Vigil for cysticfibrosis
A CANDLELIT vigil took place at the Bray office of Simon Harris last Friday evening, calling for the medication Orkambi to be given to patients with cystic fibrosis. The vigil, at locations all over the country, was also held in memory of those who have lost their lives to the disease.
‘We urge each and every country, including our own, to speed up negotiations with pharmaceutical companies so no more CF sufferers need to keep fighting as hard to keep air in their lungs,’ said a spokesperson for the ‘Yes Orkambi’ group. ‘We understand that pharmaceutical companies need to get paid. But we beg them to ensure that these ground-breaking drugs are delivered to the patients.’ Parents and supporters lit candles in solidarity at the Town Hall area last Friday evening, and they held up signs which read ‘A Light of Hope’.
Hazel Robinson, who’s daughter Gypsy Ann Robinson is 14 and has CF, said that she felt it was important to bring the message right to the door of the Minister for Health. ‘We want to express the urgency that we need these drugs,’ she said. ‘And also to commemorate those who have passed away. The sad reality is that the longer we wait for the drugs, the more people die and that’s the reality.’ Gypsy Ann was in hospital for eight months last year.
‘What she endured in those months, you wouldn’t see in a horror movie. Even when she’s not in hospital, it’s a daily routine of 40 to 50 tablets a day, nebulisers and physio. Orkambi is the closest thing to a cure that has ever come to the table.’ Siobhan Wheeler spoke at the vigil. Her son Ian is fighting every day, she said. ‘He wants to be a normal child like his friends. He wants to play football. When he’s unwell he can’t, he’s on the machine all the time, on antibiotics. It’s a disgrace the way we have to beg Simon Harris for our children to live longer.’
‘I fully appreciate that this is a very stressful time for Cystic Fibrosis suffers and their families,’ said Minister Harris. ‘While I am very eager to see an end to the waiting and the worrying, as is the case with all medicines, decisions on reimbursement are made by the HSE Leadership on objective, scientific and economic grounds. No decision has been reached regarding Orkambi and the matter is currently under consideration by the HSE Directorate.’