The Stella Women Series: Empowering Lives and Saving Futures – An Inside Look at Pink Hope’s Mission

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Cancer is a formidable adversary, but so is the spirit of those determined to fight it. In the heart of Australia, there’s an organisation that’s not only battling cancer but also transforming the way we approach it. Pink Hope, a patient-focused organisation, has made it their mission to support individuals in understanding and reducing their risk of hereditary cancer. They do more than just provide information; they empower people to take charge of their health and offer unwavering support throughout their journey.

Pink Hope’s commitment is unwavering, driven by a vision to empower all Australians to understand and act upon hereditary cancer risk. Their approach is multifaceted, collaborating with healthcare providers to ensure seamless transitions for at-risk individuals and advocating for earlier diagnoses, risk reduction, and improved treatment options.

Their current campaign “Know Your Normal” is asking you to discover the power of self-awareness by embracing routine breast self-checks, which will empower you to become an expert on what’s normal for your breasts. This knowledge enables you to quickly identify any changes that could be potential signs of breast cancer, putting you in control of your health.

By signing up for their automated Self-Breast Check, you’ll receive a gentle reminder every 6 weeks, allowing you to understand your “normal” at various times of the month. It’s a simple yet crucial step in proactive health management.

Pink Hope strives to create open discussions about family health history, breaking down the barriers that often surround this topic. They’re not just an organisation; they’re a lifeline for many families facing the challenges of hereditary cancer.

Meet Sarah Powell, CEO of Pink Hope

Can you take us on a journey from your first encounter with Pink Hope to becoming the CEO?

I was diagnosed with breast cancer when I was 29 years old, and later found out that I carry a BRCA1 gene mutation which predisposes me to breast and ovarian cancer. Back then (17 years ago), genetic testing wasn’t as common as it is today, so I wasn’t tested when I was diagnosed as I have no family history of these cancers. I also wasn’t aware at the time that 1 in 40 Ashkenazi (Eastern European) Jewish people carry a BRCA gene mutation, this was relevant as my dad’s family are Jewish from Lithuania.

The BRCA1 diagnosis was particularly challenging because I felt the weight of possibly passing it on to my daughter who was two at the time, and any future children I might have. The decisions that need to be made with genetic mutations are life-altering, and we often hear within our community that making the decision for risk-reducing mastectomy or oophorectomy (removal of ovaries), is the hardest part, coupled with the heartbreak of seeing generations in the one family affected by cancer.

Fortunately, I’ve been cancer-free for 17 years now. After I found out about my genetic mutation, I found Pink Hope and became very involved in the community. I organised an annual fun run where we raised 100k over 6 years, and supported their events, often as a speaker sharing my story. In 2020 our founder Krystal Barter decided to step down and that is when I took over the role as CEO of Pink Hope.

How has your personal story and history with breast cancer influenced how you lead the Pink Hope team?

My personal journey with breast cancer and the BRCA1 gene mutation allows me to deeply empathise with our community. I connect with people who have similar stories, often reaching out to talk to them and share my experience. This passion and understanding drive me to continue the great work we do at Pink Hope ensuring a better future for families like mine.

Can you provide insights into the importance of early detection, regular screenings, and genetic testing in managing breast cancer risk?

Breast cancer 5-year survival rates in Australia are now around 90% but this is dependent on the cancer being detected early however in Australia we have excellent screening programs. Our “Know Your Normal” campaign emphasises the importance of regular self-breast checks and knowing your body. We want women to undertake a holistic approach to their regular self- breast checks and get to know their bodies so they can recognise changes and see a doctor when something is out of the ordinary.

Investigating your family history of cancer is also important and if you think there might be something going on in your family, talk to your GP or local Family Cancer Clinic. The Pink Hope website has heaps of information around understanding your family history but people can always reach out to us if they have any questions or need more information.

Pink Hope has grown a lot since the beginning. What’s your big-picture vision for the organisation, and how do you plan to make it happen?

Pink Hope has consistently centered its efforts on hereditary cancer, making us the sole charity in Australia dedicated to breaking the cycle of cancer and encouraging conversations that save lives. While there are numerous charities providing support to individuals already affected by cancer, our primary mission is to fill the critical gap between the patient and the healthcare system by focusing on risk reduction and early detection of cancer.

We also place a strong emphasis on primary care education, including general practitioners and practice nurses. It’s concerning that some healthcare providers have been known to tell patients, “You’re too young to get cancer.” This underscores the importance of prioritising ongoing training within primary care, helping them to understand hereditary cancer and to be a referral pathway for their patients.

