Released 26 April 2023
Request:
I am researching the incidence and treatment of Haemophilia A across the UK. I would greatly appreciate if you could answer to the following questions.
Q1. How many haemophilia A patients are registered with your centre, and how many of these patients are classified as exhibiting mild, moderate, or severe disease.
Q2. In the last three months, how many Haemophilia A patients, including on-demand patients, have been treated with the following products?
- Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra (standalone)
• Hemlibra in combination with any Factor VIII
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF
• Any other products
Information disclosed:
In respect of question 1, 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.
Further to the above, 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.
In respect of question 2, the UKHCDO (UK Haemophilia Centre Doctors Organisation) has advised the Trust that they feel this data is ‘commercially sensitive’; disclosure of this information into the public domain could be used to influence the medicines market. More specifically, the disclosure of this information would prejudice the commercial interests of those companies that have established trade and confidentiality agreements with the Commercial Medicines Unit, as well as the commercial interests of NHS England which secures and maintains the most cost effective drug provisions for the NHS.
Section 43(2) [commercial interests] exemption of the FOIA is applicable.
As referenced above, the UKHCDO produces accessible statistical information and annual reports on this subject, and Section 21 exemption under the FOIA is therefore applicable.