Oral Answers to Questions

Jacob Rees-Mogg Excerpts

Tuesday 18th June 2019 Commons Chamber

[Mr Jacob Rees-Mogg (North East Somerset) (Con)]

My constituent Max is aged eight and has Batten disease. He is one of only two sufferers of this disease who are not receiving the medicine that can improve their quality of life and keep them alive. Eleven other children in this country with Batten disease are receiving the drug, which is very effective but very expensive. The drug manufacturer has offered six months’ free supply to Max and the other person not getting it and has made other proposals to NHS England, which is currently refusing even to have meetings with the drug company to discuss how my constituent, this dying child, may receive the drugs he needs. Will my right hon. Friend intervene and use whatever reserve powers he has to ensure that my constituent gets this life-saving drug?

[Matt Hancock]

My hon. Friend speaks for the whole House about the need for these rare diseases to be given the attention they need so that sufferers such as Max can get the medicines if at all possible. As he knows following our meeting, the formal legal responsibilities lie with NHS England and NICE. I have raised this case, and that of others mentioned earlier, with the chief executive of NHS England and will raise it once again following this Question Time. We will do all we can to resolve this.