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Pompe Disease

Pompe Disease - Pompe disease sufferer Brad Gibson should hear today whether the Pharmaceutical Benefits Advisory Committee has approved funding for the treatment he believes would save his life.

The committee has spent the past six weeks considering a fourth application for the government funding of the expensive drug, Myozyme, approved in 44 countries around the world as it has shown to have remarkable results.

Despite receiving a brush-off from Health Minister Nicola Roxon a few weeks ago, Mr Gibson was still hopeful of a positive result.

“I don't know what we will do if they knock it back,” he said.

Pompe Disease

“But even if they do approve, we then have to wait for the government to decide when it will make funding available for it.”

Canadian Pompe disease “survivor” Brad Crittenden has written to Ms Roxon and Prime Minister Julia Gillard questioning how they could deny sufferers like Mr Gibson subsidised treatment.

Mr Crittenden has been receiving Myozyme since May and said he had been given his life back.

Pompe Disease
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