In addition, we offer a range of resources and a supportive community that empowers individuals to make well-informed decisions about high-risk screening, risk-reducing surgery, and other preventive and early detection measures. It’s concerning that, in some cases, women within our community who are confirmed carriers of a genetic mutation are provided with nothing more than informational leaflets and a brief 30-minute appointment to make such life-changing decisions. We firmly believe that this level of support falls short of what is needed for these families. Finding out that they are at high risk of cancer is just the beginning of their journey.

Our commitment extends to education, ensuring that individuals have access to information and resources empowering them to make proactive choices about their health. Patients should be an equal partner in their healthcare journey, and we want to support them to do this.

 We are also actively engaged in advocating for legislative changes, particularly regarding insurance discrimination. There’s an urgent need for reforms to allow individuals to access life insurance without bias based on genetic testing results. We’re collaborating with Monash University and other partners to drive progress in this area.

Recently, we’ve taken our advocacy to Parliament House, engaging with Members of Parliament to address the issue of delayed life-saving mastectomies. It’s a pressing concern that elective surgery scheduling can result in women developing cancer while waiting for their crucial procedures.

We also recognise the shortage of genetic counsellors in Australia. Private genetic testing is an option, but the lack of federal government funding poses challenges. Pink Hope is committed to supporting and safeguarding individuals’ mental health while they navigate these complex decisions.

Balancing work, advocacy, and personal life is quite the act. How do you manage to keep all the plates spinning while also keeping an eye on your health and family?

I don’t… well, I try… Balancing everything is challenging. I separated two years ago, and co-parenting while managing work, my kid’s sport and my rescue dog is a juggle. Staying organised, rising early, and making the most of my mornings help. I also work on planes to maximise my time. Learning to ask for help when needed has been crucial.

Collaboration is the name of the game in the non-profit world. Tell us about a partnership or collab that has supercharged Pink Hope’s mission.

Collaboration is essential for us. Working closely with researchers and organisations like kConFab, who focus on familial breast cancer research, has been immensely valuable.

We were lucky enough to receive a grant to fund private genetic testing for 50 people in our community. We worked with Eugene to provide the counselling and testing for these people, and it’s a program we are very proud of. We would love to continue this program if we can source further funding.  We allocated the funds to those who fall outside of the strict MBS funding criteria or those facing significant wait times in the public system. Enabling them to access a genetic test at no cost and relatively quickly was very impactful for these people.

Something I’m incredibly proud of is being asked to be the lead on a patient-authored manuscript researching the barriers to genetic counselling and testing for women with breast cancer in 9 countries across the world. I’m heading to Madrid in October to present the abstracts at ESMO (European Society for Medical Oncology). Our goal is to advocate for our governments for all women who are diagnosed with breast cancer to be offered genetic counselling and testing.

Lastly, tell us about your leadership style – what’s the secret sauce for inspiring your crew to rally behind Pink Hope’s mission?

My leadership style draws from my background in banking and event management, placing a strong emphasis on flexibility. Instead of fixating on clocked hours at a desk, I prioritise achieving tangible results. It’s interesting to note that our team is comprised entirely of women, not necessarily by design, as we haven’t had many male applicants! Trust, laughter, and fun play a pivotal role in our work culture.

Given the weightiness of our mission, we also foster a culture of mutual support and regular check-ins among team members, Teams have been amazing for that, we just jump on a video call when we need a little support or just to see each other’s faces. We are a team of just 5 and 3 of those women work part-time so it’s important we check in with each other as much as we can.

Meet Robyn Smith, Programs Manager of Pink Hope

Can you tell us more about the moment you received the news about having a BRCA2 gene mutation and the impact it had on you and your family? 

Like many others, I have a strong family history of cancer. My Grandma died at 49 of breast cancer, my mum died at 66 of ovarian cancer and my young cousin has just finished treatment for her breast cancer. It was when my mum was diagnosed with ovarian cancer that we undertook genetic testing for the BRCA2 gene mutation.

A simple blood test would tell us if we carried a high risk or not. It turns out that I and 6 others (men and women) in my family carried the mutation. Carrying a BRCA2 gene mutation means you have up to 70% lifetime risk of breast cancer, and a 15% lifetime risk of developing ovarian cancer, and for men, there’s a 25% lifetime risk of developing prostate cancer. Often these cancers occur earlier and can be more aggressive.

Even though carrying a BRCA mutation can mean life-impacting surgeries for women, we are so lucky to have the information that women in our family before us didn’t. We can make informed decisions about managing and reducing our risk of cancer. The majority of my role at Pink Hope is about educating and supporting informed decision-making in this space. The hardest part about carrying a BRCA2 mutation is that this doesn’t stop with me, I worry about the impact this could have on my kids.

For the readers who may not be familiar with the BRCA2 gene mutation, could you provide a brief explanation of what it is and how it relates to the risk of developing breast cancer? 

