Life saving drug rejected for Wagga woman

The federal government has rejected a bid to subsidise a costly drug which could save the life of Wagga woman Gloria Haliwell.Ms Haliwell suffers from Pompe disease, a rare degenerative muscle disease which affects only 20 Australians.There is only one drug, Myozyme, to treat the disease but it costs about $500,000 a year.The government's Pharmaceutical Benefits Advisory Committee (PBAC) this week rejected a submission to have Myozyme subsidised under the Life Saving Drugs Program.It is the fourth rejected submission by US-based company Genzyme, which manufactures the drug.Genzyme began an access scheme in 2004 to provide the drug for free to 16 patients as a stop-gap solution before government subsidy began.Six years later it has spent more than $46 million on the scheme and may be on the verge of pulling the plug."It was never anticipated or considered viable to be a long-term solution," a Genzyme spokesman said. Ms Haliwell was diagnosed with the illness when she was 40 years old but has been taking Myozyme for only three years. Now 66, she said the drug made a significant difference to her wellbeing and has criticised the government's inaction. "I couldn't believe (PBAC) rejected the submission," she said."I'm not concerned about myself; it's the young ones coming up with it. If they had access to (Myozyme) they could live a long life."The PBAC rejected the submission on the basis there wasn't enough evidence to show Myozyme saves lives. However, it accepted that the treatment stops deterioration of respiratory function, which can lead to death.The Australian Pompe Association (APA) has attacked the federal government and cited more than 40 other countries which currently subsidise the drug."It seems that our government doesn't place the same value on a human life as other countries do and is condemning us to a slow and painful death," APA president Helen Walker said.