1-20 of 47 results for subject:Nusinersen
Librarians' tools
- Search time
- 0.201 seconds
- Solr query time
- 0.01 seconds
- Search query
- subject:Nusinersen
- We searched for
- subject_t:Nusinersen OR subject_t:Spinraza OR subject_ses:433483
Type
House
Session
Year
Department
Member
More
Primary member
Answering member
Legislative stage
Legislation
Subject
Publisher
To ask the Secretary of State for Health and Social Care, how many NHS patients have been treated with Spinraza in (a) Lincolnshire and (b) the East Midlands since 2019.
To ask the Secretary of State for Health and Social Care, how many NHS patients have been treated with Spinraza in (a) Lincolnshire and (b) the East Midlands since 2019.
Use of nusinersen, also known by the brand name Spinraza, is commissioned from specialist centres, and in the East Midlands the service is commissioned from Nottingham University Hospital (NUH). NUH has treated eight patients with nusinersen since 2019. No patients were treated in Lincolnshire hospitals, as there is no specialist centre there.
To ask the Secretary of State for Health and Social Care, with reference to his meeting with the hon. Member for Bristol East's constituent Jake Ogborne on access to the drug Spinraza on 23 June, and his response to the hon. Members for Bristol East's question in the House on...
To ask the Secretary of State for Health and Social Care, with reference to his meeting with the hon. Member for Bristol East's constituent Jake Ogborne on access to the drug Spinraza on 23 June, and his response to the hon. Members for Bristol East's question in the House on...
The Secretary of State for Health and Social Care has discussed access to Spinraza with NHS England and NHS Improvement. My Rt hon. Friend has asked them to respond to the hon. Member for Bristol East as soon as possible.
To ask the Secretary of State for Health and Social Care, when NICE plans to undertake its review of evidence on the potential benefits of Spinraza for Type III spinal muscular atrophy patients who are not included in the managed access agreement between NHS England and Biogen.
To ask the Secretary of State for Health and Social Care, when NICE plans to undertake its review of evidence on the potential benefits of Spinraza for Type III spinal muscular atrophy patients who are not included in the managed access agreement between NHS England and Biogen.
The National Institute for Health and Care Excellence (NICE) has committed to reviewing new evidence that becomes available on the benefits of Spinraza for non-ambulant SMA Type 3 patients, during the five-year course of the managed access agreement (MAA).
This review, involving patient groups, clinicians, the company and NHS England and NHS Improvement, will assess whether any new evidence has become available to support a change in the MAA treatment eligibility criteria. NICE and Biogen, the manufacturer of Spinraza, are preparing to initiate this evidence review as intended, once the company has sufficient data to make a submission to NICE.
To ask the Secretary of State for Health and Social Care, how many sufferers of spinal muscular atrophy have not yet received the drug spinraza for which they are eligible following the decision of NICE; and if he will make a statement.
To ask the Secretary of State for Health and Social Care, how many sufferers of spinal muscular atrophy have not yet received the drug spinraza for which they are eligible following the decision of NICE; and if he will make a statement.
As at June 2020, the number of patients receiving Spinraza for the treatment of spinal muscular atrophy treatment is 162. NHS England and NHS Improvement do not hold information on the number of eligible patients who have not yet received the drug Spinraza.
The National Institute for Health and Social Care and NHS England and NHS Improvement took advice from clinical experts and reviewed the potential impact of COVID-19 on the delivery of Spinraza. As a result, there may be a delay for adult patients who have not yet been assessed. Access to treatment will resume once the current restrictions and limitations associated with the COVID-19 pandemic are lifted.
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the appropriateness of the NICE criteria for assessing a patient's access to Spinraza.
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the appropriateness of the NICE criteria for assessing a patient's access to Spinraza.
It has not proved possible to respond to the hon. Member in the time available before Prorogation.
There is no fairness to fate, no right to good fortune: new life is a miracle, and great health is a blessing.
I do not normally speak from a text, as you know, Madam Deputy Speaker, having known me since we both entered the House in 1997, but the subject which...
There is no fairness to fate, no right to good fortune: new life is a miracle, and great health is a blessing.
I do not normally speak from a text, as you know, Madam Deputy Speaker, having known me since we both entered the House in 1997, but the subject which...
It is just so cruel. There was a party to celebrate the fact that my 18-year-old constituent Jake Ogborne would have access to Spinraza. There was no mention of eligibility criteria, but suddenly he was told that he would not be eligible because he had not been able to walk...
It is just so cruel. There was a party to celebrate the fact that my 18-year-old constituent Jake Ogborne would have access to Spinraza. There was no mention of eligibility criteria, but suddenly he was told that he would not be eligible because he had not been able to walk...
Yes. The condition, as the hon. Lady suggests, is often degenerative. In cases such as the one she describes, which, as I mentioned, is not the first time she has raised it, a young person who would normally develop as we all did could be left with arrested development or,...
Yes. The condition, as the hon. Lady suggests, is often degenerative. In cases such as the one she describes, which, as I mentioned, is not the first time she has raised it, a young person who would normally develop as we all did could be left with arrested development or,...
I congratulate the right hon. Gentleman on securing this important debate. I, too, have a young constituent, Sam McKie, who has SMA type 2. I hope the right hon. Gentleman agrees that the issue is that, whatever has happened so far, we need to know that NICE will look at...
