Sickle cell comparative review to inform policy report: Providing evidence-based recommendations to tackle inequalities (June 2025)

Summary

Sickle cell is often described as a neglected disease, both globally and in the UK. Comparative research can provide valuable insights into inequalities to guide public health policies. This study analysed data across a wide range of indicators, by i) reviewing the literature and previous reports; ii) looking at research funding, financial resources of charities, scientific publications, clinical trials, approved drugs, dedicated disease registries and online awareness for sickle cell, cystic fibrosis and haemophilia; iii) analysing hospital admission data for these three conditions in relation to waiting times, length of hospital stays and estimated costs to the NHS; and iv) collecting evidence from patients about their lived experiences to complement the other parts of our analyses.

Some of the data reveals striking inequalities, which were often reflected in the experiences of patients living with sickle cell across the country. Nevertheless, evidence of these inequalities is not new, and this report adds further to the urgent need to address the underlying problems affecting the quality of care for patients with sickle cell. Importantly, this comparative research shows that improvements are also needed for other severe chronic conditions, such as cystic fibrosis and haemophilia, and that lessons can be learned from successes achieved in other specialties. This report includes a set of recommendations that aim to help tackle inequalities associated with sickle cell in the UK

Content

Recommendations

Better data

Improve data access and use

• Enable access to and use of routine epidemiological data on sickle cell, including mortality and life expectancy data, for monitoring and commissioning purposes (Department of Health and Social Care and NHS Race and Health Observatory).

Drive accountability through data

• Use data to ensure and track equitable provision of NHS sickle cell care, holding systems accountable and driving continuous improvement (Department of Health and Social Care).

Better support

Fund action-focused research

• Prioritise dedicated funding calls for research aimed at improving patient access, experiences, and outcomes, in sickle cell care (National Institute for Health and Care Research, UK Research and Innovation, and Wellcome).

Strengthen workforce education

• Expand education of healthcare professionals and the sickle cell workforce, including specialist nurses, to provide safe and timely care across the NHS for people with sickle cell (Department of Health and Social Care).

Better treatment

Ensure access to curative therapies

• Guarantee affordability and accessibility of new curative treatments, such as Casgevy, for all eligible patients (Department of Health and Social Care).

Embed equity in clinical guidelines

• Ensure existing and future clinical guidelines for sickle cell proactively address and reduce racial bias and inequity (National Institute for Health and Care Excellence in collaboration with NHS Race and Health Observatory).