Released 3 May 2023
Request:
1. How many patients has your Trust treated (for any medical condition) in the past 3 months with the following drugs:
- Alphanate
- Alprolix
- BeneFIX
- HaemateP
- Idelvion
- Nuwiq
- Refixia
- Rixubis
- Veyvondi
- Voncento
- Wilate
- Willfac
2. How many patients have been treated in the past 3 months with:
- Gene therapy for Haemophilia B ONLY
- Desmopressin for Von Willebrand Disease ONLY
- Tranexamic Acid for Von Willebrand Disease ONLY
3. Of the patients that were treated with Veyvondi in the past 3 months, how many patients received treatment:
- During surgery
- On demand to treat bleeding episodes
4. How many patients are registered with your trust for the following diseases:
- Haemophilia B
- Von Willebrand Disease
- Von Willebrand Disease – paediatric patients (age 17 or under)
Information disclosed:
Question 1. The Trust has treated 0 (nil) patients with any of these medications in the past three months.
Question 2. The total number of patients relevant to your request is so small that the Trust considers the disclosure of the specific information you are seeking to be exempt under section 40(2) [personal information] exemption on the grounds that it amounts to personal data and the first condition under section 40(3)(a) is satisfied, namely, that disclosure would be in breach of one of the data protection principles as outlined in the UK General Data Protection Regulations (GDPR).
The engagement of s.40(2) in this case is considered absolute and is not subject to public interest considerations.
Question 3. Not applicable
Question 4. The United Kingdom Haemophilia Centre Doctors’ Organization (UKHCDO) produces statistical information and annual reports which contain the number of patients per treatment centre, the numbers of patients on regular (prophylaxis) treatment, and the market share of different products across the UK. This information can be found on their website.
Since this information is reasonably accessible via other means, section 21 exemption under the Act is applicable.