I am writing this as someone with experience of photographing and more importantly listening to and advocating for currently 20 women living with Secondary Breast Cancer in Northern Ireland. This is my experience.
FACT - not one of these 20 is on a trial drug and not one of them knows of anyone else in the province who is on a trial drug. Yes for primary breast cancer but not for Secondary.
FACT - To access a trial one must establish that there is a suitable trial being run.
FACT - It will not be in Northern Ireland hence there is the necessity either to travel to mainland UK or relocate. Frequent travelling or relocating whilst ill and undergoing chemotherapy is not an easy decision.
I did ask recently of an experienced cancer practitioner (in the knowledge that none of my personal contacts were on drug trials) what the procedure is in NI to identify those who may be suitable. I was assured that there was a very good system in place where top oncologists visit the cancer centres regularly to seek out those suitable. My own thoughts were that I doubted this happened in practice - at least not for those living with Secondary Breast Cancer.
Nevertheless in theory it is possible.
HOWEVER - The fact that none of the 20 women in that photo to the right is on a drug trial speaks volumes.
To quote one of them...
"They won't give me a trial drug in case it kills me, but they will watch me die whilst I wait for it to be approved. I am a grown adult it should be my decision"
So obviously I do understand the need for scientific trials etc., however, there is without a doubt a pool of women here in Northern Ireland who would give anything to have access to a trial drug. Unfortunately for this group because of where they live, any access is likely to be too late and come with the disadvantage of relocation at at time they are very ill.
REAL LIFE EXPERIENCE - so just to get back to how things are in practice - I will recount the experience of one of these women with her Oncologist today. When questioning her Oncologist re availability of trials etc she asked if he would support her. He said he would but the NHS would only pay for ONE initial consultation in England and then the cost of everything else would lie with her ie weekly travel, consults and treatment - unless she could make some sort of case - ie fight for it. (Just want to remind readers that energy is not in abundance for these kinds of fights). Then he told her that the RESEARCH as to which trial would be suitable would also sit with her!!! He said that the Oncologists simply dont have the time nor that capacity to do the research. This clearly does not accord with what the cancer practitioner told me in person.
So the short and the long of it is - in theory all things are possible but in practice any one of these women (none of whom is an Oncologist) would have to research the best trial for themselves, fund and have the entry for all travel/accommodation/relocation - all whilst undergoing treatment for a cancer with an average life expectancy of 2-3 years!!
I don't know about you but that seems to me to make the whole idea pretty impracticable.