Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I rise tonight to talk about an issue that not only affects me but also affects a lot of people of Australia, and probably a lot of members in this place as well. Hearing the member for Hume speak this afternoon so honestly about issues that are dear to him has inspired me to be a little bit more honest and not hold back as much as I would normally.

I want to talk about a particular type of cancer called a neurofibrosarcoma, a rare type of tumour. It is also sometimes called a peripheral nerve sheath tumour. This type of growth only develops in areas around the peripheral nerves, which are parts of the nervous system that do not include the brain and the spinal cord. Just remember the brain bit there. Examples include the nerves that run along the arms and legs. Soft tissue sarcomas are one per cent of all cancers diagnosed each year. The neurofibrosarcoma makes up six per cent of that one per cent, so it is very rare. My wife Cheryl's daughter died at the age of 10 of a neurofibrosarcoma in her brain. It was extremely rare. It very rarely goes in the brain.

That segues into a particular issue that one of my constituents has contacted me about. He wrote to me:

Steve,

Thanks for the opportunity to bring your attention to some very major concerns about the unavailability of Zelboraf on the PBS.

I see the shadow minister for health in here and I will make sure I send this speech to him to have a look at and fight the fight for us. The letter continued:

The subject of Metastatic Melanoma treatment for those that are diagnosed with it, is highly emotional, because we are dealing with peoples life or death choices. Melanoma can be quite complex in terms of what treatment, (if any), can be administered & in Dianne's case, she was tested to see if she had a particular mutant gene BRAF V600, which meant she did, she could be included in the GSK drug trial that they were recruiting for at the time. The possibility of her having that gene for treatment with Zelboraf, (Vemurafenib—Roche product), or the combination of BRAF Inhibitor, Dabrafenib and the MEK Inhibitor, Trametinib, (GSK product) was a 50/50 chance. Luckily for her, she had it present in her Melanoma's. IF she hadn't, she probably had 3-6 months life expectancy. As it is, after 7 weeks of treatment with Zelboraf, her Melanoma tumours have reduced in size by 70%, which is fantastic news, so far!

My concerns are this:-

1. Under the terms & conditions of the Patient Information & Consent document, dated 1st May, 2013, it states, "GSK, (the study sponsor),the regulatory authority, or the study doctor, may choose to stop the study at any time. We will give you the reason at that time. If this happens, the reason will be explained to you". My Question: if that happens, how does Dianne continue her treatment? The ONLY answer I'm aware of if this occurs, is she has to purchase Zelboraf from Roche, through a pharmacy account, at $2385 per week +. Is this a fair & just outcome for ordinary citizens of this country? The other consideration is, GSK recruitment for this trial, will cease in 2 months' time. What would have happened to Dianne, if she was diagnosed in 3 months' time? Indeed, what will happen to those that do get diagnosed within this time? Death or $2385+ per week!

2. Roche have twice had their submission to the PBAC, rejected, for inclusion on the PBS. They have now stated that they will never submit the product again & that they have taken 370 patients off the Free Scheme. I believe that the major reason for this rejection, was that the product was far too expensive to have included on the PBS. I believe it is included on national health schemes in some countries around the world. As we are dealing with people's lives here, is it fair & reasonable to reject this drug from inclusion on the PBS, when it clearly has & is, contributing to much longer living for many patients. There is a guy in WA who has survived so far, on Zelboraf, for 38 months.

I will finish off by going to the end of his letter:

Steve, this is a very emotional subject & through Melanoma WA, we are going to up the ante on this subject & try to get some national sentiment aroused & some action by politicians to have these drugs & particularly in my case—Zelboraf, placed on the PBS. It may sound cynical, but if you were to get really involved in this area of Government, your standing within Australian politics would go sky high. I know you alone can't deliver on any promises or requests but we need politicians to find a way with this! Maybe you can lead it.

There was also an article by Sue Dunlevy titled 'Re-mortgage to live' about people having to remortgage their houses to pay for drugs that were not on the PBS. In a situation where we see so much bureaucratic waste, we should be looking after people in Australia. I urge that we run a trial on these drugs.