Spreading the pink hope

breast cancer

In the September issue of Retail Pharmacy Assistants e-magazine, we spoke with Sarah Powell CEO of Pink Hope, a patient-focused organisation committed to supporting people to reduce their risk of hereditary cancer.

Pink Hope helps people to understand their risk of developing hereditary cancer through awareness and services.  

What are the mission, values, and goals of Pink Hope? 

Pink Hope is Australia’s only patient-focused organisation supporting families with hereditary cancer. We aim to break the cycle of cancer in these families and encourage conversations that save lives. 

Can you tell us a little bit about yourself and your journey to becoming CEO at Pink Hope?

I was diagnosed with breast cancer when I was 29 years old and went on to find out I have the BRCA1 gene mutation. I was involved with Pink Hope for many years, fundraising and sharing my story at events to raise awareness of hereditary cancer. I took over as CEO in 2019 after Pink Hope’s founder Krystal Barter stood down.

In your journey as the CEO of Pink Hope, what are some of the most impactful moments or milestones that you have experienced in leading the organisation? 

  • Building the team from two people when I started to a team of dedicated and passionate women who want to make a difference for our community.
  • Earlier in 2023, highlighting to the government at Parliament House the issues faced by our community, including significant wait times for prophylactic surgery, with some women developing breast cancer while waiting.
  • Developing a webpage dedicated to primary healthcare providers so there is a ‘one-stop-place’ for them to go to support their hereditary cancer patients.
  • Lead author on a patient-authored manuscript discussing the barriers to genetic testing and counselling in nine different countries. I’m going to be presenting the abstract at ESMO (European Society of Medical Oncology) later this year.

Can you tell us about hereditary cancer and why awareness is so important? 

Around one in 400 people carry a gene mutation that predisposes them to cancer. In Ashkenazi (Eastern European) people this increases to around one in 40 people.

Women with a BRCA1 mutation for example have a very high risk of developing breast cancer in their lifetime (70 per cent) and ovarian cancer (45 per cent) and men have a higher risk of developing prostate cancer (20 per cent).

It’s important for people to investigate their family history of cancer and talk to a healthcare professional to be referred to a family cancer clinic if necessary.

What are the key messages regarding hereditary cancer for the general community to be aware of?

Investigate your family history of cancer, particularly breast, ovarian and prostate. Know there is a link between breast, ovarian and prostate cancer.

Investigate your family history of cancer with your GP and, if necessary, get a referral to a family cancer clinic so you can understand your risk and what options you have to reduce that risk.

What services does Pink Hope offer to the community and to support those who may be at risk for developing cancer? 

  • Support and connection through private online support groups and face-to-face community catchups.
  • Evidence-based information through our website and other digital platforms.
  • Educational programs, campaigns and events.

Can you tell us a bit about the Pink Hope Free Genetic Councillor? 

People can submit a question through the form on our website and a trained genetic counsellor will provide a response. It is an easy way to access advice and guidance.

What events, research, and campaigns have Pink Hope been involved in? 

We run many events each year aimed at supporting and educating families with hereditary cancer as well as community catchups so people can connect and support each other. We hold education events and separate, less formal catch-up events for community members.

We support research by helping recruit for many studies and work closely with many universities and researchers across Australia.

We create and deliver digital campaigns aimed at empowering people to make informed decisions when it comes to their hereditary cancer health.

Know your normal is a recent example of the sorts of health campaigns we undertake. We are currently finalising a campaign raising awareness for triple-negative breast cancer, which will be launched later in September.

How can retail pharmacy assistants get involved in spreading awareness about the work you do? 

Pharmacy assistants can ask their patients about their family history of cancer and let them know about Pink Hope if anyone does talk about hereditary cancer.

If patients talk about family members being affected by breast, ovarian or prostate cancer, this could trigger a pharmacy assistant to ask more questions about family cancer history.

Also, the use of menopause medications/treatments in a younger woman may indicate they have undergone a risk-reducing oophorectomy (removal of ovaries) potentially to manage ovarian cancer risk – another indicator that a woman could carry hereditary cancer risk.

Pharmacy assistants could undertake an in-store or online health promotion focusing on hereditary cancer risk.

To learn more: pinkhope.org.au/home