Clinical Trials Benefit Rare Cancer Patients

Clinical Trials Benefit Rare Cancer Patients

GI Cancer Institute funded clinical trials are focused on bringing real benefit to real people — including immediate benefit for the people who take part.

Since 1991, our trials have helped save and extend lives, and improve the quality of life for people with GI cancers. Among other achievements, our clinical trials have improved life expectancy for people with gastro-intestinal stromal tumour (GIST) by over 500%, and those with select pancreatic cancer types by 30%. Clinical Trials have proven that for people with oesophageal cancer, adding chemotherapy and radiation therapy before surgery significantly improves survival rates; and identified a specific gene likely to respond to a particular type of chemotherapy, which means improving the treatment for bowel cancer.

Sarah McGoram (pictured with husband Tom) has survived far beyond expectations – over twenty years beyond a diagnosis of Gastro-Intestinal Stromal Tumour (GIST) that gave her eighteen months to live.

“The trials gave me access to drugs I wouldn’t otherwise have had access to”, says Sarah.

“And better information. The support from the medical team was invaluable — I was apprehensive at first but they explained clearly the pros and cons. It took a lot of pressure off and gave me a tremendous sense of hope.”

And Tom adds: “The more you engage with a science-based approach to treatment, the more you understand about your own condition and have opportunities to get the drug or treatment you need to help manage it.”

Dr Peter Grimison, a medical oncologist who collaborates with the AGITG on several trials, agrees: “Clinical trials are an extremely important way to make medical progress in cancer, particularly for rare cancers which are difficult to treat.

“Making trials available to my patients allows them access to new treatments that could be life-saving, but are otherwise unavailable or unaffordable.”

Even people whose prognosis is very poor can find comfort in being able to help others.

In response to this year’s Senate Inquiry – ‘Funding for Research in to Cancers with Low Survival Rates’, Sarah has been actively lobbying for change – here is an update in her words …

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 by 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.

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 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.

I do not believe the current funding model for treatment of rare cancer and low survival cancers passes the common sense test. Due to 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.

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

If you have a GI cancer (or are supporting someone who does), ask your doctor about whether there might be an GI Cancer Institute clinical trial suitable for you.

You can also help the GI Cancer Institute continue its research and clinical trials by donating here today.