Terri Butler (Griffith, Australian Labor Party) Share this | Hansard source

I rise today to bring to the attention of this parliament the rare and life-threatening disease, atypical haemolytic uremic syndrome. AHUS, as it is known, is a genetic disease which can severely damage vital organs such as the kidneys, heart and brain. It causes abnormal blood clots to form in small blood vessels in the kidneys. If the clots restrict or block blood flow they can cause serious medical problems.

The condition can occur at any age but more than half of those affected are children. Associate Professor David Mudge, Consultant Nephrologist at the Princess Alexandra Hospital in Griffith, runs a national AHUS patient register. He has reported that more than two-thirds of AHUS patients die, require dialysis or develop permanent kidney damage within one year of diagnosis, while 32 per cent die within four years. Sufferers' health can be greatly improved with access to the drug known as Soliris. Unfortunately, this drug comes at a cost of $600,000 a year, which is well outside the reach of most sufferers.

Nineteen-year-old Isabelle Ruiz was recently diagnosed with this rare, incurable illness by the Royal Melbourne Hospital after passing out in the street. Isabelle had just finished her first year of a biomedical science degree at Swinburne University and she had received a high distinction in chemistry. The Royal Melbourne Hospital was able to provide Isabelle with six doses of Soliris, but that supply is now depleted. Isabelle's family, friends and supporters are now trying to raise awareness and, of course, money to purchase a further supply of this lifesaving drug, at a cost of about $20,000 a dose.

Soliris saved Isabelle's life. It saved the lives of many other suffers who have been fortunate enough to get access to this medication. The AHUS Patient Support Group of Australia, as well as health professionals and families and friends of AHUS sufferers, have urged the Pharmaceutical Benefits Advisory Committee to recommend to the Minister for Health that Soliris be funded through the Life Saving Drugs Program. Soliris is the only treatment available and clinically proven to prevent premature death and vital organ damage in those with AHUS.

The Therapeutic Goods Administration approved Soliris for use in October 2012. Patients in 30 countries—including the USA, countries throughout Europe, and Japan—have access to this lifesaving therapy while Australia is lagging behind. This needs to change. I urge all members of the community to go to the AHUS Patient Support Group Association website to find out how you can support the association's campaign, and I urge the Pharmaceutical Benefits Advisory Committee and the health minister to approve the funding of Soliris so that Isabelle and others like her have some chance of living a longer life.

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