Andrew Robb (Goldstein, Liberal Party, Chairman of the Coalition Policy Development Committee) Share this | Hansard source

Tonight I would like to raise the plight of Catherine Jenner, a young woman from Cheltenham, which is in my electorate of Goldstein. This mother of two is just one of 25 people in Australia to be suffering from the rare recessive metabolic disorder known as Pompe disease. Catherine's body is wasting away, despite approval some four years ago by the Therapeutic Goods Administration of treatment for this disease. The federal government has not seen fit to pay for this life-saving treatment. The disease, caused by a deficiency in an enzyme, will progressively disable the heart and muscles, and within two years Catherine is expected to be confined to a wheelchair.

This is a tragic case because there is a very recognised treatment widely available. Myozyme is an enzyme replacement therapy—a well-established drug which stabilises the condition. It is now available in more than 50 countries. It is not a cure but it is effective in slowing the progress of this insidious disease. In 2008 this treatment received marketing approval from the Australian Therapeutic Goods Administration. Since then the Australian Pompe's Association has lobbied the federal government to approve funding for this therapy. The Pharmaceutical Benefits Advisory Committee has deferred a decision on listing pending further information. We all know what that means—it is a euphemism for delay which has been orchestrated from political circles, from the federal government.

These types of delays are unfortunately typical of what we have increasingly seen from this government over recent years, and they are a direct result of financial mismanagement.

In fact, they are delays which stem from things such as that evidenced just last week by the World Economic Forum report, which confirmed that, in 2007-08, Australia ranked 10th in the world in terms of wastefulness of government spending but that, by 2012-13, Australia had slumped to 48th in the world. When you turn that into real dollars—real programs and real quality of life for individuals—we are talking billions. Billions of dollars have been wasted by this government through lack of attention to detail, misplaced priorities and the sheer incompetence associated with things like the pink batts scheme and the schools program. The list goes on and on.

That is why this government has a $120 billion black hole in unfunded promises. After all the potential benefit of the resources boom and after having had the terms of trade higher than we have seen for 150 years, we are left with a $120 billion black hole—and these sorts of programs not being able to be funded. This is a shame of the highest order. It is so frustrating that this government is indefinitely deferring access to desperately needed drugs and treatments.

Catherine is the human face of the impact of the government's penny pinching and mismanagement. She said:

The available treatment can't undo what is already done to my body but it can arrest the progress of the disease. My body is getting weaker and I am getting more and more exhausted. Within six months I will need a walking aid and a year after that I will be in a wheelchair. I need this treatment now. I go between anger and disbelief that I have a life-threatening disease for which treatment is available but my government won't cover the cost.

(Time expired)

See this speech in context