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It is concluded that UK access criteria result in a group of HAE patients with persisting unmet need, and greater flexibility in access criteria is recommended, allowing clinical judgement, shared decision-making, and broader measures of disease burden to inform treatment eligibility.
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Hereditary angioedema (HAE) is a rare genetic disorder characterised by recurrent episodes of swelling, which can potentially be life-threatening, resulting in substantial physical, psychological, educational and occupational burden. Treatment of HAE is divided into on-demand treatment for acute attacks and long-term prophylaxis for prevention of attacks, and there are now several effective therapies available. However, in the UK, use of on-demand therapy is intended for attacks defined as clinically significant, and access to long-term prophylaxis is determined primarily by frequency-based criteria. In this policy-focused review, we compare UK access criteria with international guidelines on best practice. We conclude that UK access criteria result in a group of HAE patients with persisting unmet need, and this may have a greater impact in children and young people. In view of this, we recommend greater flexibility in access criteria, allowing clinical judgement, shared decision-making, and broader measures of disease burden to inform treatment eligibility, so we can individualise care and fully meet the needs of these patients.
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@article{Akhoon2026Management,
title = {Management of hereditary angioedema in the UK: a comparison with international guidelines},
author = {Cassim Akhoon and Ariharan Anantharachagan and Emily Carne and Samuel Chee and Joanne Miller and Patrick Yong and Jolanta Bernatoniene and Rachel Annals and Charu Chopra and Tanya Coulter and Sarah Denman and Anthony Dorr and Tariq El-Shanawany and Alexandros Grammatikos and Padmalal Gurugama and Rashmi Jain and Sorena Kiani‐Alikhan and Lucy Leeman and Lorena Lorenzo and Ania Manson and Sadia Noorani and Smita Patel and Arthur Price and Ravi Sargur and Cathal Steele and Catherine Stroud and Stephen Owens and Christine Symons and K C Tan and Michael Tarzi and Scott Hackett and Angela Metcalfe and Sinisa Savic and Tomaz Garcez},
journal = {Clinical & Experimental Immunology},
year = {2026},
doi = {10.1093/cei/uxag056},
url = {https://doi.org/10.1093/cei/uxag056}
}
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