Geoffrey Clifton-Brown: DHSC: All Documents

Written Question

Tofersen

Monday 19th January 2026

Asked by: Geoffrey Clifton-Brown (Conservative - North Cotswolds)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many people diagnosed with SOD 1 MND are currently unable to access tofersen.

Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)

Companies may put in place Early Access Programmes (EAPs) to allow early access to new medicines which have been licensed by the Medicines and Healthcare Products Regulatory Agency, but which do not yet have National Institute for Health and Care Excellence guidance. Participation in such programmes is decided at an individual National Health Service trust level. The manufacturer of tofersen, Biogen, has established an EAP for people diagnosed with SOD1 amyotrophic lateral sclerosis who meet the inclusion and exclusion criteria set out by the company.

Under EAPs, the cost of the drug is free both to patients taking part in it and to the NHS, although NHS trusts must still cover the costs of administering the medicine. NHS England does not therefore have any involvement in directing EAP enrolment by trusts and the Department has no plans to issue any national direction to trusts to participate in such programmes.

Many NHS hospitals have been able to identify the extra staff and resources needed to take part in the EAP and safely provide tofersen to as many eligible patients as possible. Neither NHS England nor the Department holds any data on the number of NHS trusts or patients accessing tofersen through the company led EAP.

Written Question

Tofersen

Monday 19th January 2026

Asked by: Geoffrey Clifton-Brown (Conservative - North Cotswolds)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps the Government is taking to help ensure tofersen can be administered to MND patients under the early access programme.

Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)

Speech in Commons Chamber - Thu 27 Oct 2022
Contact in Care Settings

"On a point of order, Mr Deputy Speaker. I made a speech in the previous debate on the national food strategy and food security and I inadvertently forgot to declare my interest in the Register of Members’ Financial Interests as a farmer and a Fellow of the Royal Institution of …..."
Geoffrey Clifton-Brown - View Speech

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Speech in Commons Chamber - Wed 08 Dec 2021
Dignity in Dying

"How would my right hon. Friend’s Bill prevent relatives or others from putting pressure on the person to ask for this procedure to be put in place?..."
Geoffrey Clifton-Brown - View Speech

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Speech in Commons Chamber - Mon 13 Sep 2021
Covid-19 Vaccinations: 12 to 15-year-olds

"I have great respect for my hon. Friend as the vaccines Minister, but I find what he has announced this evening deeply troubling. I think it will pit parents against parents and parents against teachers, with a poor child stuck in the middle wondering what to do. There will be …..."
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Speech in Commons Chamber - Mon 14 Jun 2021
Covid-19 Update

"Mr Speaker, this is an unexpected surprise, and I am sure it is for the Secretary of State as well. I am sure that he will be interested in my question. Ultimately, these decisions are a matter of judgment. Can he publish that data on the risk to the health …..."
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Speech in Commons Chamber - Thu 04 Feb 2021
Covid-19 Vaccine Update

"I am sure my hon. Friend would like to join me in paying huge tribute to the NHS colleagues and volunteers who have rolled out the vaccine with such speed in Gloucestershire. However, is he able to tell the House whether there will be any clarity about when the nine …..."
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Speech in Commons Chamber - Tue 12 Jan 2021
Covid-19

"There was a time when I did not think that I was going to get on, but I am back, so thank you, Mr Deputy Speaker.

The first vaccine dose has now been supplied to more than 2.2 million people. That is larger than the whole of the rest of …..."
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Speech in Commons Chamber - Mon 19 Oct 2020
Covid-19 Update

"I wholly applaud my right hon. Friend’s approach of localised lockdowns, but does he agree that in an area such as Gloucestershire, where, mercifully, the number of cases is still relatively low, the tracking and tracing and advice on self-isolating could be improved by involving both national and local resources?..."
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Speech in Commons Chamber - Mon 16 Mar 2020
Covid-19

"The Secretary of State’s announcement today will mean that large numbers of elderly and vulnerable people will be required to self-isolate. Will the Government therefore co-ordinate all the volunteering organisations because large numbers of people will be required to deliver necessities to those vulnerable groups?..."
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