This is ‘Our Moment in Time’

17 May 2023

Sunday the 14th of May marked 10 years since Hollywood star Angelina Jolie published her op-ed where she wrote about her genetic test and her preventative mastectomy. For a moment in time, it became the biggest story in the world. Advocates around the world worked day and night, taking agency over the narrative and sharing their own lived experience, including my family.

For a few days, I operated with very little sleep. Every TV station camped outside my house. Local families came to share their stories. It all took place at my family home. I was patched into the CVS Global Today show. Every TV station you could imagine, they covered it. It was unbelievable.

That moment in time changed the whole trajectory of my life and that of millions of other families around the world. It led to more research, more investment, the innovation of BRCA-targeted therapies, more hope, but not just enough.

A couple of years later, Angelina asked me to come and meet her and Brad and introduce myself. Feeling the absolute weight of every BRCA mutation carrier standing behind me, before I could even finish mumbling saying, my name’s Krystal, it’s really nice to meet you, she said, you can stop there. I know exactly who you are.

She reached out and wrapped her arms around me. That hug travelled the world 10 times over, and in that moment, it made me realise the true power of advocacy. Whether you’re the most famous woman in the world or a Mum from the Northern Beaches, our stories have power. They help people from all walks of life. They’re often the reason people take action.

Ten years on from Angelina’s story, a message on the power of genomics, we can all now fully appreciate what awareness it brought, but it also clearly shows us how we tend to squander opportunities for change. No matter how celebrated these moments are.

I am the eternal optimist, but my family was genetically tested in 2001. More than 20 years later, we are still talking about the same issues that we were back then. We’ve been advocating for a genomics revolution that just hasn’t come, and that has taken its toll not only on me but on families across Australia facing a whole raft of health conditions.

We are far from having timely and equitable access to genetic testing. The criteria to access public testing is challenging at best. We have failed to train and recruit enough of a workforce to support genomics. We haven’t addressed the insurance discrimination issue. We still haven’t created a central genomic register, and we continue to miss many opportunities to test at the right time. We’re trying, but from prevention through to precision medicine, we’re still not there.

I don’t want us to continue down this path anymore. Angelina gave us a moment and we didn’t take it and run with it – we talk about it and we still just talk about it.

If realising the full potential of genomics is like getting to the top of Mount Everest, we haven’t even packed our bags. And I know change is not easy, especially in our complex health system, but it is possible. We just need to be brave. Being brave just means holding your fear in one hand and your responsibility in the other. Genomics is the greatest gift this generation will ever see in healthcare, and we have a responsibility to each other and the future of our country to prioritise it.

I truly believe together we can ensure genomics is firmly placed on the agenda and the changes that patients of today and tomorrow need are prioritised. And it’s not just a government issue, as much as we want to make it, it’s an everyone issue. It’s a full healthcare system issue and we can’t let change continually be strangled in red tape and bureaucracy.

There are huge economic benefits and long-term health benefits that genomics can bring, not just for a lucky few like me – it can help every Australian. I have buried young people, mums and dads from a completely preventable cancer, and they found out just before they died that one test could have given them knowledge. They passed that knowledge onto their family, but it wasn’t quick enough for them.

I have seen people on waitlists for genetic tests develop cancer before they get seen. I’ve seen many people miss out on the right treatment for their cancer, and we can do better and we need to do better.

That’s why I’m saying now I will not let another 10 years go to waste on my watch. I want you to be part of the Genomics Coalition, and I’m telling you this Genomics coalition isn’t about reinventing the wheel. I just need some people to help me so I can make a lot of noise and I can change things.

I want a team of like-minded people behind me who want the same things and believe that change is possible. We have the data, we have the economic modelling, enough reports to last us a lifetime. The eternal optimist in me isn’t giving up now. I want my Mum to see the change my family has been fighting for for over 20 years happen.

Every woman in my family in living memory has had breast or ovarian cancer, most dying. My Mum is the only survivor. I was the first one to change that; at 25 I had my breasts removed. At 33, my ovaries and fallopian tubes. Shortly after that, every other bit that makes me a woman removed as well. I literally lack every part of me that deems me a woman but I still feel like a bloody strong one. I feel like the luckiest person in the world and I really am. I’m reminded of that every day, speaking to the patients that I do. I had choice. A lot of people don’t.

Genomics to me is ultimately just a story of choice. My story of choice: choice in treatment, choice in prevention, choice in disease management and risk reduction, and sometimes choice in even just knowing. Right now there are many factors at play that make that choice difficult or damn right impossible. But it doesn’t have to be.

A genetic test gave me knowledge, and because of science, it was given to me at a moment in time where I could do something about it. I’m alive because of one simple test. I’m alive as a reminder that with the gift of knowledge you have choice, you have hope, you can have answers and you can defy your destiny.

We just need to make sure it’s accessible for everyone at the right time to ensure precision medicine and prevention. And we just need to give patients, their families and their healthcare team the choice at the time that’s right for them.

This is our moment in time to do it. So let’s just bloody get started and pack those bags. Trip’s gonna be hard. Everest isn’t easy. Netherlands is at the summit so come on, we’re competitive as Australians so let’s get it done!

*This is the opening speech from ‘Our Moment in Time’, held in Sydney on Monday, 15 May 2023. To join the Genomics Coalition, scan the QR code, or click here.