Caitlin Delaney: I spoke at a Parliament House MP Thought Leader Dinner
Caitlin Delaney, Chair of the National Patient Advisory Committee and Patient-Partnered Research at
“Last week I spoke at a Parliament House MP Thought Leader Dinner. My 4th time speaking at the big house, but first in such an intimate setting.
I was honoured to represent the rare cancer community for Rare Cancers Australia. I explained how frustrating the current landscape is, just as I did for the recent Rare Cancers Senate Inquiry.
I discussed how critical the Australian Rare Cancer (ARC) Portal is for rare, less common and complex cancers. This Portal allows treating teams to collaborate with experts to guide treatment decisions through services such as whole genome sequencing of tumour tissue.
If mutations are found in tissue, precision oncology (aka targeted, or personalised, treatments) can target these mutations.
Finding genetic mutations in my tumours and subsequent targeted therapies is why I am still here. I want ALL patients to have equitable access to funded genetic tests, treatments and clinical trials, such as those provided through the ARC Portal.
I was privileged to speak alongside the powerhouse RCA CEO Christine Cockburn, a beautiful human (pictured left in second image), and the fierce rare and gynae cancer advocate, oncologist, scientist and ARC Portal founder Professor Clare Scott, who has a brain bigger than the globe (pictured right in the second picture). This woman could actually cure cancer!
Profssor Scott reassured me of how good HER2-ADC treatments can be, which is the next step for me given that my latest scan showed a lot of new spots in and on my lungs, in more lymph nodes, and one on the lining of abdomen.
I am feeling much more hopeful and will use the ARC Portal to help match me to HER2 clinical trials.
I urge every clinician to refer their rare or less common cancer patients to the ARC Portal. But government and industry also need to fund and support it. This Portal has the power to significantly improve outcomes for rare cancer patients, and those living in regional and rural areas.
Thank you Kevin MacIsaac for being my rock on Wednesday, and every day.” .
Source: Caitlin Delaney/LinkedIn
