Systemic Lupus Erythematosus (SLE) and treatment with belimumab

This report assesses the feasibility of using routinely collected data to evaluate equity of access to belimumab, a high‑cost treatment for SLE.

It describes the identification of patients treated with belimumab in England using NHS England’s high‑cost drug prior approval system (Blueteq) and explores approaches to defining the eligible untreated population using Hospital Episode Statistics (HES). The analysis examines key sociodemographic, clinical and geographical factors, including age, gender, deprivation, ethnicity, treatment patterns, comorbidities and travel time to a specialist centres.

Acknowledgement

This work uses data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Disease Registration Service, which is part of NHS England.

This proof of concept study explores the feasibility of using routinely collected datasets to assess equity of access to high‑cost drugs for rare conditions in England.

The Department of Health and Social Care’s Rare Diseases Action Plan 2025 highlights the need for robust, evidence‑based research on access to high‑cost medicines for rare conditions.

This report responds directly to that priority by outlining a data‑driven framework and demonstrating analytical methods that could support future policy development and commissioning decisions.

You can find out more about the England Rare Diseases Action Plan 2025 on GOV.UK

This report was produced by the National Disease Registration Service (NDRS). Please send any feedback or queries to ndrsenquiries@nhs.net 

Please do not include sensitive or patient identifiable information.