Tag Archives: advocacy

All for one, and one for all! Patient power at ESMO 16

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

I had no preconceived idea of what ESMO 16 would be like, I applied with an open mind. How would it differ to other conferences in terms of the patient advocacy track would be the litmus test for me as a patient but also an advocate.

The Patient Track at ESMO made it feel I had a right to attend the conference – funny considering I am the one with the disease, the whole conference was based on!! But it has felt that way in the past, like you are being allowed to watch – this was different. This was not just for the medics, what we as a group had to say was just as important and relevant as anything that was revealed at the scientific presentation sessions. The topics covered were wide ranging and engaging, they ran not in parallel with the scientific sessions, but were given proper respect within the running order and it showed.

There was overflow needed for most Patient Track sessions, and those that were attending to listen were not just Patient Advocates, but the Oncologists, the Researchers, and the Pharma representatives. That’s because what we have to say is important and well informed – this is not our job it is our lives, so what could be more important to us?

Often the general public don’t understand the complexities of difference in cancer until you get one. It’s not a topic one reads up on for fun, most only keep up if they are personally connected. Also, all cancers are not created equal – it can become all too apparent that maybe you didn’t get the one with the most support or media air time or the most funding attached to researching it. But at the ESMO patient’s track this year I didn’t feel any of that. I felt instead part of a movement, a revolution of sorts that brought us all together bound by the one thing we have in common: a deep rooted desire to achieve the best for patients no matter what type of cancer they have. We are all in the same boat, there was no paddling your own canoe at ESMO.

“I felt part of a movement – a revolution of sorts”

Did I learn anything from my experience? YES. I am more confident in my connection now to Europe in my approach to my advocacy: I can reach out to many different branches of cancer communities, and advocacy support networks across the continent, and get help and information that’s still relevant to my community. We can help influence change that benefits patients wherever they live. Together, in solidarity we can achieve much more, we can work for equality of access and support for all, regardless of our cancer type or geographical location, we don’t leave anyone behind it’s a sort of unwritten rule, we go back to pick them up and carry them with us, all for one and one for all.

Kay Curtin also blogs at https://irishmelanomapatients.wordpress.com/

Only one day for advanced breast cancer

Marc Beishon

Marc Beishon

As October draws to a close, and another awareness month for the breast cancer movement, there is some good news for those living with or supporting those with advanced or metastatic breast cancer. This year there has been more emphasis on advanced disease amid the sea of pink ribbons and fundraising campaigns, which have tended to focus on early and curative stages of breast cancer, leaving many women (and some men) isolated from both the advocacy and medical communities.

This is particularly so in the US, where the pink ribbon campaigns were first launched. For four years, there has been a national metastatic breast cancer awareness day (13 October this year), and it has now attracted attention. Several national media outlets have highlighted the issues facing those with advanced disease, such as the Chicago Tribune and SFGate and there was an item on the TV programme, Good Morning America. Australia’s Breast Cancer Network joined in this year for the first time, but under the name of secondary breast cancer awareness.

Women speak out

A patient's blog

A patient’s blog

Advocacy groups such as the Metastatic Breast
Cancer Network
and METAvivor have been instrumental in the US in raising the profile of
advanced disease, and women with metastatic disease are taking to blogs to write about their experiences and how they feel about the lack of interest from the wider community – for example here and here. They are not only powerful testimonies but also calls to action for progress for their incurable condition, not least just being heard.

mbc coverAgain in the US, industry and advocates have come together in the Metastatic Breast Cancer Alliance to report on the status of research on advanced breast cancer, the quality of life of patients, what information and support is available, and public awareness. Not least, they aim to find out much more about how many people have metastatic disease. Their report (left) just published with the support of the Avon Foundation, is probably the most comprehensive review so far of these issues – and the agenda for the work needed is challenging, to say the least.

New survey data in the US has also informed Pfizer’s Breast cancer: a story half told initiative – as the company says: “Many people know little to nothing about metastatic breast cancer.” It joins a similar initiative sponsored by Novartis, Here & Now, which launched in Europe last year.

The advocacy movement in the US is particularly vocal, but if it has struggled to be heard, imagine how difficult things are in many other countries. There is an urgent need for much more to be done globally across the spectrum of issues – standards of care, research, and support for those with metastatic and locally advanced breast cancer.

ABC guidelines out

abc2The latest updated international guidelines (right) that cover this spectrum from ABC, the Advanced Breast Cancer conference, aim to help fill the gaps by applying current knowledge to patient care. The conference, held by the European School of Oncology (ESO) and the European Society for Medical Oncology (ESMO), is the only global event that brings together health professionals, researchers and advocates to publish such guidelines, which have recently been published in The Breast and Annals of Oncology – the full paper is free to download via the ABC site.

Progress in treating advanced breast cancer remains frustratingly slow, and awareness, support, and research funding are still low. The ethos of the ABC conference is to build on the momentum from the latest initiatives and especially to unite experience and research at a global level, and we encourage all to download the guidelines and help spread the word.

abcinfo2