It's impossible to know how any one of us would react if faced with a terminal cancer diagnosis. But it's probably right to say that most of us wouldn't embark on an international research project into a little-known drug treatment that might just help our condition. It's less likely that we'd devote precious time to helping other people facing the same fate access that drug.
Most people in Ireland know now just how dogged, tenacious and determined Vicky Phelan is, but this week, the depths of her strength were, once again, striking.
The drug in question is Pembrolizumab, used to treat some forms of cancer, but not approved for cervical cancer patients in Ireland. It is a drug that comes with a high price tag – it costs €8,500 every three weeks.
Monday night's Claire Byrne Live was the first time I met Vicky – and the first time I had heard about the battle she fought to find and get access to Pembro, which she credits with keeping her well this year. Vicky researched the drug herself, applied to join a US trial, but that didn't work out. She then went to the drug company herself, that didn't work either. She found the consultant oncologist David Fennelly, who prescribes it for other cancers and convinced him and his hospital to give it to her and paid for it herself. All the while, Vicky was fighting a High Court action against the HSE and the laboratories who misread her cervical smear test, not to mention dealing with a terminal cancer diagnosis and all that brings with it.
Once her case was settled and the extent of the Cervical Check controversy emerged, the State agreed to pay for Pembro for the affected women. However, this means that women who have cervical cancer but who are not part of the Cervical Check issue remain unable to access Pembro, even if it would benefit them.
Áine Morgan is one of those women and she also joined us on Claire Byrne Live this week. Áine has terminal cancer. She has exhausted radiotherapy and chemotherapy options and her drug treatment has also come to an end. Her oncologist is the same David Fennelly who treats Vicky Phelan and he knows, through medical testing, that Pembro could help Áine, but the cost of the drug will not be reimbursed by the State.
Áine has been fundraising, when she is physically able, but she finds it hard because of her illness and feels embarrassed asking people for money to fund her medical treatment. She knows she is at the end of the road of options and while Pembro will not cure her cancer, it might just give her more time and more quality time at that.
"Is it acceptable to allow a situation to continue whereby some women have a drug treatment paid for by the State and others do not?"
This is a very tricky situation for the State. The commitment given to woman affected by Cervical Check was made for the right reasons - to help those who feel let down because, they say, their cancer should have been picked up sooner. But there is an inevitable consequence now. Is it acceptable to allow a situation to continue whereby some women have a drug treatment paid for by the State and others do not?
Seeing Áine and Vicky sitting beside each other on Monday night brought that into stark relief. Normal procedure for drug approval was by-passed in the case of Pembro and the Cervical Check group of women, but can you simply now say that only these women can have the drug and that others can't?
The Taoiseach addressed the issue in the Dail this week but time is of the essence here. Áine needs to get on that drug as soon as possible. She has gathered funds to start on it but she and other women, need the certainty now of State reimbursement for Pembro.
How many times during the recession and even now with Brexit have we heard politicians saying, 'we are where we are'? Well, with Pembro, we are where we are now too and because of a commitment given to a certain group of women, Vicky, Aine, Labour TD Alan Kelly and many more are campaigning for approval to be given, without delay, to others would benefit from Pembro. This means that negotiations with the manufacturer on price and discussions about efficacy may have to take a backseat to ensure fair and equitable treatment of women.
Áine Morgan can't wait and Vicky Phelan won't rest until this drug is given to women who need it.
You can watch the interview with Vicky Phelan on Claire Byrne live in full here:
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