Scientist to Survivor Program
American Association for Cancer Research
11th Scientist to Survivor Programme, Denver, Colorado, April 2009
It was with great delight and anticipation that I received my invitation as a board member of EUROPA DONNA – The European Breast Cancer Coalition, to join this year’s Scientist to Survivor Programme at the 100th Annual Meeting of the American Association for Cancer Research, in Denver, Colorado. It was to be my first conference in the USA and my first to cover all cancers, not just breast cancer. With circa seventeen thousand delegates coming to hear the world’s leaders in cancer research announce and discuss the latest progress in cancer detection, treatment and prevention, the Scientist to Survivor Programme, in its 11th year, offered patient advocates a tremendous opportunity to be exposed to cutting edge research in an informed and welcoming way – and it did not disappoint.
To a patient advocate with absolutely no background in medical or biological research, the programme really deepened my understanding of fundamental topics in cancer research and underlined my awe and admiration, yet again, for the work of cancer scientists. I feel so lucky to be benefiting from how far breast cancer research has come in recent years, yet am dismayed at what I learnt about the considerable challenges and slower progress for many other cancers. But one of the indelible impressions I have come away with is the phenomenal impact of the Genome Project, not only on what is researched but how it is researched and the extraordinary accelerated pace of current cancer research.
The words "Tissue is the issue" coined by Anna Barker, of the National Cancer Institute at our opening session, resonate frequently with me since my visit there. So much so that I took the opportunity while meeting with the Irish Minister for Health and Children, Mary Harney, to impress upon her Europa Donna Ireland’s view of the importance and urgency of pushing forward on the establishment of a biobank in Ireland. From the outset, the Programme staff and its invaluable mentors went to great efforts to welcome participants and ensure that all our needs were met in getting to Denver and attending the Programme. They provided us with comprehensive participant kits and gave us every assistance to make sure we got as much as possible from our time there. By having dedicated rooms (offering generous refreshments) within the conference complex, strategically located to minimise the amount of walking we had to do, we had many opportunities to meet and chat with the other advocates and scientists.
Altogether there were 27 survivor / advocates, seven of whom were from outside the States, including three of us from Europe. The advocate poster sessions were an attractive, useful and memorable way of getting to know what individual advocates were working on and the extraordinary challenges many have faced and continue to face both personally and in their advocacy. Their commitment and passion for their cause was truly inspiring. In particular, I found the Special Interest Sessions – which were tailor-made for the advocates, the best part of the Programme. Each one surpassed my expectations with plenty of time for questions and discussion. The fact that all of these sessions were held in the room adjacent to the advocate meeting room, was very useful and made it really easy to fit them into our daily schedules.
Highlights of the Programme for me included:
- The vision expressed by Eric Lander of patients contributing cancer genome and clinical outcome to a common database to propel knowledge and improve therapy. The hope now is that genetic analysis will be routine in research in 5 years and will guide therapy and be the standard of care within 10 years. The fact that today we have 1 million genetic markers, having moved from a position in 2000, where we had genetic markers just for diabetes but by 2007 we had 400, and that most of the genes identified as having a contribution to disease weren’t those suspected by scientists of having a role. The critical role of just 5-10% of the micro-environment for cell development
- The story of the development of Taxol from the Yew tree by Susan Band Horwitz - the pathologist responsible - which she really should commit to paper and share worldwide.
- Walter Willett’s hugely informative lecture on Diet, Nutrition and Cancer to a full room at 7.00am.
- strong>The role of pharmacogenetics in understanding better the benefits and risks associated with drugs and treatments and guiding patient decision-making.
- The welcome relief (to me) of moving from molecular tumour markers to health behaviours which looked at physical activity, nutrition and supplements, and psycho-social factors in the treatment of cancer.
- How socio-economic factors can put stresses on the genome and contribute to health disparities in different populations.
- The contrast between what the National Cancer Institute is spending on cancer research - $US 5 billion, compared to the $US60-80 billion spent by the pharma industry.
- The role of philanthropic research funding in ensuring flexibility and speed in making progress, especially in paediatric cancer.
- The fact that there are 800 medicines being tested in the fight against cancer and 106 of them are for breast cancer.
- The innovations incorporated in the I Spy trial on personalised cancer treatment with its randomised adaptive design and comprehensive advocate involvement, echoing Europe’s MINDACT.
- And above all, the warmth, camaraderie and passion for their work of all the scientists and survivors on the Programme, now friends and contacts to follow-up with.
This is just a tiny sample of what I learnt and does not do justice to the number and richness of the sessions I attended.
My only regret was often having to choose between sessions that clashed. Given the scale of this conference, and the work involved in hosting a conference of this size, I would like to thank and pay tribute to the Faculty members who made time in their extremely busy schedules to share their expertise, join us in our meeting room and enjoy the delightful social occasions with us. In this regard, I would like to take this opportunity to wish the now President of the AACR, Tyler Jacks, every success in his new role.
For those who would like to know more, the CR magazine of the AACR provides a forum for sharing essential, evidence-based information and perspectives on cancer research, advocacy and survivorship and includes useful podcasts on its website: www.crmagazine.org.
I offer my warmest thanks and appreciation to the AACR for its vision and generosity in hosting the Scientist to Survivor Programme which I was privileged to attend this year.
The dedication and commitment of the advocates and scientists who delivered the Program, made it for me an unforgettable experience, underlining the importance of harnessing the experiences of survivor / advocates and the necessity of working together with scientists globally in the fight against cancer.
Christine Murphy-Whyte, June 2009.