Craig Laundy (Reid, Liberal Party) Share this | Hansard source

I second the motion. I add my voice to the statement made by the member for Parramatta. On 28 April 2014, the outcomes of the March 2014 PBAC meeting were made public. At this meeting, the PBAC recommended the drug Soliris for listing on the PBS for the treatment of atypical haemolytic uraemic syndrome, which I will call aHUS. Despite the extremely high price requested, the PBAC decided that the medicine could be most effective if the sponsor agreed to participate in a managed entry scheme. This scheme would require the pharmaceutical company to rebate part of the entire price of the drug depending on how well the patient responded to the treatment. As a result of this important decision, all sufferers of aHUS will be eligible to receive subsidised Soliris on the Pharmaceutical Benefits Scheme.

As the only available treatment that is clinically proven to prevent premature death and vital organ damage for people with aHUS, subsidised Soliris could be life-saving treatment for one of my constituents—like the constituent of the member for Parramatta. This constituent of Reid is a mother of two teenage children who is currently on dialysis and requires a renal transplant as a part of her treatment. For a person suffering from end-stage renal failure, dialysis will only keep them alive temporarily. Undergoing dialysis also entails a substantial reduction in the quality of life, and its outcome is far inferior to that of transplantation.

Professor Steve Chadban is the senior staff nephrologist and transplant physician at the Royal Prince Alfred Hospital. According to the professor, transplantation for patients—

A division having been called in the House of Representatives—

Proceedings suspended from 12:23 to 12:40

Renal transplantation with Soliris offers a high probability of success but ongoing treatment is extremely expensive. The government is currently in negotiations with the manufacturer and sponsor of Soliris, Alexion Pharmaceuticals Australasia Pty Ltd, to reach an equitable price for the drug. Once an agreement has been made, the PBAC will be provided with a price proposal and will conduct the finalisation of the conditions for the listing on the PBS.

Alexion previously estimated a total cost to the PBS of between $100 million and $200 million over the first five years of listing. If a drug costs more than $20 million in any of the first four years of listing, it must be put before cabinet for consideration. This is of course the likely outcome for Soliris. While the cost of Soliris on a per patient case is high, the condition itself is extremely rare, with only two in one million Australians battling this life-threatening blood disease—that is, approximately 44 people across the entire country. Whilst this may at first appear to be a high cost for the benefit of so few people, I submit to the House the following comments made by my constituent's GP prior to the PBAC's positive recommendation:

This is a rare condition affecting people of any age. [My patient] is a mother with teenage children, a wife, a daughter of elderly parents and a potential employee. One does not have to be a health economist to do the calculations [to] realise that the cost to society will be outweighed by the benefits of her health …

Untreated, this syndrome has far further implications than just the physical health of the patient. The lady I have been speaking to in my electorate has described to me in detail the adverse impact her diagnosis with aHUS and the following treatment phase have had on not just her children and husband but also her parents and wider social group. The restrictions of the existing treatment methods have also had an effect on her emotional and mental health. The availability and affordability of Soliris for those suffering aHUS obviously have wider benefits for not just patients but their family and the community.

I congratulate the PBAC for its recommendation to list the treatment on the PBS and for moving us closer to the goal of wider accessibility to Soliris. I also take this opportunity to thank the Minister for Health for all his assistance in this matter. I look forward to seeing this matter finalised and having this life-saving drug more accessible to all Australians who are afflicted with this most horrible condition.

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