Joanna Gash (Gilmore, Liberal Party) Share this | Hansard source

I would like to concur with my colleague from the other side, who has just spoken, because I am going to speak about the very same subject. Jenny is a 29-year-old, is married, lives in Heathmont, Victoria, and some day wants to have children. Jenny also has a death sentence hanging over her head but with a single stroke of the pen, Jenny can be reprieved and go on to enjoy a long and full life.

Up until January this year, Jenny was employed as a weather forecaster with the Bureau of Meteorology. In January she collapsed and after extensive testing was diagnosed with an extremely rare condition, PNH, or paroxysmal nocturnal hemoglobinuria. It is a disease in which the body destroys its own red blood cells, eventually leading to organ failure due to the lack of oxygen being circulated.

Jenny’s life has been turned upside down. She is chronically breathless and has had to give up many things most of us take for granted. She has reduced her working hours, she cannot travel, and she has given up playing basketball. Even as we were speaking to her last week, we could hear she was running out of breath.

Her husband Luke is terrified. Just the other morning Jenny woke suddenly at about one o’clock with a violent episode of vomiting. Her husband had to get up, clean his wife up, change the sheets, clean up the mess and generally nurse her. Both are losing an enormous amount of sleep. Fortunately, her mother lives close by and comes to the house regularly to help clean. Jenny also has a supportive network of friends who rally to help her. Right now the only treatment available to her is to have blood transfusions every three to four weeks. Along with her health, her quality of life is slowly but surely diminishing. The point is that it does not have to be like this.

Last week I meet with Jenny and her colleagues from the PNH Support Association in my office here in parliament. Linda Charlton is the President of the PNH advocacy group and is also on the compassionate program with the drug Soliris. The group came to beg the government to sign off on the life-saving drug, Soliris, which will allow Jenny and about 50 others under the sentence of death from PNH to have a chance to live a long and full life. On that day, the group met with the Prime Minister and minister for health, who acknowledged the drug Soliris has been recommended for adoption by the PBAC for the Life Saving Drugs Program. On that day also, my colleague the member for Ryan, asked in question time:

Given that the government has wasted billions of dollars on the home insulation and school building schemes … why, 20 months after the PBAC first recommended listing of the drug, does it remain unlisted on the PBS?

The Prime Minister’s answer was disappointing. It was not incorrect but was lacking in real empathy because the core of her reply went to the fact that a price had not been set. And the Prime Minister said as justification for the rationale: ‘It happened every time under the Howard Government as well.’ What a pathetic and heartless statement that was. The Prime Minister seems oblivious to the fact of the highly shortened lifespan of PNH sufferers. The five- to 10-year survival span is not measured from the day of the question.

Indeed, two people have died since the Prime Minister first came to office three months previously. How many have died since the PBAC delivered their recommendation? And how many will die while they wait for this government to make up its mind? Surely the power is available to give interim approval and wear the cost differential. After all it is a matter of life and death and sometimes in the interests of compassion and humanity we have to put aside some of our dogmatic rules. I do not know what the cost of the drug is but I do know what the cost of doing nothing could be. Twenty months is just far too long to wait in this case and I appeal to the Prime Minister to put aside the rule book. Yes, there is a process but that should not be the be-all and end-all.

Linda Charlton, who led the deputation to the Prime Minister and minister for health, was gracious in her comments, describing the Prime Minister as ‘lovely’, and ‘she was fantastic’. Wouldn’t it be wonderful if the Prime Minister could show just how fantastic she was by approving the subsidy of Soliris. Measured against a life, it is a small price to pay. Flattery and soothing words just may not be enough.

In closing, I make mention of my constituent in Gilmore, John Beauchamp, who also has the disease. We are indebted to all who contacted me to try and assist him. I especially want to thank Glen Ellard of the South Coast Register for printing John’s story. As a result of the combined effort of everyone concerned, Alexion Pharmaceuticals has added John to their compassion program. I urge the government to sign the documents now so that Soliris can be made available to those whose lives are at risk. The process has been completed; it just needs the Prime Minister to sign off.

May I wish all in the House, the attendants, the Comcar drivers, the cleaners and the security staff all a wonderful Christmas and a safe and happy New Year. You are simply the best and we all appreciate you.

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