Alex Somlyay (Fairfax, Liberal Party) Share this | Link to this | Hansard source

I present two petitions on behalf of my constituent Bradley Gibson, who suffers from Pompe’s disease and is requesting that the life-saving drug Myozyme be made available under government funding to all Australian sufferers of this extremely rare, inherited and often fatal disorder which affects the muscles.

The petition read as follows—

To the Honourable the Speaker and Members of the House of Representatives

This petition signed by the Australian Community on behalf of Australian Citizens diagnosed with Pompe’s Disease draws to the attention of the Members of the House of Representatives that:

- The life saving drug Myozyme which is funded by Governments to treat Pompe’s disease in over 44 countries throughout the world has not been accepted onto the Australian Government’s Life Saving Drugs Program for Juvenile and Adult onset Pompe Disease sufferers. This is despite evidence showing the drugs success in halting disease progression, prolonging and improving quality of life in Juvenile and Adult onset Pompe patients.

The high cost of Myozyme is out of reach of the average Pompe disease sufferer. The drug is currently funded by the Australian LSDP for infants only. Withholding access to this drug for Adult and Juvenile Pompe sufferers means confinement to a wheelchair and the need for permanent ventilatory support. Untreated Pompe patients require high cost medical care and die prematurely due to respiratory failure.

We therefore ask the Members of the House of Representatives to:

1.

Recognize Myozyme as a life saving drug in the treatment of Adult and Juvenile onset Pompe’s disease

2.

Pass appropriate legislation to place Myozyme on the Australian Governments Life Saving Drugs Program

3.

Allocate sufficient funding to ensure Myozyme is made available to all Australian Citizens diagnosed with Pompe’s disease to bring the care offered in Australia in line with accepted International Practice.

from 712 citizens

Petition received.

The petition read as follows—

To the Honourable the Speaker and Members of the House of Representatives

This petition signed by the Australian Community on behalf of Australian Citizens diagnosed with Pompe’s Disease draws to the attention of the Members of the House of Representatives that:

- The life saving drug Myozyme which is funded by Governments to treat Pompe’s disease in over 44 countries throughout the world has not been accepted onto the Australian Government’s Life Saving Drugs Program for Juvenile and Adult onset Pompe Disease sufferers. This is despite evidence showing the drugs success in halting disease progression, prolonging and improving quality of life in Juvenile and Adult onset Pompe patients.

The high cost of Myozyme is out of reach of the average Pompe disease sufferer. The drug is currently funded by the Australian LSDP for infants only. Withholding access to this drug for Adult and Juvenile Pompe sufferers means confinement to a wheelchair and the need for permanent ventilatory support. Untreated Pompe patients require high cost medical care and die prematurely due to respiratory failure.

We therefore ask the Members of the House of Representatives to:

1.

Recognize Myozyme as a life saving drug in the treatment of Adult and Juvenile onset Pompe’s disease

2.

Pass appropriate legislation to place Myozyme on the Australian Governments Life Saving Drugs Program

3.

Allocate sufficient funding to ensure Myozyme is made available to all Australian Citizens diagnosed with Pompe’s disease to bring the care offered in Australia in line with accepted International Practice.

from 4,750 citizens

Petition received.

I further ask the Australian government to recognise Myozyme as a life-saving drug for the treatment of Pompe’s disease and to take urgent action so that Myozyme can be placed on the Life Saving Drugs Program and to provide and fund Myozyme for Australian citizens diagnosed and suffering from Pompe’s disease.

I first met Brad during the 2010 election campaign and made urgent representations on his behalf to the incoming minister for health, requesting funding of Myozyme. The minister responded by advising that the PBAC had not recommended funding for Myozyme for the treatment of late onset Pompe’s disease through the Life Saving Drugs Program on three previous occasions. In early November this year, the committee met again and the request for Myozyme to be included and given government funding is awaiting decision. Brad is a determined man. He has travelled to Canberra to meet with MPs and senators to discuss the need for funding and to explain in detail how Pompe’s disease has impacted on his life and that of his young family.

Currently there are 22 Australians living with Pompe’s disease, and the only way to stop the life-threatening degeneration caused by the disease is an infusion of Myozyme. This drug is out of the reach of most patients, as it costs approximately $500,000 per year. Myozyme does not cure the disease but stops it from progressing further and getting worse. Myozyme is supplied by the American pharmaceutical company Genzyme and is available in the healthcare systems of 44 other countries but has not been accepted on the Australian government’s Life Saving Drugs Program for adult onset Pompe’s disease sufferers. Myozyme is currently funded by the Australia Life Saving Drugs Program for infants only. Withholding access to this drug for adult and juvenile Pompe’s disease sufferers means confinement to a wheelchair and the need for permanent ventilator support. Untreated Pompe’s disease patients require high-cost medical care and die prematurely due to respiratory failure.

Brad has a wife and young family. He works at Nambour Hospital. He has collected 5,462 signatures throughout Australia on this petition. This disease is affecting Brad’s ability to do those everyday activities that most people take for granted. I again passionately urge the Australian government to recognise Myozyme as a life-saving drug for the treatment of this terrible debilitating disease, and I thank my colleagues on both sides of the House for their support of Brad and his fellow sufferers. (Time expired)

Peter Slipper (Fisher, Liberal Party) Share this | Link to this | Hansard source

That petition is in order, as it has been approved.