Thursday, 25 November 2010
I rise today to bring to the Main Committee’s attention a rare and debilitating autosomal recessive metabolic disorder that affects many Australians, including constituents of mine in the Riverina. Pompe’s disease is an issue which the parliament and, more particularly, the government need to address. Recently I met with two members of the Australian Pompe’s Association, Brad Gibson and Raymond Saich. Raymond watched as his own brother was taken by the disease that he himself was later diagnosed with. Brad was also diagnosed with Pompe’s disease this year. The lives of these gentlemen have been adversely affected by Pompe’s disease, and they are now facing what they describe as a ‘fairly bleak’ Christmas season.
While I respect the independence of the Pharmaceutical Benefits Advisory Committee, the PBAC, I call upon the it to rigorously investigate the potential benefits of drugs including Myozyme that are available to treat Pompe’s disease and the debilitating condition that many people, including my constituent Gloria Halliwell, of Wagga Wagga, are left dealing with every day. Gloria Halliwell is in a nursing home with her mother. She is wheelchair bound and being fed by a tube due to the muscular degeneration in her throat. Pompe’s disease is a punishing disease that requires the real consideration of the PBAC. It is heartbreaking to see people such as Gloria suffering with a condition of this nature.
Should Myozyme receive a positive recommendation from the PBAC, I call upon the government to expedite the listing of the drug so that the people who have been diagnosed with Pompe’s disease can start to lead a better life. Myozyme is available in 40 other countries, and there are many people in a condition similar to Gloria’s who are receiving the treatment they need for this disease. I believe that the existence of this drug and the plight of the people living with Pompe’s disease have been brought to the attention of the Minister for Health and Ageing, and I hope that the minister does not adopt the present position of the government when it comes to calling upon the PBAC to properly consider the possible benefit of drugs of this nature and place it on the necessary register.