Individual Funding Request for Orkambi (Lumacaftor/Ivacaftor)
Dear NHS England,
Could you please answer the following questions:
Has anyone requested Orkambi (lumacaftor/ivacaftor) for treatment of Cystic Fibrosis via an Individual Funding Request?
How many applications have been made?
Has anyone been successful in their application?
How many people have been successful?
Under what grounds have they claimed for the Individual Funding Request?
Yours faithfully,
Ms McCaffrey
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Dear Ms McCaffrey,
Thank you for your communication dated 5 April 2018.
NHS England has assessed your communication as a request under the Freedom
of Information (FOI) Act 2000. As such, please be assured that your
request is being dealt with under the terms of the FOI Act and will be
answered within twenty working days.
For further information regarding the FOI Act, please refer to the
Information Commissioner’s Office (ICO) website. For further information
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If you have any queries about this request or wish to contact us again,
please email [1][NHS England request email] and the message will be
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Please do not reply to this email. This message has been sent from a
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Information (FOI) requests, enquiries or complaints we ask these are sent
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communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [2][NHS England request email].
Yours sincerely,
Freedom of Information
Corporate Communications Team
Transformation and Corporate Operations Directorate
NHS England
PO Box 16738
REDDITCH
B97 9PT
Tel: 0300 311 22 33
Email: [3][NHS England request email]
‘Health and High quality care for all, now and for future generations’
Dear Ms McCaffrey,
Re: Freedom of Information request (Our Ref: FOI-056118)
Thank you for your Freedom of Information (FOI) request dated 05 April
2018.
Your exact request was:
“Has anyone requested Orkambi (lumacaftor/ivacaftor) for treatment of
Cystic Fibrosis via an Individual Funding Request?
How many applications have been made?
Has anyone been successful in their application?
How many people have been successful?
Under what grounds have they claimed for the Individual Funding Request?”
NHS England holds information in relation to your request.
NHS England has had requests for Orkambi via the mechanism of Individual
Funding requests. However, due to low patient numbers (i.e. fewer than
10), and a subsequent risk of patient identifiability, we are withholding
this information under section 40(2) (personal information) of the FOI
Act, as the information constitutes third party data. Section 40(2)
provides that personal data about third parties is exempt information if
one of the conditions set out in section 40(3) is satisfied.
Under the FOI Act disclosure of this information would breach the fair
processing principle contained in the Data Protection Act (DPA), where it
would be unfair to that person/is confidential. Releasing this information
would breach the data protection protocol as it would be unfair to release
individuals’ details when they did not intend them to be used in such a
way.
Section 40(2) is an absolute exemption and therefore not subject to the
public interest test when considering disclosure of information.
Copyright: NHS England operates under the terms of the open government
licence. Please see the NHS England Terms and conditions on the following
link:
[1]http://www.england.nhs.uk/terms-and-cond...
We hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review. This should be requested in
writing within two months of the date of this letter. Your correspondence
should be labelled “Internal Review” and should outline your concerns
and/or the area(s) you would like the review to consider. Internal Review
requests should be sent to:
NHS England
PO Box 16738
REDDITCH
B97 9PT
Email: [2][NHS England request email]
Please quote the reference number FOI-056118 in any future communications.
If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at:
The Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Telephone: 0303 123 1113
Email: [3][email address]
Website: [4]www.ico.org.uk
Please note there is no charge for making an appeal.
Please be aware that in line with the Information Commissioner’s directive
on the disclosure of information under the FOI Act, your request will be
anonymised and published on our website as part of our disclosure log.
Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows: PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [5][NHS England request email].
Yours sincerely,
Freedom of Information
Corporate Communications Team
Transformation and Corporate Operations Directorate
NHS England
PO Box 16738
REDDITCH
B97 9PT
Tel: 0300 311 22 33
Email: [NHS England request email]
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