Spinal Muscular Atrophy

Rachael Maskell Excerpts

Thursday 25th July 2019 Commons Chamber

[Sir John Hayes]

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 constituent and others like her get what they need so desperately.

[Rachael Maskell (York Central) (Lab/Co-op)]

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 being adopted by Canada around a national rebate scheme, which takes away some of the tension over cost that we seem to return to time and again. Is not that a way forward that the Government should at least explore?

[Sir John Hayes]

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 Government and the new Prime Minister must do as much as they can to ensure that those with rare diseases have every chance possible to live the very best lives they can. So, here is exactly what to do: first, as Spinraza has been shown to be both safe and effective, the NHS should provide the treatment for all those who would benefit from it; secondly, in addition to making Spinraza available for all, the Minister should set up a rare drugs fund, similar to the successful cancer fund, to ensure that those battling debilitating degenerative diseases are supported at every stage of their journey; and thirdly, I ask the Minister to implement an immediate review of the criteria used by NICE to determine access to new medicines.

We all want to do the right thing. I described earlier what I said was a crude approach. These things develop; they metamorphose. This is a chance to look again at how we can administer treatment to have the best effect on those in the greatest need. Hegel said:

“Life has a value only when it has something valuable as its object.”

Chamberlain said:

“In great deeds something abides.”

There is no better great deed, no more noble object, no more abiding purpose than the care for those in the greatest need. I ask this Minister to make her abiding object a war on want, a campaign against suffering, a crusade for those in pain—Madam Deputy Speaker, nothing less will do.