Barry O'Sullivan (Queensland, National Party) Share this | Hansard source

I rise tonight to speak on what is a significantly important matter. As I lead into my speech, I want to briefly reflect on what I think is one of the most powerful honours attached to being a senator in this federal parliament. That is to give voice to someone who does not have the capacity to give voice to an issue for themselves. This evening I stand to speak on behalf of Ms Norma Hamawi, who is a grandmother. I stand here as a grandfather speaking on behalf of a particular grandmother, but indeed in spirit on behalf of many grandmothers, grandfathers, mothers and fathers around the country who are in a most anxious phase of their lives as their children and their loved ones—their sons, their daughters, their brothers, their sisters and, indeed, themselves in some instances—are suffering from a very severe and debilitating condition called atypical haemolytic uremic syndrome.

This disease seems to particularly strike young women in their teens and early womanhood. It is a violent disease. It is a disease that attacks their organs, in particular their kidneys, their livers and eventually their brain. Without treatment, they can suffer from complete organ failure in periods as short as three or four months. But there is a solution to their plight. The solution to their plight is a drug called Soliris, manufactured by Alexion Pharmaceuticals in the United States. Soliris has been here in Australia for a long time and is available through the PBS scheme for a particular condition, but not the condition that I have mentioned. Soliris is available today for patients in this country who suffer from another rare and disabling disorder called paroxysmal nocturnal haemoglobinuria. That the drug is not available to Australians who are suffering from aHUS.

Returning to where I started, Ms Hamawi is the grandmother of a beautiful young woman named Bianca Scott. Bianca is an 18-year-old student or immediate past student who graduated from her high school in 2013 with all of the wonderful promise that comes with that phase of our lives, as we finish our term of education and go out into the world to explore and to grow. Only that was not Bianca's experience. Within a very short period of Bianca found herself on full-time treatment for an attack of this condition on her kidneys.

Because the drug is not available through the PBS at this time, her family set about trying to do what every parent and grandparent would do, and that is to supply their child with a chance at life—a chance at life in the same way that all of us in this chamber tonight and our colleagues in this entire parliament enjoy as I speak. The family have invested $234,000 of their money in purchasing the drug for young Bianca up until today. They have nothing left. This family has nowhere to go. They have no chattels left to sell. They have no friends or support in the community any longer, after they have enjoyed massive support from friends and family in being able to supply the drug to young Bianca for these past months.

The tragedy is that Bianca's family went to the pharmaceutical company, Alexion Pharmaceuticals, with $15,000—their last $15,000—of the $24,000 required to buy these vials of life that last for two weeks. Twelve thousand dollars every week is the cost to this family to keep this little girl alive and to keep and protect her from long-term and debilitating organ failure. After paying the company $234,000 just in this calendar year, they expected that the company might, on a humanitarian basis, have provided their little girl with the drug this once, even though they cannot pay the full amount.

I do not intend to spend a lot more time on Alexion Pharmaceuticals tonight, because I have put a proposition to them, and I am hoping that somewhere in the world tonight it is under active consideration. They have an application before our federal health department. That application is making its way through the system, through the due diligence, as it should. To their credit, the company have a current humanitarian trial in this country where they are supplying this drug free of charge to 11 sufferers of aHUS. But the tragedy is that there are another 11 souls, as best I can research, who currently are in need of this drug.

I am calling upon the company to consider extending their humanitarian trial until such time as our health department has completed the due diligence required to make a decision with respect to the acceptance of this drug. I understand that that is at an advanced time. I also understand that there will be further negotiations in the coming weeks. I understand that progress has been made. But, if we are unable to get a positive solution with respect to this drug within the next couple of months, people like Bianca Scott will not be with us—or at least they will by then have suffered such extensive damage to their organs that it will not be able to be reversed.

I understand that Alexion are not a charity. I understand that they cannot go all around the world putting their drug, in which they have had considerable investment, out there for nothing. But I put a proposition to them that they do so, for free, as an investment in being a good corporate citizen in our country until such time as our health department has had the chance to properly and carefully navigate the path that is required to have this drug approved.

And I say this: I intend to rise to my feet at every opportunity I can over the coming days and the coming weeks and the coming months to progressively continue my call to Alexion. I will try and garner support from any quarter that I can by any method that I can until such time as they provide us with the relief that is required for these people whilst our government looks seriously at approving their drug on terms and conditions that are very financially favourable to them.