Caitlin Delaney: Yet I am one of the lucky ones – on paper I shouldn’t be here

Caitlin Delaney, Chair of the National Patient Advisory Committee, Patient-Partnered Research at VCCC Alliance, shared on their LinkedIn:

”8th of May was World Ovarian Cancer Day, and 9th of May was (PET) scan day – a day which comes around way too often in my household! For over 7 years now I have been living with incurable, stage 4, clear cell ovarian cancer, a rare and nasty form of the deadliest women’s cancer, and have been on non-stop treatment (aside from a 6 month break). Yet I am one of the lucky ones – on paper I shouldn’t be here! Yesterday, like every day, I think of all those loved ones who have not been so lucky.

Genomics provided my family and I that ever-elusive hope. Genetic (somatic) testing of my tumour tissue enabled me to access life-extending immunotherapy treatments off-label, and will enable me to access the next treatment if scan results show disease progression. I want ALL ovarian cancer patients to have access to these tests and potential treatments to ensure that no patient is left behind.

To mark this day I want to share some of the words I spoke earlier this year at the Senate Inquiry into Rare Cancers. These words highlight a few of the challenges of living with ovarian cancer, and rare or less common cancers.

‘I am so grateful to still be here, despite the odds! But I have had to work hard not to slip through the cracks. A clinical scientist myself I am lucky to be health literate – but most are not so lucky. These patients contact me, desperate for hope and advice. I watch some of them die much earlier than they should. This is the tragedy that plays out in our healthcare system every day.

When diagnosed in 2017, aged 39, I had just started a family with the man of my dreams, and my youngest daughter had just turned two. Having worked in healthcare my entire career, I knew when diagnosed that I had to ask what IS possible, and self-advocate. But what I didn’t realise was how disempowered and vulnerable cancer patients are. And that not ALL cancers are created (or treated) equal! You don’t have to look far to see that the healthcare system discriminates against rare cancer patients – we are often not candidates for clinical trials, or PBS listed drugs which could prolong life. There are simply not enough people to warrant a trial, or to gather ‘meaningful data’ – by definition there never will be!

I have witnessed firsthand, and via other patients through my advocacy work, that accessibility to latest genetic tests, treatments and clinical trials is not only dictated by a patient’s type and stage of cancer, but also by where they live, their background, age, bank balance, who their treating oncologist is, and how empowered and informed the patient is. Access to life saving tests and treatments should be a CHOICE for patients, not a PRIVILEGE or a postcode or tumour stream lottery.

This inequity in access to genetic testing and PBS listed medicines and trials is not just unfair, but also grossly unethical in my mind.”’

Source: Caitlin Delaney/LinkedIn