Vigil for cys­tic­fi­bro­sis

Bray People - - NEWS - BY MARY FOGARTY

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.’

Hazel Robin­son (right) at the protest out­side Health Min­is­ter Si­mon Har­ris’s Bray con­stituency of­fice last Fri­day.

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