Tuesday, 22 May 2012

Launch of the Kick Sarcoma Campaign

Launching the Kick Sarcoma Campaign with Ellie Cole
It was an honour to launch the Kick Sarcoma Campaign with Ellie Cole and Grace Moshi in Parliament House. For more information on the Kick Sarcoma campaign go to - http://www.kicksarcoma.org.au/

Thank you Grace and thank you Ellie. And to all others who are here, and I also acknowledge Julie Bishop who is here on behalf of the Opposition, I also see Peter Dutton, the Shadow Minister for Health, and representatives of the government including the Chief Government Whip Joel Fitzgibbon. Members of the diplomatic corps too and I thank you for your active engagement with this.

I was talking to Ellie just before and I said well you’re off to London.   You’re a Paralympian What can you do the 100m freestyle in? She said one minute and three. Then she said what do you do a hundred metres in? I said that there is a great benefit being still subject to the Official Secrets Act.  And, to me, my swimming coach always said “Kevin, for you we don’t need a stop watch, we need a calendar”.

She has challenged me to a 100m out at the AIS. Robbie McClelland, I know you’re a keen swimmer. But I don’t think the country is ready for me in Speedos. I leave that to you Julie and the person whom you must be responsible for.

Cancer is a global story; it’s a national story; but apart from everything else it’s a very personal story. And those of us in this place still affected by the spirit and the life and the commitment and the sheer determination of Peter Veness - that’s part of who we are in this building and I see his face as clearly before me today as if we were here years ago.

I don’t think anyone here today does not have some member of their family or someone who is a friend who is near or dear to them who hasn’t been affected by cancer. It is such a global story. The other thing to say about cancer is that it is so bloody unfair. That’s what always gets us about the inherent injustice of this thing. And again we are thrown back to our own personal stories. My dear beloved mum, the teetotaller from central casting, the anti-smoking campaigner from central casting, having lived the life of an angel, dies of lung cancer. Why? We don’t know and we never will. But that brings us the honouring of Ellie here today.  Because when we think cancer is so unfair; it is three fold unfair when we think of the affect on little children. Last night in this place I ran into a Liberal Member of Parliament whose partner had their child die of sarcoma at the age of 10.

Those of you have been in this place for long enough will remember Con Sciacca. Con Sciacca’s son, Sammy, died at the age of 19, 21 years ago - I remember as if it was today - of sarcoma. A young boy just out of high school, full of life and opportunity and then no more.

But then we have the extraordinary stories of remarkable and gutsy survival. Exhibit A. She’s a remarkable person. This one, Ellie, was diagnosed with sarcoma at the age of 2. Put yourself in the position of her parents, as I am advised, taking the extraordinary decision to have her leg amputated at the age of three in order to prevent the spreading of the disease.

Then as part of the therapy, in the great Australian tradition, a month or so later we throw her into a swimming pool and say off you go. And Bruce Billson is here. And I’m told the pool that she trained at was in Mornington, the Mornington Peninsular pool. Down on the peninsular there and the coaches said that she would take a year to swim in a straight line. According to what I am advised, it took you a week or a few weeks at best.

And then her career since then - an extraordinary Paralympian. And there she is off to London representing Australia. She was in Beijing. She was at Delhi. I just think it’s a remarkable story. Put your hands together for Ellie.

And in terms of personal stories, there’s one which hasn’t been spoken of today and that’s Grace (Moshi) herself. Grace as you know is the wife and the tolerant, forbearing partner, indulgent person towards my former chief of staff Philip Green. Anyone who could endure the ravages of living with a chief of staff to me is deserving of at least some form of Nobel Prize. But I leave that minor problem to one side. It is Grace’s story herself. Philip as you know before he came to me, firstly as foreign policy advisor to me as Prime Minister and then as chief of staff as Foreign Minister was most recently our High Commissioner in South Africa.

It was while they were on posting in Africa that Grace herself developed sarcoma. She discovered a lump in her ankle in late 2007 - the medicos in Africa said it was a benign lump. It was not. Therefore there was delay in the surgical intervention. She returned to Canberra eventually for treatment underwent 7 rounds of surgery.  7 rounds of surgery over a period of 18 months and undertook radiotherapy.  For most of that 18 months she was in a wheelchair. And she stands before us today. Put your hands together for Grace. She is of course as you would have heard from her medical dissertation before, a medico in her own right and has now stepped back a bit from full time medical practice to dedicate much of her time to this institution behind us. The ‘Kick Sarcoma’ campaign under the Sarah-Grace Sarcoma Foundation. And she continues to work as a consultant in haematology at the Canberra Hospital.

