Joanna Gash (Gilmore, Liberal Party, Shadow Parliamentary Secretary for Tourism) Share this | Link to this | Hansard source

Last month I participated in the Relay for Life walk, which supports the Cancer Care Council every year as a fundraising event. It was the biggest turnout they had had so far. As you can imagine, this really pleased the organisers, and over $200,000 was raised. Each team had to walk the circuit of the Nowra sports oval for 24 hours, and I am pleased to report that the team of which I was a member was called the Plodding Pollies, made up of local politicians and their staff, families and friends.

To remind each participant why they were there, the circuit of the walk was dotted by hundreds of A4-sized epitaphs to family and friends who have succumbed to cancer. Each sheet carried its own personal message written by a surviving friend or family member in its own unique style and with special embellishments.

Those who had passed on ranged from the very young to the very old. Cancer does not discriminate. The simplicity of each message saddened me. It affected me that someone so loved was taken away prematurely. It was sad because perhaps the person who had written the message had only been able to stand helplessly by, unable to do anything.

Each of us, I am sure, has been touched by cancer in some way. Whether your experience of cancer relates to yourself, a family member, a friend or a colleague, once you have lived it, you do not want to repeat the experience.

That is why earlier this year I wrote to the Minister for Health and Ageing on behalf of a constituent of mine who is within reach of help but is simply waiting for a signature on a bit of paper. John Beauchamp of Orient Point is suffering from a form of leukaemia known as myelodysplasia. As a result of this condition he developed a rare blood disorder called PNH, requiring treatment with the drug soliris, which was recommended for inclusion in the federal government’s Life Saving Drugs Program over a year ago.

On 9 February, I was contacted by the department which informed me that the government is taking the necessary steps to see that this drug is included on the LSDP. May has now arrived and Mr Beauchamp’s life is seriously at risk, so I again wrote to get an update on where the matter rests, reiterating the need for urgency.

Perhaps simply saying that Mr Beauchamp has a rare form of leukemia called myelodysplasia is not sufficient and I should elaborate. The condition leads to blood clots in the body and kidney failure. It destroys red blood cells, reduces the amount of white blood cells in his body, which are necessary for fighting infection as well as reducing platelet levels. He has been getting blood transfusions twice a week and cannot work. Slowly but surely his quality of life is being diminished on so many levels. He has had to give up work because he is chronically tired and is now facing the prospect of selling his home to pay for very expensive medical treatment.

Soliris can help Mr Beauchamp, but at the moment it is out of his reach. Soliris was once available for free by the manufacturer Alexion to a number of patients, and, although this had stopped by the time Mr Beauchamp was diagnosed, I commend Alexion on its charity and compassion. The minister only needs to sign off on the recommendations from the Pharmaceutical Benefits Advisory Committee, which said that it should be included in the program.

Mr Beauchamp is physically very weakened. An attack of the flu could well mean a death sentence for him. I really do not know what is holding up the decision, but it would seem that if the drug were capable of being supplied by the company free of charge in a limited distribution then possibly the clinical criteria have already been satisfied.

Mr Beauchamp himself has discussed this with fellow sufferers who have all reported remarkable results. They have gone from two transfusions every week to one in eight months. Some have already returned to work and are making plans for a new future. No wonder John is waiting anxiously at the minister’s pleasure for his lifeline.

The local newspaper is also very supportive, and I thank Glenn Ellard who wrote the piece that I sent to the minister with my latest letter. I have repeated some of Glenn’s comments in this statement in the hope that they will reinforce the story in the mind of the minister. Next year, when I again go into the Relay for Life, a 24-hour relay, I do not want to be reading John’s epitaph on one of the hundreds of pieces of A4 lining the Nowra Showground oval.

John’s case is symbolic of all those others throughout Australia waiting for the minister to grant them reprieve from their death sentence. I appeal to the minister to move with the utmost urgency to approve this drug for John Beauchamp and others like him before it is too late.