WEXFORD FAMILIES JOIN ORKAMBI DÁIL PROTEST
Many of the 30 families across Wexford who are affected by cystic fibrosis were among the estimated 2,000 people who protested outside the Dáil last week about the HSE’s refusal to pay for Orkambi, a costly drug that could greatly improve and prolong the lives of many of those with CF.
Claire Merrigan, mother of five-year-old Mason from Riverchapel said it was a highly emotional occasion. ‘We got a great response,’ she said. ‘Both Gerry Adams and Micheal Martin spoke, as did the main organisers. It was a very emotional day but a very proud one for the CF community who joined forces for their fight for Orkambi.’
The day started off with a minute’s silence for those who had passed away. ‘ Then we all burst our CF purple balloons to show the government they are bursting our hope,’ said Claire.
Claire said that the speeches that followed were so emotional and came from people with CF and parents who have lost children. ‘It ended with us tying our purple roses to the gates of the Dáil,’ she recalled.
She welcomed a statement which came later from Minister Simon Harris who revealed Vertex and the HSE are willing to go back to negotiations which had halted after 26 weeks.
‘I’m amazed how the whole CF community pulled together,’ she commented. ‘People really got behind us. I think everybody was shocked by the numbers of people that were there. It was so lovely to see.
‘It was the most emotional day I’ve had since his diagnosis. To see everybody’s faces on the posters, including some who have already passed, was just heart-breaking.’
She said another march is planned for January 25, unless there is progress in the meantime.
‘We just feel let down by our government,’ she added. ‘We just feel like pawns in a chess game. People are dying while this is going on. People are talking of relocating to other countries to save their children.’