A global working group comprising patient advocacy representatives, healthcare professionals, and professional organizations identified critical unmet needs in systemic lupus erythematosus (SLE) care. They conducted a literature review to assess the global landscape, existing advocacy efforts, and best practices from other therapy areas. The findings informed the creation of recommendations addressing key issues, including delays in diagnosis, inconsistencies in care, and limited access to approved treatments. These insights culminated in a Patient Charter, outlining the minimum standard of care for individuals with SLE and offering actionable recommendations for improvement.
The initiative aims to improve health outcomes by empowering patients, caregivers, advocacy groups, and healthcare providers to advocate for systemic reforms. By addressing barriers such as delayed diagnosis and limited treatment access, the Patient Charter seeks to unify stakeholders and drive meaningful changes in healthcare practices for people living with SLE globally.
Reference: Mosca M, Andersen J, Wildman P, et al. A charter to improve care for systemic lupus erythematosus. Clin Exp Rheumatol. 2024 Nov 11. doi: 10.55563/clinexprheumatol/my79eu. Epub ahead of print. PMID: 39526503.
