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That this House is aware that the pause in NHS England's decision-making process on prioritisation and specialised commissioning has created a block to accessing effective medicines for rare diseases where there are commissioning policies under development or assessment; notes that for conditions such as Duchenne muscular dystrophy, tuberous sclerosis and Morquio disease, where a cohort of more than five patients exists, there is no alternative viable route to NHS funding; further notes that as a result patients with need of treatment are left at risk of significant harm, including organ failure and avoidable death; also notes that around 180 patients with Duchenne muscular dystrophy, tuberous sclerosis and Morquio disease are currently being denied access; believes it is unethical to place patients at risk as a result of process inefficiencies; and calls on the Government to bring into force, without delay, interim measures to provide children and adults with rare diseases access to vital and proven medicines that will prevent organ deterioration and premature death.
Total number of signatures: 63
Showing 63 out of 63