Friday, 1 February 2013

Kalydeco Lament for Ireland

Reluctantly I write about this subject, it is however the underlying truth that we hide from the world, deny only to cope, protect our loved ones from, but it is the underlying reality that is Cystic Fibrosis. I write it for the removed outsiders who are pulling strings like Gepetto, with little experience or insight into the life we have to lead, but we are not puppets made of wood, we are people for God's sake! Not a statistic or a monetary figure.

"A conscience is that still small voice that people won't listen to. That's just the trouble with the world today..." `Jiminy Criket Pinocchio

There are CF sufferers all around the world who have to wake up day in day out and do gruelling routine of treatments, from nebulizers to physio therapy and beyond. The older you get with this disease the harder you need to work at keeping your body going. The older you get the harder it gets to work hard! If you want a day off too bad, it's not going to happen. You may spend you whole day clearing your chest one day, when you wake up the next day you will choke on the mucus because you've filled up again. We have no appetite. Our digestion is poorly resulting in crippling stomach aches and malnutrition because we can't absorb much of the little food we manage eat. Endless pills, hospital admissions, needles, tests. Coughing fits. Many go on to develop secondary illnesses, like diabetes or cancer. We're expected to clear our chests, eat more than the average person and then do loads of exercise all the while feeling exhausted and in constant pain... we're not lazy, we're exhausted. After all this we then face having adouble lung transplant to save our lives. This is just a little of what we go through.

Uncomfortable? Yes, so are all the CF patients who are waiting for relief, beyond uncomfortable! This is the practical reality of those of us living with CF. This was my reality for 31 years until Kalydeco. Thankfully Scotland overturned their decision about  Kalydeco and approved access for G551D patient living there, but I was prompted to reflect upon this dark side of CF because of the rejection of Bronchitol in the USA and the continual refusal of Kalydeco for the Irish. Both these new medicines are a massive, a long awaited break through. Bronchitol will help the airways of all CF patients, no matter what the CFTR mutation. Kalydeco is nothing short of life saving for those who carry the G551D CFTR mutation.

This Irish denial is an irony that it certainly intolerable! The Irish make up most of the G551D CF patients, 11% of CF patients in Ireland carry G551D, "the Celtic gene"!! Kalydeco is their life saving drug!!!

Mentally and emotionally it' humiliating, isolating, sad, fearful... each day living with the cloud over our head is  making a scar on our souls, hearts and minds. To needlessly suffer this is truly cruel.

There is little doubt my own G551D comes from the Emerald Island, my maternal Grandfather's parents were both Irish. I'm not sure I can convey accurately to you what I'm about to describe, however I need to try... We have accepted this condition because there was nothing that could correct it, medications in the past just managed symptoms, but Kalydeco is different, it's as vital as insulin is for a diabetic, it's a fundamental treatment for CF. The frustration, agony of knowing there is something in the world that can help you or your child, but you cannot access it due to legalities, politics, capitalism: MONEY...  It's gut wrenching painful, heartbreaking. I know I waited too, but not as nearly long as others. My heart is always with all those suffering this brutal disease with no relief at this moment. "There but for the Grace of God go I" ....

Have mercy on these dear people, who by no fault of they're own suffer endless pains of CF, there is something that can release them from this languishing existence: Kalydeco. It is nothing short of inhumane torture of the innocent.

Please allow access to Kalydeco in Ireland!!!!!

1 comment:

  1. Since writing this post Ireland have announced that G551D CF patients in Ireland will have access to Kalydeco from March 2013....
    OVER THE MOON!!!! So relieved and happy for the Irish. xox