Susan Alberti makes a personal plea to the PM
An open letter to the Prime Minister and the Minister for Health in National Diabetes Week 2010 from the President of JDRF Australia, Susan Alberti AO.
Dear Prime Minister Gillard and Minister Roxon,
In this time of intense political debate, I feel the need to remind you of what is really important to the people you represent. I want to tell you about the realities of a disease that has significantly affected my life and the lives of hundreds of thousands of other Australians – type 1 diabetes.
Type 1 diabetes is a devastating and life-threatening autoimmune disease that occurs through no fault of the sufferer. It leaves people living a daily cycle of insulin injections and finger pricks, where even a small mistake or unpredictable change can be potentially fatal.
It inflicts an enormous personal and medical burden on individuals and their families and friends. With a range of devastating health complications that can arise over time, it also imposes a significant healthcare cost on the nation. Australia has the 6th highest incidence of type 1 diabetes in the world and every year more and more children are being diagnosed.
My life has personally been deeply touched by this disease. My only daughter, Danielle, was diagnosed with type 1 diabetes in 1981 at the age of 12. In 2001 Danielle died in my arms from complications of diabetes in the middle of a flight from the United States. We were travelling together to Australia so that I could donate one of my kidneys to her, as hers had started to fail due to the disease. I myself was also diagnosed with type 1 diabetes four years ago.
Unfortunately, my story of loss is not uncommon. The same situation happens far too often – as a parent recently said to me “My biggest worry is when I go into my son’s bedroom every morning – I just hope I can wake him up.”
Amongst this sadness, there is hope. Medical research has made wonderful progress, giving people with type 1 diabetes a life they could only dream of 20 years ago. Australia has traditionally been a leader in this field, with our scientists participating in some of the most significant breakthroughs to date.
But I am sorry to say that Australia is falling behind. Our scientists are still passionate and determined, but Australians with type 1 diabetes have significantly less access to exciting new therapies and technologies than people in other countries. In the US and Canada, a child newly diagnosed with type 1 diabetes can participate in a number of clinical trials that will slow down progression of this disease. An Australian child diagnosed with type 1 diabetes has no such opportunities. Globally there are 153 clinical trials available for people with type 1 diabetes: there are only nine in Australia.
We can do something to address this. The establishment of an Australian Type 1 Diabetes Clinical Trial Network like those that already exist overseas will help make these opportunities available to Australians who can benefit..
I have personally committed $500,000 towards the establishment of such a network in Australia. A week ago Tony Abbott, the Leader of the Opposition, announced an election commitment of $35m for a Clinical Trial Network for Type 1 Diabetes. I implore the Government to make the same commitment – and it will be welcomed by all Australians and particularly all whose lives are affected by diabetes.
This week is National Diabetes Week, a time where we can reflect on the millions of people living, and dying, with diabetes worldwide. It is also a time to act. Make no mistake – we are in a critical situation and you have the power to dramatically change the lives of both adults and children living with type 1 diabetes. This disease goes beyond politics but your support is key to providing hope for a different future for those living with it.
I will not rest, and nor will the entire type 1 diabetes community, until a cure is found. Nor should the Government.
Yours sincerely
Susan Alberti AO
President, Juvenile Diabetes Research Foundation
I was in Washington with Sue Alberti at the JDRF International conference when the message came through that Kevin Rudd had committed to an initial $5,000,000 funding for the Australian CTN. I believe this commitment was a direct result of advocacy from JDRF at Kids in the House, Sue’s personal commitment and the genuine support from a wide range of parliamentarians. It was greeted with much enthusiasm by all at the conference and continued the solid bi partisan support the Howard and Rudd Governments have shown for Type 1 Diabetes research and therapies.
Tony Abbott’s commitment of an additional $35,000,000 if elected continued this bi partisan support.
I urge all concerned to join with Sue Alberti and add your personal emails to the PM and the Health Minister saying just how important and beneficial their similar commitment is to Type 1 sufferers.
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This is indeed an insidious disease which should be a top priority for both government and opposition to support as a cure is being sought. PM please address this now. We need your help.
Richard Jenkings
As a mum to a 9yr son with Type 1, diagnosed August 2009, I read this with tears of the many possibilities of our everyday existence as a family having a child with type 1 diabetes……The rollercoaster with so many ups and downs is exhausting to say the least!…………We will never give up hope for our son and the many living with Type 1 to find a cure…………Susan Alberti you are a wonderful person, thank you
We at JDRF will never give up. Keep the pressure on Govt by your lobbying and emails to all concerned. All we are asking for is a "fair go"!!
Please PM help JDRF to find a cure and address this problem now. Your pledge will help hundreds of thousands of Australians still suffering with type 1 diabetes.
There are no holidays away from Type 1 diabetes. Prime Minister Gillard please support this cause. My daughter was 7 when diagnosed – she's now 42 and has eye problems. My wish is to see her get a break from 4 injections per day. Breaks my heart when I hear young 2 or 3 year olds being diagnosed with this condition. HELP
Well, I live in Canada and was diagnosed in the late 90's. I never had access to any trials, but i did have a good team of doctors who led me on the right path. It appears to me, the single most promising research to date is over in New Zealand, with professor Elliot and the team at LCT and their 'diabecell' trials. This is amazing work, and hope Australia (and Canada for that matter) work closely with this amazing team I believe there are human trials in New Zealand, Russia and possibly Australia.
Come on Prime Minister, give your support to help Sue Alberti and her team at JDRS.
Please keep up those emails and phone calls to MPs. We need this now. The Politicians should be told how important this is to our children and families. I urge you all to take time to do this.
My son was diagnosed in 2004 at age 14 with Type 1 diabetes. He often feels alone dealing every hour of every day with the horrid disease. Thank you to all of you out there pushing for recognition, understanding and more importantly a cure. PM I ask you in your endeavour to pledge more funds to the cure, could you also voice loudly the massive difference between type 1 and type 2 diabetes. My son is sick and tired of being put in the same pigeon hole. Thanks again for all efforts everyone.
I've been T1 since 1973, my dad was diagnosed at the age of 2 (in 1932), and 3 of my 4 siblings all have Type 1. Fortunately none of the 10 in the next generation have shown any sign of it (the oldest is now 15)
Personally, I dont think a cure as such will ever be forthcoming, maybe just simpler control methods such as possibly the "diabecell" thing. Thats not a cure folks, its a simpler control method, which needs monitoring and if my memory is corrent, requires replacing / fresh implants every couple of years
Better publication about the differences between T1 and 2 would help too… more importantly as well for the T2's not to think that just coz they can (well some of them can) get away with tables / diet etc that they dont lump us in the same boat as well…. I've heard numerous T2's tell T1's rubbish comments. They of all people (bar T1) should understand the differences
Oh and another… for medical training… A family friend is doing 1st medical… His lecturer told the class that T1's can't hypo. Sam: Umm, sir, yes they can. (He'd been at my place the weekend before and helped with a fairly good one before lunch). The lecturer flatly rejected his claim, reiterating that T1's cannot hypo. Sheez. What hope do we as those afflicted with this, have
Come on PM, you can do it! My friends 3 year old son was diagnoised earlier this year & you know I had no idea what type 1 diabetes meant…I simply though it was something that they could control by watching what they ate…I had no idea how complex this situation is! Why are you not out there contributing funds to this foundation so they can make ignorante people like me aware! We need education & we need you to fund it with our money! We need research & we need it now!
Veronica, thank you for your passionate plea. Yes, we need Govt support. These children got diabetes through no fault of their own. We need to let the rest of the community know this.