Tuesday, 4 March 2014
Atypical Hemolytic Uremic Syndrome
I rise today to address the house on a rare medical condition that has recently affected Isabelle Ruiz, the granddaughter of Mary Meldrum, one of my central Australian constituents. The disease that I stand here in front of you to talk about today is atypical haemolytic uremic syndrome, also known as aHUS.
This condition is a disease that primarily affects kidney function. The condition, which can occur at any age, causes abnormal blood clots to form in small blood vessels in the kidneys. These clots can cause serious medical problems if they restrict or block blood flow. This disease is life threatening and without the drug Soliris there is a more than 65 per cent chance that patients suffering from this disease will die.
Patients require treatment via dialysis. If treatment is unavailable or unreachable, they develop permanent kidney damage within one year of diagnosis. Submissions have been made to the Pharmaceutical Benefits Advisory Committee by the AHUS Patient Support Group of Australia as well as health professionals and families and friends of aHUS sufferers, urging the Pharmaceutical Benefits Advisory Committee to recommend to the Minister for Health that Soliris be funded through the Life Saving Drugs Program.
The Life Saving Drugs Program is an Australian government initiative that provides subsidised access to those eligible to expensive, yet life-saving medication. It is estimated that treatment for this young member of our community comes at a cost of $600,000 a year, which obviously puts it out of reach for her and her family and friends—as it would for most Australians. Before a drug is made available on the Life Saving Drugs Program it must be accepted by the Pharmaceutical Benefits Advisory Committee as clinically effective, but not recommended for inclusion on the Pharmaceutical Benefits Scheme due to unacceptable cost effectiveness.
Soliris has already—and rightly—been made available for patients suffering paroxysmal nocturnal haemoglobinuria, which is also a rare, generally acquired, life-threatening disease of the blood. We are simply advocating for Soliris to be given the same consideration for those suffering from aHUS. This month the Pharmaceutical Benefits Advisory Committee will meet to consider whether the drug fits the stringent criteria for the Life Saving Drugs Program. Unfortunately, it failed to gain approval last March.
Through persistence and dedication, the AHUS Patient Support Group of Australia has been campaigning for this rare disease to be placed on the Life Saving Drugs program. This determined group has collected petition signatures, and I am calling on my fellow parliamentarians to encourage the government to provide some funding for Soliris through the Life Saving Drugs Program. The support in response to this petition has been amazing, with more than 22,000 Australians pledging their support for this petition. Just under 1,000 of those signatures were received in Alice Springs, home to the spectacular MacDonnell Ranges. This level of support is significant, especially given that the 22,000 signatures were received within just one month.
In closing, I urge all fellow parliamentarians to get behind the AHUS Patient Support Group of Australia in this very important petition to ensure that these life-saving drugs are supported by the Pharmaceutical Benefits Advisory Committee.