Cost of therapy and medicine

Ariel E made this Freedom of Information request to NHS England

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Dear NHS England,

The BBC released an article that claims that the NHS approved gene therapy for people with Spinal muscular atrophy and is the most expensive therapy for the NHS is this true? And could you provide a list of how much it costs per person and a list of the top 15 most expensive drug/therapy which includes cost, the area in England where it is most used, how many people use it, the cost to the NHS, which company produces it and names.

Yours faithfully,

Ariel Eliasov

CONTACTUS, England (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

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Dear NHS England,
I made a FOI request on the 8th of March and I still have not received a response please respond in two days time or I will take it to the ICO

Yours faithfully,

Ariel E

CONTACTUS, England (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

**THIS IS AN AUTOMATED RESPONSE**
 
Dear Customer,
 
Thank you for your email. We are currently receiving a higher than usual
volume of emails so it may take us a little longer to respond directly to
your email. In the meantime, you may find the following information
helpful.
 
Please note: our normal working hours are 08:00 to 18:00 from Monday to
Friday (excluding Bank Holidays). Emails received at the weekend will not
be reviewed until the next working day.
How can the Customer Contact Centre help me?
NHS England commissions or buys primary care services; for example, GPs,
dentists, opticians, and pharmacy services. We are also responsible for
prison healthcare, military health services, and some specialised
services. We can provide advice about accessing, giving feedback or making
a complaint about these services.
You may be able to find the answer you are looking for in our Frequently
Asked Questions<https://www.england.nhs.uk/contact-us/ho...>
and our website explains how to share feedback or make a
complaint.[1]https://www.england.nhs.uk/contact-us/co...
What if I have an enquiry or complaint about hospital care, NHS 111 or
out-of-hours GP services?
If your enquiry or complaint is about secondary care, this includes
hospitals, NHS 111, mental health services, out-of-hours services and
community services such as district nursing, you will need to contact the
organisation that provided the service. All hospitals have a Patient
Advice and Liaison Service (PALS)
[2]https://www.nhs.uk/common-health-questio...
. Alternatively, you can contact your local Clinical Commissioning Group
(CCG). You can find their contact details on the NHS
website[3]https://www.nhs.uk/Service-Search/Clinic...
Does the NHS England Customer Contact Centre provide medical advice?
No. Our advisors are not clinically trained and are unable to provide
medical advice. If you require emergency medical attention, dial 999 or
attend your local Accident and Emergency department if you are able to do
so.
If you require non-urgent medical advice please contact your GP, local
walk-in or urgent healthcare centre, or call NHS 111. Calls are free from
landlines and mobile phones.

How do I report a change of name or address?
You should report a change of name or address to your GP practice so they
can update their records. If your new address is outside the practice’s
catchment area you may be asked to register with a new GP practice.
You should also advise your dentist or optician of a change of name or
address as they keep their own records.

Where can I find further information about NHS England?
You can find information about NHS England and our work on our
website[4]https://www.england.nhs.uk/about/
How do you use my information?
NHS England’s privacy notice explains how we use, share and store your
personal information. You can find this on our
website.[5]https://www.england.nhs.uk/contact-us/pr...
NHS England Customer Contact Centre

show quoted sections

FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

1 Attachment

Dear Ariel Eliasov,  

Thank you for your Freedom of Information (FOI) request dated 8 March
2021.

Your exact request was:

“The BBC released an article that claims that the NHS approved gene
therapy for people with Spinal muscular atrophy and is the most expensive
therapy for the NHS is this true?
And could you provide a list of how much it costs per person and a list of
the top 15 most expensive drug/therapy which includes cost, the area in
England where it is most used, how many people use it, the cost to the
NHS, which company produces it and names”

NHS England holds this information.

NHS England can confirm that onasemnogene abeparvovec (the gene therapy
recently approved by NICE for Spinal Muscular Atrophy) is the most
expensive medicine in relation to a single course of treatment.

Other treatments that may be provided over a number of years may
ultimately cost more but this is difficult to quantify.

To provide a comparative list of costs please find attached a PDF document
with the top 15 most expensive medicines by year of care or course (if
this is less than a year).

Costs are at NHS list price and provide an average cost sourced either
from NICE as quoted in the Highly Specialised Technology recommendation or
from the online British National Formulary. We have also provided the name
of the company who hold the Marketing Authorisation.
 
The decision to commission/fund these medicines is made at a national
level and access to the treatments is universal irrespective of geography.
 
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: [1][NHS England request email]

Please quote the reference number FOI - 2103-1349171 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 following weblink:
 
[2]https://ico.org.uk/global/contact-us/

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
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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, [3][NHS England request email].

Yours sincerely,

Freedom of Information
Communications Team
Office of the Chairs, Chief Executive Officer and Chief Operating Officer

NHS England
PO Box 16738
REDDITCH
B97 9PT

Tel: 0300 311 22 33
Email: [4][NHS England request email]
 

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