At Theresa May’s penultimate Prime Minister’s Questions earlier today, I raised the case of 18 year old Jake Ogborne, who lives in my constituency, and his fight for access to the drug Spinraza (see my post below for more details). I am pleased that the Prime Minster promised that she will provide an update on this issue before she leaves office next week, and I hope that with cross-party co-operation a positive outcome can be reached as soon as possible.


“Yesterday in Parliament, Jacob Rees-Mogg and I met with the Ogborne family, who live in our constituencies. Jake Ogborne, who is just 18, has a rare neuromuscular disorder called Spinal Muscular Atrophy (SMA). NICE, the organisation responsible for advising NHS England on what treatments to provide to patients, recently gave the green light to make Spinraza – an innovative new drug which has been proven to help people with SMA manage their conditions and prevent them from getting worse – available to SMA patients.

At the time of the announcement, there was no mention of any restrictions on access to the drug. Sadly, and cruelly, Jake has now discovered he does not meet the eligibility criteria, despite the fact that Spinraza would likely be of great benefit to him. I managed to raise this with the Prime Minister at her penultimate Prime Minister’s Questions today and will post about that later.

You can learn more about the Ogborne family’s fight for Spinraza by watching this short but incredibly powerful video:


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