Released 12 July 2024
Request:
1. In the last 3 months (April, May, June 2024), how many haemophilia A and B patients were treated with the following coagulation factors in your trust and how much volume (IUs) was used?
- Hemlibra (non-inhibitor patients)
- Hemlibra (inhibitor patients)
- Advate
- Adynovi
- Elocta
- Esperoct
- NovoEight
- ReFacto AF
- Nuwiq
- Idelvion
- Refixia
- Alprolix
- BeneFIX
- Replenine
- Rixubi
2. In the last 3 months (April, May, June 2024), how many von Willebrand patients were treated in your trust with the following coagulation factors for the following regimen and how much volume (IUs) was used:
a. Voncento
- Prophylaxis
- Intermittent prophylaxis
- Surgeries
- Treatment of bleeds
b. Veyvondi
- Prophylaxis
- Intermittent prophylaxis
- Surgeries
- Treatment of bleeds
c. Wilate
- Prophylaxis
- Intermittent prophylaxis
- Surgeries
- Treatment of bleeds
d. Willfact
- Prophylaxis
- Intermittent prophylaxis
- Surgeries
- Treatment of bleeds
Information disclosed:
Under Section 1(1)(a) of the Freedom of Information Act (FOIA) the Trust can confirm that it holds information relevant to your request, however, we are unable to disclose it at this time for the reasons explained below.
Please note that the information provided to you in respect of your previous request upon this subject (FOI24002] is still valid in reference to these conditions.
The UK Haemophilia Centre Doctors Organisation (UKHCDO) has advised the Trust that they consider data regarding the drugs used for the treatment of Haemophilia/Von Willebrand’s disease to be ‘commercially sensitive’ and the 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) of the FOIA states that information is exempt if its disclosure would or would be likely to prejudice the commercial interests of any person or company holding it. According to ICO guidance, a ‘commercial interest’ is defined as follows “…a commercial interest relates to a person’s ability to participate competitively in a commercial activity, i.e. the purchase and sale of goods or services.” This information is therefore exempt from disclosure under section 43(2) [commercial interests] exemption of the FOIA.
Section 43 is a qualified exemption, therefore the public interest in withholding the information should outweigh the public interest in its disclosure. The Trust has carried out the requisite public interest test and while disclosure of this information would provide additional transparency about the use of these products, it is not outweighed by the commercial prejudice which disclosure will likely cause to the Commercial Medicines Unit, NHS England and their suppliers. It is the Trust’s view that disclosure of this information would negatively impact on the ability of these organisations to secure, maintain and protect trade agreements that benefit both patients and taxpayers. Additionally, such disclosure would undermine the trading position and business aims of these organisations as well as compromise their ability to negotiate the most cost-effective healthcare services. For these reasons, the Trust has decided that it is in the public interest to withhold this information at this time.
Moreover, the Trust has a duty to safeguard the confidentiality of its patients under Data Protection legislation. 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. Since you have requested this information under the terms of the FOI Act we are obligated to consider the legitimacy of disclosure to the world at large which allows unrestricted access to this data, free from any obligation of confidence. The Trust therefore considers the disclosure of the specific information you are requesting 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)(i) is satisfied, namely, that disclosure would be in breach of the first data principle of the UK General Data Protection Regulations (GDPR) and Data Protection Act 2018, which outlines the requirement that personal data is processed ‘fairly’. It is our view that the patients relevant to your request would have a reasonable expectation that this information would not be disclosed into the public domain in this way, and that disclosure would likely cause undue distress and not be considered ‘fair’ by the individuals involved. The engagement of s.40(2) in this case is considered absolute and is not subject to further public interest considerations.
You might be interested to know that the 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.