Krystal Barter

Inspiring others to cope with genetics’ lottery

Krystal Barter describes her body as “a lemon’’. If it were a car, she’d ask for a trade-in. But here’s the thing – for all its faults and failings, Krystal Barter has managed to make something extraordinary out of her lemon that has helped change attitudes among hundreds of thousands of Australians.

Krystal Barter, founder of Pink Hope Community

In many ways, Krystal’s story is well known, widely publicised and discussed – identifying she had the BRCA1 gene fault that is a predictor of breast, ovarian and pancreatic cancer; having the radical surgeries that reduced the threat, Krystal realised that whilst there was plenty of support available to women who were undergoing treatment for breast or ovarian cancer, there remained little to no support for women who opted to go down the prophylactic route, when they posed a significant risk of developing it at some stage in their lifetime. From this personal and isolating experience, Krystal decided no woman or family should ever have to go through what she did, alone, and so she began Pink Hope Community, a not-for-profit organisation to help support, guide and educate women walking a similar path.

Through her ten-year journey driving major advocacy programs for greater genetic screening, awareness and support for families at risk of a genetic mutation, Krystal - a member of Philanthropy Australia’s (PA) New Gen network - has become a powerful force and symbol for change, recognised across Australia for her role in helping many women confront the problem. It even included meeting Hollywood star Angelina Jolie, who has travelled a similar road.

But that public profile only hints at the deeper challenges Krystal has dealt with and continues to deal with. Her body, she confesses, still lets her down. Five years ago, she had surgery to remove her fallopian tubes and ovaries to reduce the risk of ovarian cancer. Last year it was the scourge of endometriosis and Krystal is still dealing with the aftermath. But her sense of purpose, her determination and pure zest for life have enabled her to continue to push through the physical hurdles to continue to strive for change.

“I’m quite strong,’’ Krystal says. “I have so many health issues: every year, there’s been major surgery. I’ve had silicone leaking into my body…[but] I’m so passionate and determined. The one thing I have that’s strengthened me is the perspective that there are others dealing with worse things than me. That, and I love my family.’’

Her parents live next door and her Mum will ring if she thinks there’s a light still on late in her daughter’s house. “And I’m a grown woman with three children," Krystal says. However, it’s family in another way – and its genetic pattern - that is at the heart of Krystal’s story.

Her grandmother and her mother were both diagnosed with breast cancer. “Nan called it the lottery of death,’’ Krystal says, “which is pretty morbid but, in some ways, accurate.’ More than 20 women in Krystal’s family had been diagnosed with breast or ovarian cancer. Krystal was 14 and her mother 36 when her mum learned she had breast cancer. Krystal recalls that her own response was to adopt a “victim mentality’’, a perspective wildly at odds with who she is now.

At 23, Krystal learned she had the potentially lethal gene. At 25, she had her breasts removed. By the time Krystal woke up from her operation, there was a 60 Minutes film crew waiting for her, while she nursed a vague plan to establish an organisation that would support others going through the confronting choice she had just made.  

“I actually didn’t want to start my own not-for-profit,’’ Krystal explains. “I knew how complex an NFP can be. And I obviously had a lot of health issues to deal with at the time.’’

But she worked alongside mentor (former) Breast Cancer Foundation CEO Sue Murray for three years and through that time Pink Hope emerged.

“I’m a great believer in working with NFPs, because if you can collaborate there are so many organisations in a particular field,’’ Krystal says. “But you have to be really savvy – to develop new relationships and diversify some of those partnerships.’’

Krystal Barter

And as anyone who has run an NFP knows, the time commitments can be extensive and exhausting. “I was the bookkeeper, in charge of public relations. I was the program manager…I wore every single hat.’’ The early hard work paid off and now 10 years on, Krystal has been able to hire a CEO, Hannah Heather, who enables her to take a step back to concentrate on the bigger picture and to share her knowledge, experience and insight to help other NFP’s thrive within their own space, grow their voices and create the change they want. “So many organisations are out there, just like Pink Hope, to create change, advocate for the patients, and start meaningful conversations yet so many of them just don’t know where to begin,” she says.

When it comes to her role with PA, Krystal has a modern approach to the age-old stigma associated with philanthropy. “Any philanthropy is good if it helps people. The old idea of philanthropy is pretty much that it’s an elitist activity, done by people with a lot of money. I have no money. I just have passion, dedication and a network of people,’’ Krystal says. “Philanthropy is not about how much money you can give away…but it does have to be ingrained in us as humans. Humanity, humility and kindness need to be on the agenda.’’  

Krystal knows that the cause she is working for will not end with her. She has three children, so she is well-aware of the genetic challenge that they too will face. Her work has been centred on removing barriers for those who want to have the test to find out if they carry the gene. Thousands of those risk assessments have been done through the Peter MacCallum Cancer Centre and last year, insurance companies were prevented from discriminating on applicants on the grounds of genetic testing results.  Each day, Pink Hope website has 250,000 connections. It amounts to a significant change in attitudes and practices around not only genetic testing, but broader issues faced by the community of families who live with a high-risk mutation from treatment options, fertility, preventative routes and isolation.

Krystal remembers all too well the conversations she had with health professionals who told her they could help her when she had cancer but not before. It might have been well-intentioned and a reflection of reality, but it did nothing for Krystal’s peace of mind. But she was driven on by the thought of her family and the hope of a different future. “I have to see myself as lucky,’’ she says, “because it’s unfair to everyone else who has gone before me and not had the chance to save their life the way I have been able to.’’

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