As you are aware my work involves working across all tumour types, as I see so many issues common to us whichever cancer we face. My experience has shown me that certain cancers are causing some unique problems for us, as it seems that for both males and females, there appear some taboos about dealing with these. Many are detected far too late, which means they are so difficult to treat. Of course we all have our own ideas about how to improve things, but I am delighted to be able to feature today, a very unique perspective from Athena Lamnisos, who is the CEO of The Eve Appeal. In this fascinating piece, Athena shares her own views and gives us an insight into some of the obstacles in the charity world.
“Now that we’re now two thirds of the way through Gynaecological Cancer Awareness Month I thought that it was an ideal time to discuss why it is so important for all of those in the cancer community to raise awareness, but more specifically the reasons behind why I personally feel that medical research and innovation can have a significant impact on women’s cancers.
As the Chief Executive of women’s cancer charity The Eve Appeal, one thing is very clear to me – gynaecological cancers don’t discriminate; they can affect women at any age. Nearly 20,000 women in the UK are diagnosed with a gynaecological cancer every year, and almost 8,000 die within five years.
So the statistics are brutal and what’s really tragic is that so little has changed for some of the gynae cancers, compared to the progress which has been made with other health conditions. Deaths from lung cancer and heart diseases have halved since 1970. Over the same period of time, deaths from breast cancer have gone down by 40%. If you’re diagnosed today with ovarian cancer, your prognosis is pretty much the same as it would have been in 1970. Deaths from ovarian cancer have decreased by less than 2%.
So these are the statistics that we’re campaigning to change – yes, through raising awareness, but the bulk of our income goes towards funding medical research.
I’ve worked in the charity sector for over three decades, both as a senior manager and as a trustee. When I was looking for the right CEO position, I searched long and hard for a charity that had a clear and razor-sharp strategic purpose. There is no shortage of national cancer charities, and they can often trip over themselves vying for media space and attention. There are two for bowel cancer; two for arthritis; three for ovarian cancer. Refreshingly and strategically, the two leading breast cancer research charities have recently merged to form Breast Cancer Now. Charities are doing valuable work everywhere. But we believe a sharper research-centered focus is crucial.
We champion awareness of ALL the women-only cancers – 42% of the cancers that women get are specific to women. We fund pioneering medical research into their early diagnosis, developing screening, risk prediction and prevention.We’re not researching better treatment or finding silver-bullet cures. (Again, there are many other – and much bigger – charities investing in this area.) Neither are we providing the direct service provision for those who are on the cancer journey – again, there are many others doing this.
Our research team is made up of the brightest minds who work in clinical practice in the UK and internationally. They are also academic researchers. We fund programmes at an early stage, often where conventional research funding is harder to come by. When the work shows results, bigger funders join in with us. In this way the tiny Eve Appeal has started – and now co-funds – the biggest randomized control trial in the world (UKCTOCS) alongside the mighty Medical Research Council and Cancer Research UK.
The focus of our research is early detection – we want to stop cancer before it starts – because the evidence of the past three decades makes it clear that this is what will save most lives.
Many deaths from gynae cancers are potentially preventable if detected earlier on. So much money has been spent on research into treatment and drug trials concerning some of these gynae cancers, yet the mortality rate has barely changed. Our research will provide the best chance of finding out why and how these cancers start and what can stop them.
So September is an important time. Our 2015 National Gynaecological Cancer Survey shines a light on some key factors that are getting in the way of earlier detection. But awareness-raising alone is not enough, we need the clever scientists to de-code these women’s cancers.
So it really is time to open up. Minds. Wallets. Yes, legs for those cervical smear tests! We need to tackle the taboo around gynae cancers with an array of weapons – celeb photos, corporate endorsement, column inches and social media sharing. But these alone are not enough.
Media coverage is great. Saving lives is much better. And that’s what medical research will do.”
Athena Lamnisos is CEO of The Eve Appeal
I would like to thank Athena for choosing to share her unique insight with us exclusively. It is so important to hear all the arguments to help us make better informed decisions. My work is about communication, which I have found to be particularly poor in the healthcare sector, and it is fantastic for patients, charities and health professionals to be all talking together. I hope that examples like this will help encourage much more meaningful collaboration to help us all be increasingly effective in improving the lives of people affected by cancer!
