Drug company Genzyme will no longer provide drugs to prolong the lives of 14 patients suffering from the deadly and extremely rare Pompe disease when its $600,000 annual charity funding ceases later this year.
Only a government subsidy would enable Genzyme to continue supplying Myozyme free of charge to the patients.
The federal government refuses to subsidise Myozyme for children and adults under its life-saving drugs program on grounds that there is no evidence the drug could save lives. However, the federal government funds the medicine for babies born with the disease because they will die within 12 to 14 months without the enzyme.
Genzyme has spent $36 million supplying the drug for free the past three years. News.com.au quoted managing director Dan Brown as saying it could no longer sustain the charitable funding beyond this year.
Myozyme replaces the missing enzyme in the body that breaks down glucose and prevents patients with Pompe disease from suffering cardiac and respiratory failure due to accumulated fats in muscles. The drug is infused on patients every two weeks.