Jake Ogborne and TreatSMA visited the Houses of Parliament to meet with Jacob Rees-Mogg to highlight his and others’ need for treatment.
Jake and TreatSMA took the campaign to the Houses of Parliament on the 16th July to stress the need for access to Spinraza. Already Jake is seeing deterioration which access to Spinraza would stop. His MPs were upset that he could have walked at the time of the approval for marketing Spinraza, yet the MAA process has taken so long he does not now meet the MAA criteria. Jacob Rees-Mogg was surprised that in the original NICE announcement on the 15th May it looked like treatment should have been available but now he cannot access it. Jake’s family are desperate to access treatment for him but no matter how hard they try they are blocked
Jake Ogborne, who is 18 and comes from East Bristol, took the campaign for allowing all patients to receive Spinraza to the Houses of Parliament in order to provide MPs with real-life information on the impact of being excluded from treatment.
Jake’s grandmother’s MP Jacob Rees-Mogg has taken special interest in this case after receiving a letter from Jake’s family, the letter prompted Mr Rees-Mogg to challenge the Prime Minister on the behaviour and poor communications from NICE, asking that they should be compelled to stick with their original announcement of allowing access for all.
Jake explained that he was able to walk in 2017 as a type 3 sufferer when Spinraza received its marketing authority in Europe, however due to the protracted process for approval, and the U-turn with regards to the eligibility criteria in the MAA, he now doesn’t meet the criteria to receive treatment. Both Jake’s MP Kerry McCarthy and Jacob Rees-Mogg MP committed to do all that they can to support Jake’s ongoing fight to receive treatment, which despite many attempts by Jake’s family, is blocked at every attempt.