Bill Shorten (Maribyrnong, Australian Labor Party, Assistant Treasurer) Share this | Link to this | Hansard source

I present a petition relating to Australians who live with paroxysmal nocturnal haemoglobinuria, or PNH disease, which is a rare and potentially fatal disease of the blood.

The petition read as follows—

To the Honourable the Speaker and Members of the House of Representatives

This petition of Australian Citizens, who are friends, family or supporters of Australian sufferers of Paroxysmal Nocturnal Haemoglobinuria (PNH) disease, a rare and potentially fatal disease of the blood draws to the attention of the House the need to publicly fund out of the Federal Government, the only currently available treatment for PNH sufferers, namely Soliris® (Eculizumab) as a matter of urgency.

We therefore ask the House to introduce and pass any legislation or to take any administrative action available to the House that will enable sufferers of PNH disease to urgently receive breakthrough life saving treatment for this very rare and debilitating disease.

from 1,701 citizens

Petition received.

This petition has been considered by the House of Representatives Standing Committee on Petitions and has been certified as in accordance with the standing orders. The petition draws the attention of the House to the need to publicly fund the only available medication for PNH sufferers, the drug Soliris, as a matter of urgency.

PNH can cause the onset of many varied health conditions, including disabling fatigue, poor physical function, fatal blood clots, chronic kidney disease, amnesia, stroke, heart failure and vital organ damage. The PNH Support Association of Australia has advised me that it kills one in three sufferers within five years of diagnosis if it is left untreated. The drug Soliris suppresses these symptoms and offers PNH patients a normal life span. Studies show that Soliris immediately and sustainably reduces the destruction of red blood cells in almost 100 per cent of patients living with PNH.

Noting all of this, I am particularly pleased to recognise that, since this petition was initiated, the Gillard government, on 9 December 2010, approved funding for Soliris on Australia’s Life Saving Drugs Program. This will make a huge difference to around 100 of our fellow citizens’ lives annually—plus, of course, the many more Australians who are family and friends of people who are living with PNH.

In a letter I have received from Linda Charlton, the President of the PNH Support Association of Australia, she has written:

On behalf of the PNH Support Association of Australia and all those affected by PNH, I would like to thank you for your show of support during our campaign for Government-subsidised PNH treatment.

She goes on to write:

This decision (to approve funding) has put an end to a great deal of anxiety and frustration felt by the PNH community, which—without access to effective PNH treatment—faced further deterioration of health, reduced quality of life and, ultimately, death.

I acknowledge the role played by the supporters of this petition—and in particular my hardworking and very capable electorate officer, Annette Hibberd, and her great friend Grace Gallucci, who lives with PNH—in bringing this issue to the attention of the government and the parliament. I firmly believe it remains an integral part of our democracy—an organic, street-wise and, indeed, longstanding practice of accountability—that we present petitions like this one in this place. The fact that this locally initiated petition pre-empted a recent government decision on Soliris is, in fact, real testament to the grassroots wisdom of Australian people.

People who live with debilitating medical conditions like PNH or who live with a disability often have enlightening and profoundly important and empowering stories and evidence to give the legislators and decision makers, as do their families and carers—a fact on evidence in the recent Productivity Commission draft report about a National Disability Insurance Scheme. We should always listen to people who lack power. It is not just our duty but a key source of advice on how this parliament and this country can conduct themselves. I think it is the quiet, modest pursuit of change through the parliament—the moderating institution in Australian life through democratic means—that means that I can recognise and admire all of the efforts of the people who signed this petition as I table it in our national parliament.

Question agreed to.