These are extraordinary Australian stories and they are stories which literally take your breath away. Which takes me to my final point about the nature of this cancer itself and to you seriously bright and smart people from research land who actually know what you’re doing. And you don’t just talk about cancer, you do something about it.

You have my admiration for your skill, professionalism, your brain power and what you dedicate to this task. In Australia we have just under 1000 people who are new sufferers of sarcoma diagnosed each year. That’s a thousand. The mortality rate as Grace said before is 50 percent. The thing for us all to reflect on though is that 20 percent of all child and adult cancers are sarcomas. So this is where the challenge lies.  Yet only one percent of our national research effort goes to sarcoma. This is not to decry the other areas of need. Within cancer they are vast. I am intimately familiar with that as I am sure the Health Minister is, Tanya Plibersek who is with us today as well.

And beyond that all the other diseases which challenge human kind. But on this one what I think we are all saying by our presence is that it is time to put a bit more shoulder behind the wheel because this is such a massive killer.   That’s why our Grace has established this foundation, the Sarah-Grace Sarcoma Foundation.

Its vision is pretty straight forward:
-         - to raise funds for research fellows with grants.  It’s expected high level researchers will    establish their own research facilities after the completion of three year research fellowships;
-         - through community awareness to improve early diagnosis;
-         - aim to improve sarcoma prognosis by 25% in 25 years;
-         - improving outcomes in sarcoma therapy, dedication to curing all types of sarcoma; and
-         - through research and medical trials aiming to find therapies to improve sarcoma  prognosis further.

These are very nuts and bolts practical ambitions for this Foundation and that’s why we have Kick Sarcoma Day - the forgotten cancer. So Grace well done, you are a woman of enormous strength and of great commitment. Ellie you are a woman of enormous strength and great commitment.

And on the shoulders of these two women rests so much of our hopes here to beat this thing which afflicts so many Australians and people around the world today.

Thank you.

Wednesday, 9 May 2012

Constituency Statement

My constituency statement regarding families with disability in my electorate and the NDIS - 

Disability affects everybody. I recently met with two families in my electorate who told me of the impact that disability has on their daily lives—the sleepless nights, the financial difficulties and the toll it takes on their relationships. Tanya and David care full-time for their son Jaden who has a genetic disorder called 1p36.3 chromosome deletion. This means that Jaden experiences frequent seizures which cause him to stop breathing—often in the middle of the night. I think any of us who are parents would automatically empathise with what must go through the minds of parents at such a time. All of these folk have had one thing in common: they said they are not looking for payouts; they are looking for a bit of support. To put it simply, these families are doing it tough and they deserve more support.

I am proud of the work done in my community to support people living with disability. One is called the Tertiary Place. They have also partnered with other organisations to facilitate a sports program for young adults with disability. We are also lucky to have the Endeavour Foundation based on Brisbane's Southside, just down the road from my own electorate office. What started out over 60 years ago with a group of mums in Coorparoo trying to give their kids a fair go has expanded to an organisation that now supports over 3,000 people with disability. The Endeavour Foundation is also the largest employer of people with a disability in Australia. This organisation is an example of the contribution that individuals with disability can make both to our community and to the economy. We are also fortunate enough to have individuals who are passionate about making a difference in our local community.

I recently supported a funding application on behalf of Kath Cory and Tina Graham, who have established BestLife Inc. Kath and Tina identified a need in the Mount Gravatt community for a weekend independent living centre. They saw a lot of families at breaking point looking after kids with disability and wanted to create something to help these families. Their dream is to be able to provide housing for individuals with disability to live an independent life, to provide some equality of choice for all people. That is what is already happening at the grassroots level my community.

The question here is: what can our government do to support such individuals into the future? That is why the National Disability Insurance Scheme is such an important first step in addressing the concerns of these families, community organisations and individuals. Furthermore, it is important to support the full spectrum of disability, from implementing an NDIS for families and their carers to supporting front-line and advocacy services to make sure that we are truly meeting the needs of our community. These are the most vulnerable Australians. A mark of our level of sophistication as a country and as a community is to ensure that they are properly looked after.