Oh wow - you are amazing - all of you! I am so deeply touched by your response. I have briefly looked at the NBCF philosophy for how they distribute research funding but as yet have not looked at the proportionate income spend across the sector.
this is a quote of the research priorities for the NBCF:
Applicants requesting funding from the NBCF are advised to consider the following NBCF research priorities in their applications:
§ Research into prevention and/or early diagnosis of breast cancer.
§ Research addressing the social and public health needs of all individuals, and their families, living with a diagnosis of breast cancer. This also includes underserved populations such as women aged less than 50 years, women over 70 years, Indigenous women and women from culturally and linguistically diverse backgrounds.
§ Research addressing all aspects of advanced breast cancer.
§ Research encompassing translational research, with the potential to deliver outcomes that are clinically relevant or otherwise ready to be implemented to facilitate prevention or to improve the care of those with breast cancer.
§ Multidisciplinary research, which encourages research across disciplines and academic boundaries.
§ Research into novel health service delivery.
Particular consideration will be given to projects that are innovative, non-duplicative of other efforts and have the potential for national application.
So - secondary cancer is there - yippee. I wish I was an accountant because I can't understand the financial reports. my very lay look at the income and expenditure seems that almost half of the generated income is spend on administrative costs - this seems too high. I am not sure of the distribution of funds. I don't believe that we have the issues here in Australia that there are in the US where one quite political organisation generates most of the funds and therefore controls research with it's own agenda.
I think what it comes down to is a philosophical change - that by finding answers to Metastatic Breast Cancer we will also find answers for all. We are small fish down here in Australia in a big sea. I am heartened that we have such a coordinated approach here in Australia and the goals of each organisation are quite clear. (NBCF, BCNA and the McGrath Foundation) - Although within each organisation I would love to see more vocal recognition of MBC.
It is also heartening to see the NBCF have a goal of zero deaths by 2030 - probably way too late for me but not for my daughters.
Early detection is helpful particularly for post menopausal women - not those of us pre-menopause. 8 women die in Australia every day as a result of breast cancer. There is currently no cure.
I believe that the pink washing of breast cancer has made it a "trendy" disease to have - oh you have breast cancer - that's ok, Kylie is ok, everyone who gets it is ok! There are great programs that make you look good and feel better, A bit of lipstick and a wig - there you go, chin up and get on. Oh I always buy the pink ribbon product...
Breast cancer is not a pink ribbon. It is a thoroughly devastating disease. It is disfiguring. It is lethal. It makes children motherless everyday. It robs children of their grandmothers.
I would personally like to see Breast Cancer Awareness month change from a month of awareness to a month focused on raising funds to find a cure - to inform the public that there is no cure, that beyond the pink there is a world of real suffering in everyday families.
I would like to see the rhetoric change - awareness doesn't cure anybody.
I would like to see all of us get up there and demand that research funds go to our talented scientists, to drug trials, to drug funding. I wonder how many women with EBC realise that the drugs that are now hopefully preventing the spread of their breast cancer were all tested initially on desperate, late stage patients in the hope that it might help them live a month or two longer and if not, it might help their daughters.
Yes, we have come a long way because of the bravery and action of many fine, amazing women over the past 20-30 years - let's not get complacent, let's move for action and let's all support each other without exclusion.
Love you all.
Amanda xx
