Batten Disease: Access to Drugs

Jim Cunningham Excerpts

Tuesday 16th July 2019 Commons Chamber

[Caroline Dinenage]

Thank you for clarifying that, Mr Speaker. I very much share the passion that I detect my hon. Friend the Member for North East Somerset feels about this issue, which I know is shared by Members on both sides of the House.

[Mr Jim Cunningham (Coventry South) (Lab)]

On the basis of what Mr Speaker has said, surely if those who are taking this issue to the courts withdrew their challenge, or if the Minister gave them a satisfactory answer to help the hon. Member for North East Somerset (Mr Rees-Mogg), it would not be sub judice. The Minister has the power to do that.

[Caroline Dinenage]

I am very tempted to do so, but I would like to try to make progress on some of the things I can say, and then we can maybe move on to a more satisfactory conclusion.

--- Later in debate ---

[Caroline Dinenage]

Thank you, Mr Speaker.

The legal position, as I understand it, is that NHS England and NHS Improvement have been in discussions with the manufacturer BioMarin for some time to try to seek a deal that would enable NICE to recommend the drug for use on the NHS, but so far an agreement has unfortunately not been possible. As hon. Members know, and as I said at the beginning of my speech, NICE’s assessment is currently subject to an ongoing legal procedure. NICE has published its draft recommendation and was unfortunately unable to recommend the use of the drug, despite its meeting the criteria for consideration under the highest cost-effectiveness threshold. NICE has not yet re-published its final word on this issue, and that may provide more clarity. In the meantime, it is of course open to the company to enter into an agreement with NHS England that would make the drug cost-effective and would make the legal procedure unnecessary.

[Mr Jim Cunningham]

If NHS England got a satisfactory agreement with the drug manufacturer, would that have any bearing on the decision of the Secretary of State or on NICE?

[Caroline Dinenage]

I do not think it would contravene any legal recommendations if I were to say that if the manufacturer, NHS England and NICE were to get around a table and agree a satisfactory price, there would be no need for the legal challenge. In actual fact, the desperately poorly children we have heard about today would therefore be able to get the treatments that they desperately need.

--- Later in debate ---

[Caroline Dinenage]

I completely understand what the hon. Lady says, and I completely agree with her. I would love to be able to solve this problem straightaway and give these children the lifeline they need. Unfortunately, that is not the case today. I have committed to make a statement before the House finishes for recess at the end of next week, so I will come back shortly with all the information I am allowed to give. I really do not want her to think that this in any way suggests that I do not understand how the families must be feeling. I can only begin to imagine how desperate it must be to have such a poorly child.

[Mr Jim Cunningham]

I do not want to be difficult for the Minister, because she is doing a very difficult job, but could she clarify something? I got the impression from something she said a minute or two back that if NICE and NHS England concluded negotiations and agreed a price with the drug manufacturer, that would be acceptable to the Government.

[Caroline Dinenage]

My understanding is that if the manufacturer of this vital drug gets around the table with NICE and suggests a price within a reasonable scale, NICE would be very open to listening. That is my understanding. Certainly, I understand calls from Members across the House for NHS England, NICE and the manufacturer to get around the table to try to find a solution. That seems to me to be the most sensible way forward.