Page 2061 - Week 06 - Wednesday, 7 June 2017
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My name is Sarah McGoram.
I’m a 38 year old mum living in Canberra Australia with my husband and our 10 year old son. When I was 18, I was diagnosed with Gastro Intestinal Stromal Tumor (GIST) and was told my disease had no cure and I was likely to have about one year left to live. There was no cure in 1996.
There is still no known cure 21 years later. GIST is a rare cancer with low survival rates. For almost 20 years, my doctors and I have been fighting this disease. There have been 250 days in hospital, 40+ blood transfusions, more than 60 CT scans, and 7 major operations. None of these treatments can cure the disease; they’ve simply been a fight against the symptoms while we wait for an effective drug to be developed.
We have a 10 year old son. He is a brave young boy dealing with the constant uncertainty of my disease. When we talked to him about my cancer two years ago he calmly replied, “Well cancer is bad. Now the doctors just need to find a medicine to make it go away so you don’t have to keep cutting the tumors out. Once they do that then everything will be fine! Don’t you think Mummy—that sounds do-able.” At 8 years old, he got it in one. It is as simple as that. All we need is time for the doctors to develop a drug that makes the cancer go away.
Over the past 10 years a number of drugs have been able to slow the progression of the tumors, buying me time. I have been lucky that these have been covered by Australia’s Pharmaceutical benefit scheme, but the drugs lose effectiveness over time. There are more drugs available but they are not funded by the PBS. The cost of all future treatment will need to be met ourselves. To put this in perspective, the average cost of the drugs to treat GIST is about $280 about per day or about $100,000+ a year. I have exhausted the approved line of treatment from the PBS. GIST has approved treatment of Imatinib and Sutent. These treatments have helped control my disease in the past. In 2015 we were told we had exhausted all PBS approved treatments to control my disease. The next line of treatment (Regorafenib) was not approved for GIST, so would cost about $10,000 a month. What I found heartbreaking is Regorafenib is approved by the PBS in Australia for other cancers. I could stand at the chemist next to someone with a different type of cancer, yet taking the same drug and it would cost me $10,000 and they would pay about $50. We were told it is unlikely there will ever be enough data for Regorafenib to be approved for GIST because it is so rare. With the current PBS funding model, it is nearly impossible for rare cancers like GIST to have enough data to become eligible for additional lines of treatment from from the PBS. The combination of having a low survival cancer and rare cancer means there are not many of us alive in Australia to provide adequate data. (In 2015 we were very lucky to be accepted in a compassionate access program by Bayer. They currently cover the cost of my medication saving us over $100,000 in the past year. This treatment is currently controlling my disease. We are also turning to crowdfunding/personal fundraising to provide future treatment options.)
I do not believe the current funding model for treatment of rare cancer and low survival cancers passes the common sense test. My next line of treatment is likely to be a return to Imatinib (my first line of treatment 2010-2012). There is evidence from clinical trials that returning to Imatinib (after a few years break) could control my disease. Imatinib is only approved by PBS as a first line of treatment for GIST. Therefore, if I start taking Imatinib again it will not be
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