I congratulate the right hon. Gentleman on securing this important debate. I, too, have a young constituent, Sam McKie, who has SMA type 2. I hope the right hon. Gentleman agrees that the issue is that, whatever has happened so far, we need to know that NICE will look at...
Exactly. That is why, in the exciting conclusion to this speech, I shall make demanding suggestions. I think they are demanding because of the demands of those who need this drug, not because of any particular interest I might have in this matter beyond a passion to ensure that my...
Exactly. That is why, in the exciting conclusion to this speech, I shall make demanding suggestions. I think they are demanding because of the demands of those who need this drug, not because of any particular interest I might have in this matter beyond a passion to ensure that my...
I am grateful to the right hon. Gentleman for introducing today’s debate. We have had many debates in the House
on the procurement of drugs. I have been working with health economists at the University of York who are leading in this field. They very much recommend the model now...
I am grateful to the right hon. Gentleman for introducing today’s debate. We have had many debates in the House
on the procurement of drugs. I have been working with health economists at the University of York who are leading in this field. They very much recommend the model now...
The hon. Lady had the great pleasure of shadowing me when I was at the Department for Transport, and I have had the greater pleasure of listening to her on so many subjects. She speaks with such knowledge, understanding and wisdom. Once again, she has shown all those things today.
The...
The hon. Lady had the great pleasure of shadowing me when I was at the Department for Transport, and I have had the greater pleasure of listening to her on so many subjects. She speaks with such knowledge, understanding and wisdom. Once again, she has shown all those things today.
The...
What a pleasure it is to speak in the final parliamentary debate of what has been an historic and tumultuous term for all of us.
I congratulate my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) on securing the debate on such a timely day,...
What a pleasure it is to speak in the final parliamentary debate of what has been an historic and tumultuous term for all of us.
I congratulate my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) on securing the debate on such a timely day,...
The Minister makes a good point about the managed access agreement and the amendments to it that she described. But the real issue here is whether Spinraza would benefit every single sufferer. If it would, it should be universally available.
The Minister makes a good point about the managed access agreement and the amendments to it that she described. But the real issue here is whether Spinraza would benefit every single sufferer. If it would, it should be universally available.
I know that there is an issue with some people suffering from SMA type 3, but I am not the person who would make the decision on whether Spinraza was effective or not; that is why NICE is there.
Children with the most severe form of SMA type 1 are already...
I know that there is an issue with some people suffering from SMA type 3, but I am not the person who would make the decision on whether Spinraza was effective or not; that is why NICE is there.
Children with the most severe form of SMA type 1 are already...
Has the Department given any consideration to the MAP BioPharma report released earlier this year, which looked at how the appraisal process could make a fairer playing field for rare diseases?
Has the Department given any consideration to the MAP BioPharma report released earlier this year, which looked at how the appraisal process could make a fairer playing field for rare diseases?
Yes, the Department has looked at that report. NICE recently initiated a review, and I assure Members—as I did when I answered the urgent question on Tuesday—that it will be wide-ranging and carried out with extensive engagement with stakeholders. I shall be keeping a close eye on it if I...
Yes, the Department has looked at that report. NICE recently initiated a review, and I assure Members—as I did when I answered the urgent question on Tuesday—that it will be wide-ranging and carried out with extensive engagement with stakeholders. I shall be keeping a close eye on it if I...
Agreed to on question.
Agreed to on question.
It is an honour to follow the hon. Member for Congleton (Fiona Bruce), who, through her care, compassion and faith, does so much good work in this place.
I speak first as the co-chair of the drugs, alcohol and justice cross-party group and as a member of the all-party group on...
It is an honour to follow the hon. Member for Congleton (Fiona Bruce), who, through her care, compassion and faith, does so much good work in this place.
I speak first as the co-chair of the drugs, alcohol and justice cross-party group and as a member of the all-party group on...
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 8 July 2019 to Question 369611 on Spinal Muscular Atrophy (SMA), what the evidential basis is that Spinraza does not work effectively on people with SMA that are excluded from access to that drug...
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 8 July 2019 to Question 369611 on Spinal Muscular Atrophy (SMA), what the evidential basis is that Spinraza does not work effectively on people with SMA that are excluded from access to that drug...
The National Institute for Health and Care Excellence (NICE) is currently developing recommendations for the National Health Service on the use of Spinraza for the treatment of spinal muscular atrophy (SMA) through its technology appraisal programme. NICE recommends technologies for use in the NHS when the evidence demonstrates that they are clinically effective and represent a cost-effective use of NHS resources.
There are several subtypes of SMA and, in the case of Spinraza, NICE has advised that it was not presented with evidence in SMA type 0 and SMA type 4. Evidence presented for the SMA type 3 population, who had lost the ability to walk, was limited and immature and resulted in its independent Appraisal Committee concluding that the size and nature of the benefits of Spinraza for this population were uncertain. Therefore, they were not included in the managed access arrangement (MAA) agreed by NHS England and Biogen.
Following publication of the initial MAA, the company presented further clinical evidence and the MAA was extended to include paediatric patients, who have recently (in the previous 12 months) lost the ability to walk independently.
Uniquely for this type of arrangement, during the five-year course of the MAA, should evidence become available on the potential benefits of Spinraza for type 3 SMA patients that are currently not included in the MAA, NICE will review that evidence to see whether it would support a change in the MAA inclusion criteria.