated red blood cell exchange. She emphasized that the therapy is not available at enough institutions, forcing some patients to travel significant distances for treatment, which poses a hardship.