Access to Eculizumab

Debate between Keith Vaz and Nick Harvey

Tuesday 14th May 2013 Commons Chamber

Sir Nick Harvey (North Devon) (LD)

- Hansard - - Excerpts

I rise to present a petition on behalf of the sufferers of atypical haemolytic uraemic syndrome, known as aHUS, a rare disease that causes irreversible kidney failure. Until recently there was no effective treatment for this condition, which has 139 known patients in England, of whom 20 live in Devon. I am presenting the petition to press for aHUS sufferers’ access to Eculizumab, a new drug that has been proven to cause a dramatic improvement in kidney function and, indeed, in the quality of life of patients diagnosed with aHUS. The petition has received almost 30,000 signatures nationally and is presented on behalf of the national group, aHUS Action. It was brought to me by one of my constituents, Elena Lilley, who suffers from aHUS. She received Eculizumab as part of a clinical trial three years ago and it has transformed her life, avoiding the need for her to be put back on dialysis and enabling her to resume a full-time job.

The Advisory Group for National Specialised Services has recommended that Eculizumab should be nationally commissioned by the NHS, emphasising its life-saving potential and ability to improve the quality of life of all aHUS patients. However, earlier this year health Ministers decided to refer Eculizumab to the National Institute for Health and Clinical Excellence for a further review of its affordability. Some patients have already been waiting over 18 months for a decision, and an announcement is not expected until December. The petition urges that action should be taken to ensure that all aHUS patients, including those already on the drug, should be given access to Eculizumab without delay pending the outcome of NICE’s review.

Following is the full text of the petition:

[The Petition of Miss K Bazzichi and Miss E Woodward Trustee Officers of aHUSUK,

Declares that aHUS patients should be given access to Eculizumab when they need it, without delay, and not be disadvantaged by the Ministers' decision not to implement the AGNSS recommendation ahead of a review by NICE.

The Petitioners therefore request that the House of Commons issues instructions to the NHS CB to take such action, whilst waiting for NICE's decision.

And the Petitioners remain, etc.]

[P001176]

Keith Vaz (Leicester East) (Lab)

- Hansard -

It is a pleasure to follow the hon. Member for North Devon (Sir Nick Harvey). The 500 signatures on my petition should be added to the 30,000 signatures on his. I was approached by my constituent, Trevor Murby, of Abbots Road, Leicester, because his grandson, Finley Murby, was having great difficulty in accessing this drug. As a result of the work of Trevor Murby and so many other people involved in the campaign, he was able to get the drugs that he needed. I concur with the hon. Gentleman that it is really important that everyone who needs this drug has access to it and that action is taken immediately to help those who are disadvantaged.

Following is the full text of the petition:

[The Petition of Mr T Murby and Mr Finley Murby Trustee Officers of aHUSUK,

Declares that aHUS patients should be given access to Eculizumab when they need it, without delay, and not be disadvantaged by the Ministers’ decision not to implement the AGNSS recommendation ahead of a review by NICE.

The Petitioners therefore request that the House of Commons issues instructions to the NHS CB to take such action, whilst waiting for NICE's decision.

And the Petitioners remain, etc.]

[P001177]

Afghanistan (Civilian Killings)

Debate between Keith Vaz and Nick Harvey

Monday 12th March 2012 Commons Chamber

[Keith Vaz (Leicester East) (Lab)]

The whole House is shocked by this terrible event, as are members of the British Afghani community, thousands of whom have settled in my Leicester constituency. This is the slaughter of the innocents. I understand that the father and son of this family survived these atrocities. In our discussions with the Americans over the next few days, we should urge on them the importance of supporting those who remain and the community they come from. I know there is going to be an investigation, but before that happens we need to do something to help this local community.

[Nick Harvey]

The right hon. Gentleman makes a very good point—that the sense of grief that will grip communities in Kandahar will, of course, be felt by the diaspora of Afghan and Pashtun people, not least here in the UK. He is absolutely right that there is no need to await an investigation of exactly what happened before we begin to repair relations with those communities as far as we possibly can and to offer every possible support to the families and those grieving in the wake of this appalling incident. It is certainly the case that we will urge our allies to crack on and do that.

Oral Answers to Questions

Debate between Keith Vaz and Nick Harvey

Monday 4th July 2011 Commons Chamber

[Nick Harvey]

Again, that is predominantly a question of foreign policy, but clearly the foreign policy circumstances are very different in the two countries. In the case of Libya, a regional power invited an intervention and a UN Security Council resolution authorised all necessary force. In the case of Syria, no regional body is inviting an intervention; more to the point, as yet, there has been no progress on a UN resolution, although the UK has a draft before the UN.

[Keith Vaz (Leicester East) (Lab)]

As the Minister knows, the situation in Yemen is now critical. Have the Government received any request from the acting President of Yemen for military assistance by way of advisers or any other assistance whatever?

[Nick Harvey]

I can confirm that we have received no such requests.