Everyone carries a BRCA1 and BRCA2 gene. A mutation comes if there is a break in the gene. Essentially, it’s a gene fault or mutation. A gene mutation can be passed on to a child (boy or girl), and each embryo has a 50:50 chance of having a mutation. So, it’s not 50% of your family will have a mutation, it’s each embryo has a 50% chance of having a mutation. So, your family could have 10 from 10 people with a mutation or 0 from 10. My family is 7 from 11.

My mutation was passed down from my mum, and she got it from her mum. The best way to manage risk is regular screening or removing your breasts, fallopian tubes, and ovaries. Women who carry a BRCA mutation face life-changing (impacting both physical and mental) surgeries, including early menopause. It is recommended to have these surgeries at around 35 – 45 (depending on the mutation).

In a previous interview with the Sydney Morning Herald, you touched upon the decision-making process regarding preventive measures like mastectomy and the emotional challenges tied to it. Could you expand on your approach to navigating these critical decisions, and do you have any guidance to offer to individuals facing similar choices? 

Having a gene mutation carries many risks and each person will make decisions about managing their risk based on the level of risk they are willing to accept and their values/preferences. Everyone makes different decisions with the information they have at the time and that is perfectly fine. These are big decisions. Removing an important body part has not only physical implications but also emotional. I had a few years to think about these decisions and I always had in my mind that I’d remove my breasts by the time I was 40….and that’s what I did.

Three months after my mum died of ovarian cancer, I had a risk-reducing mastectomy. I think the lead-up was worse than the surgery. The advice I would give to someone facing a tough decision like that is to gather all the evidence-based information you can find, seek medical advice, and seek more. Find someone who is ‘your sort of people’, someone who is a good fit. Talk about your decision as much as you want and don’t be afraid to seek professional help if you want to bounce your thoughts off someone. Find a community of supporters and know that it’s OK not to feel OK about a huge decision like this.

Your journey with Pink Hope started as a volunteer, and now you’re the Programs Manager – that’s quite a leap! Can you spill the beans on what inspired you to make that move? 

I have loved being part of the Pink Hope community ever since I found out about my gene mutation over 10 years ago. It was the only community of people who really ‘got it’. I had been working in a health promotion role at the Heart Foundation for about four years when Sarah let me know the Program Manager role at Pink Hope was available. As soon as she told me about the role, I was hooked. It was such a great fit for me. Advocating for and supporting a community that I am part of is so rewarding. I am privileged to do what I do and having first-hand experience also makes us pretty good at what we do (if I do say so myself).

You recently took part in our #ittakeboobs campaign, could you share what specifically resonated with you in the campaign’s message and inspired your decision to be a part of it? 

What a privilege it was to be part of such a powerful and norm-challenging campaign. It was really by fluke that I ended up in it, but I am so grateful to Stella for pushing to ensure there was a breastless woman in the #ittakesboobs campaign. Inclusivity and moving away from the focus on physical characteristics are such important and essential steps forward.

I am keen to normalise being flat (after a mastectomy) and if my inclusion in the campaign makes just one other flat person feel a little more comfortable in their skin, then my job is done. What resonated most for me was even though I was playing a ‘role’ in the ad, what you saw was genuinely me. No acting, just unapologetically me, scars and all.

Women should be able to make informed decisions about their health without having to think about societal norms and other pressures. I am a keen advocate for informed consent and ensuring patients have all the information they need to make informed decisions about their health. My experience with my initial (and short) reconstruction (with breast implants) after my mastectomy, has led me to be part of a research team investigating adverse events from breast implants.

I am also part of a newly established research team investigating the experiences of women who go flat after a mastectomy. Both of these areas of research essentially challenge mainstream ideals and maybe that’s why I was such a great fit for the ITB campaign – because I like challenging the norms.

In light of your story and the increased awareness around genetic testing, what changes or improvements do you hope to see in terms of breast cancer prevention and support in the future? 

I would love to see our government invest more money into preventive health. It seems like such a simple concept, to invest money to prevent disease, rather than spend more to manage and treat people after they get a disease. I hope that science and research continue to improve so that my daughters don’t face the same risk-reducing surgeries that I’ve endured. We are so lucky to have options and information, I hope people feel empowered to have genetic testing and learn more about themselves.

One critical issue that warrants attention is the current practice by Australian life insurers, who can use genetic information to discriminate against or deny coverage for individuals seeking policies worth around $500,000. I advocate for government intervention to enhance industry regulation and protect individuals seeking genetic testing, ensuring they can proactively manage their health without the fear of life insurance implications.

Together, we can strive for a future where breast cancer prevention and support are not only improved but also more accessible and inclusive for all.

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