2018 marks 20 years of involvement with breast cancer advocacy for me.
In Australia today we have the McGrath Foundation, Breast Cancer Network Australia (BCNA), National Breast Cancer Foundation (NBCF) and Dragons Abreast Australia (DAA). We’ve come a long, long way in the last 20 years.
Back when I was diagnosed none of these organisations existed.
All of this has been made possible through breast cancer advocacy. The power of the collective use of voices of those affected by breast cancer to campaign, lobby and petition for change to happen.
The breast cancer movement took its lead from the highly successful AIDS lobby group and translated it into the breast cancer cause.
I was fortunate to be chosen to undertake the Advocacy & Science Training provided by the National Health & Medical Research Council (NHMRC) – it was intensive and at times my poor little brain struggled to cope.
BUT….it was highly valuable.
It gave us, as advocates, the skills needed to lobby and to ensure we were able to represent consumers in a logical, rational and educated way rather than be operating on a purely emotional basis. Facts always win the argument!
Where am I going with this?
For a little while now I have been a tad concerned that the breast cancer advocacy movement is losing momentum.
I mean, there are so many great facilities these days that are taken for granted by those who access them. Services that what we fought for.
Not for ourselves but for others who would come down the path after us. Those who had yet to be diagnosed with breast cancer….like my young daughter and my nieces who are surrounded by a family history of this insidious disease.
It’s GREAT that we have all the services BUT here’s the thing…
Unless we keep our eyes on the ball they could just vanish. Some already have – almost without a murmur.
Why is that?
In my opinion, and you may like to disagree – that’s quite fine…we have mainly forgotten, and many have never understood how difficult it was to gain those services.
The Survivor Story
The survivor story is powerful. Couple that with advocacy training and you have an unstoppable force to promote breast cancer awareness and education by personalising the statistics.
I am blessed to be a survivor, to have been in the company of wonderful pioneers of the breast cancer movement – Lyn Swinburn AM, Sally Crossing AM (dec), Anna Wellings Booth OAM (dec), Susan Tulley, Penny LaSette and Tere Jaensch (dec), and Carol Bishop.
It is important for survivors to lend their voices (not just money), to ensure that breast cancer remains firmly in the public eye until such a time a cure is found.
The pioneers and advocates from those early years are growing old. After all, it’s been 20 years for me, and more for each of those wonderful women I’ve named above.
A new generation of consumer advocates is needed. I am worried when I hear women say “We are not interested. We just want to get on with our lives.”
I can appreciate that sentiment.
But imagine if all of those pioneering advocates had not spoken up, had not taken those first steps? We would not have what we have today.
For some years now I’ve been worried about consumer advocacy – or to be more precise the apparent lack of successors and lack of interest by many consumers.
I guess because I have an established profile people tend to call me when they need something or want to pick my brains. More often than not, it’s to alert me to something that is not as it should be at a clinic, chemo unit, doctor etc.
My response is always to urge them to speak out and make their voice heard. To talk to the staff, to document their concern, to contact their local advocacy group. and if necessary to lodge a complaint.
Unfortunately, most choose not to. I hear things like “Well, my treatment is over/almost over now. So I don’t really need to worry about it.” or “I really don’t feel confident saying something”.
I worry about what service might be lost next. After all, every cause is a good cause. The dollars flow where the demands exist and where the spotlight is shone. There is only a finite amount of money to go around for research and services.
As we all know, change only happens when someone sets the ball in motion. I am no longer at the coalface – I believe we need new blood, that change is good. New faces need to be encouraged to step up.
So what am I going to do about it?
I’ve learnt a few lessons along this journey of life. And the biggest one is if you want something to happen you need to be prepared to take ACTION.
SO…the action I am taking is this…
Facebook and social media did not exist back when I was diagnosed – yep 20 years ago was the times of the dinosaur. Although I did have a mobile phone – a Motorola.
But this dragon has learnt to embrace the opportunities that new technology offers us.
What I’m doing from now until the end of October – Breast Cancer Month – is sharing, on Facebook, a trip down Memory Lane – 20 years of breast cancer advocacy based on my experiences, memories and contributions from some of the amazing people I’ve met along the way.
I hope it will stir up some attention and inspire another generation to take up the advocacy mantle. Along the way, I’ll be sharing some great memories of the people and places that have influenced me and have shaped the breast cancer movement. It was hard work but it was also lots of FUN!