Jon Trickett

Hemsworth Labour

Rare Diseases Debate

On Tuesday I spoke out in Parliament during a debate about the availability of medicines for those suffering from rare diseases. The Grandmother of Sam Brown lives in my area. Sam is a young boy who suffers from Morquio syndrome an incredibly rare disease which affects the way his skeleton grows. He has been taking the drug Vimizim, the only drug for his condition, which has been funded so far by the pharmaceutical manufacturer but the National Institute for Health and Clinical Excellence (NICE) say it is expensive and its benefits have been overestimated.

During the debate I argued that NICE have stated that the drug is ‘likely to provide valuable clinical benefits for certain aspects of the condition’. Even if the drug does not completely stop the disease’s progression, how can NICE axe this wonderful boy’s medicine that has seen him grow stronger from its benefits?

To watch the debate, please click on the link below.

http://parliamentlive.tv/event/index/f14c7cfb-271e-43cb-92b8-a10789739c1c

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