"A lack of education about sickle cell disease within the wider healthcare community, including pharmacy, greatly contributes to disparities in care"
Despite being the most common genetic disorder in the UK, sickle cell disease (SCD) remains significantly underfunded and underserved compared to other genetic disorders, according to a new report published by the PDA BAME (Black, Asian and Minority Ethnic) Pharmacists' Network.
The report also reveals that the disease is poorly understood within the healthcare system, including amongst pharmacists, pharmacy students, and foundation pharmacists in the UK.
It emphasises the urgent need for increased awareness, funding, and improved healthcare access for SCD amongst these healthcare professionals.
“A lack of education about SCD within the wider healthcare community, including pharmacy, greatly contributes to disparities in care.
“Though the importance of SCD education for pharmacists and allied healthcare professionals is acknowledged, it remains unclear whether this topic is adequately addressed within the MPharm curriculum,” the report said.
The report further noted that in the absence of explicit guidance from the General Pharmaceutical Council (GPhC) or the Pharmaceutical Society of Northern Ireland (PSNI) and without more comprehensive education surrounding SCD embedded within the pharmacy curriculum, pharmacists and future pharmacists may remain “ill-prepared to manage patients with this complex condition.”
As per the report, sickle cell disease is the most prevalent genetic disorder globally, impacting millions, including around 17,000 people in England.
As of 2023, it was the most common and fastest-growing genetic disorder in the UK. While the disease is most commonly seen in people of African or African-Caribbean backgrounds, it can affect anyone who inherits the abnormal haemoglobin genes that cause Sickle Cell Trait (SCT) or SCD.
It is estimated that approximately 1 in 79 babies born in the UK carry the Sickle Cell Trait, and almost 300 babies are diagnosed with SCD each year through the NHS Newborn Screening Programme.
Despite its widespread prevalence, SCD continues to be significantly underfunded.
The report highlighted that between 2021 and 2022, the National Institute for Health and Care Research (NIHR) allocated £2,440,800 for Cystic Fibrosis research, whereas funding for SCD was only £943,602.
Furthermore, it raised concern that many individuals with the disease remain undiagnosed, particularly among ethnic minority groups, due to several factors—such as the lack of screening among immigrant and ethnic minority populations, variability in disease presentation, limited awareness, and barriers to accessing healthcare services.
Prevention and Treatment
The PDA BAME Network report noted that early detection through newborn screening is crucial for preventing complications and improving outcomes, though parents can opt out of screening for SCD.
Currently, licensed treatments for sickle cell disease mainly focus on pain management and addressing complications as they occur.
Recently, the UK approved the world’s first gene therapy for SCD. However, the report revealed that access to this groundbreaking treatment remains limited due to its “high cost.”
The report underscored that improving access to SCD care requires a better distribution of specialist units across the UK, and greater collaboration between healthcare providers to ensure that patients receive treatment in a timely and appropriate manner.
Furthermore, it highlighted pharmacists can play a crucial role in advocating for increased funding for SCD research and the development of more affordable, accessible, and inclusive treatment plans.
“Raising awareness about SCD within the pharmacy community and promoting health equity is essential for improving care outcomes for all patients, regardless of their background,” it added.
