Response 659926027

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1. I consent to my response being published on the Department of Health website, and acknowledge that it will be publicly accessible, including to people overseas. My consent is given in accordance with the following preference:

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Publish my response, including my name and the name of my organisation (if relevant)
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2. What is your name?

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Gino Iori

5. Are you of Aboriginal or Torres Strait Islander origin?

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No
Yes, Aboriginal
Yes, Torres Strait Islander
Prefer not to say

7. What is your interest in pancreatic cancer?

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I have / have had pancreatic cancer
I have a family member / relative with pancreatic cancer
I am a member of the public / general interest
I have a work-related interest in pancreatic cancer - Health professional – primary care
I have a work-related interest in pancreatic cancer - Health professional – specialist
I have a work-related interest in pancreatic cancer – Health professional - nurse
I have a work-related interest in pancreatic cancer - Health professional – allied health
I have a work-related interest in pancreatic cancer – Aboriginal and Torres Strait Islander Health Worker / Health Professional
I have a work-related interest in pancreatic cancer - Researcher
I have a work-related interest in pancreatic cancer - Health policy / administration
I have a work-related interest in pancreatic cancer - Consumer advocacy / support

8. If you have a work-related interest in pancreatic cancer, what type of organisation do you work for?

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Consumer organisation
Health or medical service / service provider
Aboriginal Medical Service / Aboriginal Community Controlled Health Organisation
Professional college, society or organisation
Research organisation
Government / government organisation
Non-government organisation
Industry
Other
If you are comfortable to tell us the name of your organisation, please include it here.
private interest, and I am working with 2 pancreatic research teams as a consumer on some of their projects to give community input into their projects

National Pancreatic Cancer Roadmap

12. What do you think are the most important issues to be addressed in pancreatic cancer in Australia?

All aspects are obviously important. Early analysis and effective treatment are vital in reducing mortality rates, and giving patients better life outcomes.

13. What do you think could make the biggest difference in improving outcomes for people with pancreatic cancer in Australia?

Increase in funding for pancreatic cancer research and treatment.

14. Are there unique or special challenges and considerations for specific population groups with pancreatic cancer?

The majority of pancreatic cancer patients die within a few months. There is very little support for them and their families, about the challenges lie ahead for them, and options available to them. In many ways pancreatic cancer is a forgotten cancer.

15. What do you think are the main challenges and opportunities in the clinical care of pancreatic cancer in Australia?

Effective treatment options for the majority of patients.

16. What do you think are the main challenges and opportunities for research into pancreatic cancer (including basic research and clinical trials)?

Funding, and keeping existing research teams working on their projects.

17. Do you have any other comments and / or insights from your own experience with pancreatic cancer that you think would be helpful to inform the roadmap?

Yes. My brother passed away from pancreatic cancer 9 years ago, and I was his carer during his battle. The doctor whom diagnosed him and informed him that he had terminal pancreatic cancer - stage 2. The doctor told him that if my brother was offered a clinical trail, and if the doctor was in his shoes, he would not partake in it. My bother wasn't even 50 years of age and was fit and other wise healthy. I tried finding out if there any clinical trials in Australia, or elsewhere in the world, but couldn't find any. In my opinion it was my brother only chance of survival, so I find it very strange that his doctor told him this.

I really believe that we need a roadmap for pancreatic cancer - to maximise our ability to improve the situation. We have some of the leading researchers of pancreatic cancer in this country, and I am personally working with two independent teams in Sydney as a "consumer", and I know how hard it is for them to maintain their research funding, and keep their project teams together.

I would be happy to contribute more to the development of the roadmap if required.