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Legislative Assembly for the ACT: 2017 Week 06 Hansard (Wednesday, 7 June 2017) . . Page.. 2062 ..

subsidised. I will have to pay approximately $10,000 a month for the exact same treatment that cost me $36 a month in 2010-2012. Imatinib controlled my disease in the past and there is evidence it could control my disease in the future, but because of the structure of the approval process combined with limited data available (due to GIST being rare with a low survival rate) we will have to pay over $120,000 a year to control my disease. This does not pass the common sense test and shows the challenges that patients of rare and low survival cancer face.

I’ve actively participated in every medical research clinical trial available in an effort to find a cure for GIST cancer. I am eager and ready for any clinical trial available in the future, but funding for trials for rare and low survival cancers is so tough. There are currently no clinical trials running that I am eligible for.

I am 38 years old and have had cancer for the majority of my life. Over the past 20 years I have seen the survival rate of many high profile common cancers increase significantly.

(Extension of time granted.)

I have not seen that happen with my disease or many of the rare and low survival cancers.

I would be grateful for the committee to consider restructuring the current funding for low survival cancers to enable provisions and provide equity for patients with rare cancers and low survival cancers like mine.


Sarah McGoram.

Madam Speaker, as an MLA and as health minister, you cannot help but be moved by Sarah’s story and bravery. As a friend, knowing her sense of humour, which is exceptional, and their bravery and compassion as a family, her story does not quite tell that side of it. But I wanted to read her story into the record this evening, and I also will be writing to our federal members and members of the committee to urge them to consider Sarah’s and many other stories to get some progress and some improvement into the funding for research into cancers are low survival rates.

MADAM SPEAKER: We wish you and your family well.

Belconnen Community Service

MRS KIKKERT (Ginninderra) (6.37): I rise today to express thanks to Belconnen Community Service, or BCS, which serves ACT residents in my electorate of Ginninderra. BCS coordinates with community members and other organisations to deliver a broad range of services to individuals and families in the Belconnen region, with the focus on supporting self-determination and reducing social isolation.

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