20 Years of Breast Cancer Advocacy

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.

Trained Advocates

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.

The Future

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!


On My Bipartisan Soapbox

I am not a political animal, but I do have a number of friends heavily involved in politics on both sides of the fence. An election is in the air, both at Territory government and at the Federal level so there’s a more than the usual amount of door knocking and pamphlets in my letter box happening.

Yesterday morning I met the Prime Minister, Malcolm Turnbull, at an informal coffee catch up down at the fabulously located Cornucopia Restaurant.

Tina MacFarlane, CLP Candidate for Lingiari, Michelle Hanton (me) standing.                Hon Malcolm Turnbull MP, PrimeMinister of Australia, Natasha Griggs MP, Federal Member for Solomon

It was interesting to watch the entourage at work, and the masses of camera’s that clicked away madly, especially around the babies! Admittedly, the kids were very cute and well behaved.

So what was I doing down there?

Well, the PM was with our current sitting member Natasha Griggs to promise a PET scanner for the Alan Walker Cancer Centre if they are re-elected. I was invited as a breast cancer survivor and the rest of the small group of guests were also those whose lives have been touched by cancer.

A PET scanner is a very expensive piece of equipment – millions of dollars – and we are the only jurisdiction in Australia without one which means patients need to travel interstate to access such diagnostic equipment.

The Opposition is similarly promising the same – so regardless of who wins the election, it seems like we’ll get the PET scanner. I certainly hope so.

The thing that I find so fascinating is that if both parties are able to promise a PET scanner, then how come it has not been provided to date?

I am not as closely involved in the advocacy world as I once was, so I am not sure of all the details around reasons why, but the one thing I do know is:

  • When people combine to make their voices heard things start to happen
  • Often it takes years of lobbying and advocacy to bring something to fruition
  • Advocates are vital and advocacy needs to be above politics

I did ask the PM if the felt the role of the advocate had made a difference to services. He confirmed that a patient centred approach was always the way to go – not exactly his words, more a case of me paraphrasing.

When I was diagnosed, almost 19 years ago, we had no oncologist, no breast care nurses, no McGrath Foundation and no Alan Walker Centre – today we have all of these things thanks to lots of lobbying and persistence all round by a vast number of individuals. Several of them have lost their battles and not benefitted from the improvements to services and conditions, but those that follow do.

From a personal perspective, the work I have done as an advocate has always been driven by the desire to see better services in place for my daughter and my nieces.

As we said back when we started our campaigning for breast cancer awareness (back in 1998), it’s not about us, it’s about those who follow down this pathway. It’s also about working in cooperation with others who will benefit from the same services.

Cancer is not about politics. It is bipartisan and does not discriminate.  Allocation of funding should come regardless of who wins office at the next election.

It is also my personal belief that we need to continue to develop advocates who will continue the fight to ensure cancer patients are provided with the best services and conditions possible.