As a Stage 4 melanoma patient living in Ireland I feel ANGRY……….. Why? you might ask, well despite our best efforts no one is listening. I have been a late stage patient with two years and in that time it has become one battle after an other to get some sort of recognition for our cancer. I have even heard melanoma refered to as un-sexy, yes folks an un-sexy cancer, sorry I should have got something more appealing to the powers that be and the public.
Last year I got mildly excited as Irish Cancer Society summoned all interested parties to their lush headquarters in Northumberland Rd for a National Skin Cancer Strategy meeting finally I thought this is going to become a national issue as we all know rates are increasing rapidly in Ireland all the data is there to prove it.
So what has happened since last year a couple of meetings and zero progress, next Monday May 1st sees the beginning of Melanoma Awareness month globally, but in Ireland the silence surrounding the subject is deafening. I have just gotten off the phone to ICS and they have no specific plans to mark the month, as our National Cancer Charity I find this strange. MarieKeating.ie will hold a seminar called advanced, Melanoma and You in Dublin on 27/05 for patients and family which is very welcome, but, in general you won’t see any newspaper ads or hear on the radio about melanoma, you might get the rare sad story published by the papers looking for sensationalist stories, but a national awareness campaign no chance.
Why are we failing to warn people of the dangers of too much UV exposure, is it up to patients who are already dealing with the illness to make sure the message gets through, isn’t that what our well-funded health promotion organisations are supposed to be doing, (this is after all a preventable cancer in many instances) while we as existing patients not lucky enough to have had warnings concentrate on getting better and hopefully staying alive.
Because that is the truth about skin cancer they are not all created equal, Squamous and Basal cell easily treatable, If you are unfortunate enough to get Melanoma the 3rd most common cancer in Ireland your life will change forever. Yes 95% of those melanomas will be successfully removed but, for approx 185 families, each year (that figure is rising) that is not the case, they will sadly lose a family member to this disease and 27% (NCRI 2016) of those will be under the age of 50.
But they are getting the best of care I hear you say,……. with all the latest treatments this is Ireland,……. surely we are doing everything we can to help these Cancer patients…….. NO we are not!!! …….. FOUR new treatments have been refused in the last year. Two of those treatments are Mek inhibitors TRAMETINIB and COBIMETINIB they are used specifically for patients with a BRAF mutation (I have it) I get my drug on compassionate grounds from the so-called big bad Pharma company to be used in combination with one I get from funded by the HSE. If I didn’t have access to both these drugs at same time there is a high chance I wouldn’t be writing this right now.
What will happen to new Patients like me if these drugs are outright refused as has been indicated to me WILL happen in an announcement in the next few weeks for two more treatments. NIVO Mono and IPI/NIVO combined, these are groundbreaking Immunotherapy drugs we hear about in the news and read about saving patients lives in the papers. Irish patients since last August have no access to these as they were deemed too expensive for the likes of you and me to have, it didn’t end with #Orkambi there are still patients in Ireland being denied what is considered the best standard of care globally (checkmate 069/067) even though we rank 8th worldwide ($4379) in UNECE figures for monthly average wage ahead of Germany ($3478) and the UK($3461) who have access we instead are on a par with Romania ($828) when it comes to getting these treatments. Even Greece has access to these treatments and they are bankrupt lurching from one economic crisis to the next. WHY are they not being provided to Irish Patients?
Yes there is a problem with the pricing of these treatments but the delays in negotiation of prices is costing lives it has been almost two years since NIVO mono was submitted for approval this is totally unacceptable to Irish patients and their families. We needed these treatments two years ago and we still need them now!!!!!
Ireland is a wealthy country,…….. Where is the money going?………..Do we Care?………… Are we not worth it to you to keep alive?………… Why is our health system and access to new drug treatment a constant battle for patients?………… Do we as a stage 4 cancer patients have to walk to Dublin or sleep on footpath out side Dáil Éireann to get our treatment when we should be enjoying the time we have left?
WHY IS NO ONE LISTENING?………………………………..
Please sign our petition for the approval of new treatments in Ireland 🇮🇪 https://www.change.org/p/department-of-health-ireland-the-approval-of-new-treatments-for-all-melanoma-patients-living-in-ireland?recruiter=361390864&utm_source=share_petition&utm_medium=whatsapp