Freedom of Information Request – Ref: FOI 299-2025
Thank you for your recent Freedom of Information request. Please find our response below.
You asked:
1. Please provide Hemophilia A patient numbers broken down by; Age, disease severity and treatment regimen (PPx denotes use for prophylaxis and OD denotes use on demand). If data is not available by age breakdown, then please provide aggregated total in the yellow highlighted columns.
| Brand name (scientific) | 0-12 years | 13+ | ||||||||||
| Mild | Moderate | Severe | Mild | Moderate | Severe | |||||||
| PPx | OD | PPx | OD | PPx | OD | PPx | OD | PPx | OD | PPx | OD | |
| Hemlibra (emicizumab) | ||||||||||||
| Altuvoct (giroctocogene fitelparvovec) | ||||||||||||
| Esperoct (turoctocog alfa pegol) | ||||||||||||
| <Elocta (efmoroctocog alfa) | ||||||||||||
| Advate (octocog alfa) | ||||||||||||
| Kovaltry (octocog alfa) | ||||||||||||
| Iblias (octocog alfa) | ||||||||||||
| Refacto AF (moroctocog alfa) | ||||||||||||
| Xyntha (moroctocog alfa) | ||||||||||||
| NovoEight (turoctocog alfa) | ||||||||||||
| Nuwiq (simoctocog alfa) | ||||||||||||
| Vihuma (simoctocog alfa) | ||||||||||||
2. Inhibitor Patients – for Hemlibra-treated Hemophilia A Inhibitor patients, please indicate the number of patients by age group and dosing frequency for Q3’25 (July to September 2025). If data is not available by age breakdown then please provide aggregated total:
| Age group (Hemophilia A inhibitor patients) | Once weekly | Every 2 weeks | Every 4 weeks |
| 0-12 years | |||
| 13+ years | |||
| Total |
3. Non-Inhibitor Patients – for Hemlibra-treated Hemophilia A Non-Inhibitor patients, please indicate the number of patients by age group and dosing frequency for Q3’25 (July to September 2025). If data is not available by age breakdown then please provide aggregated total:
| Age group (Hemophilia A non-inhibitor patients) | Once weekly | Every 2 weeks | Every 4 weeks |
| 0-12 years | |||
| 13+ years | |||
| Total |
Our response:
The Trust does not treat patients with Hemophilia A. Please re-direct your request to Gloucestershire Hospitals NHS Foundation Trust at ghn-tr.foi@nhs.net.
Next steps:
Should you have any queries in relation to our response, please do not hesitate to contact us. If you are unhappy with the response you have received in relation to your request and wish to ask us to review our response, you should write to:
Louise Moss
Head of Legal Services / Associate Director of Corporate Governance
c/o Gloucestershire Health and Care NHS Foundation Trust
Edward Jenner Court
1010 Pioneer Avenue
Gloucester Business Park
Brockworth, GL3 4AW
E-mail: louise.moss@ghc.nhs.uk
If you are not content with the outcome of any review, you may apply directly to the Information Commissioner’s Office (ICO) for further advice/guidance. Generally, the ICO will not consider your case unless you have exhausted your enquiries with the Trust which should include considering the use of the Trust’s formal complaints procedure. The ICO can be contacted at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.