The Kerryman (South Kerry Edition)
PARENTS WELCOME CF DRUG WITH TEARS OF JOY
IF health is wealth, then your children’s health is worth its weight in solid gold.
Little wonder then that Angela Ryan and her husband Darren shed tears of elation this week when they received news that their four-year-old daughter Chloe will have access to ‘miracle’ Cystic Fibrosis drug Kalydeco from early next month.
Chloe was diagnosed with Cystic Fibrosis when she was three-weeks-old, and because she has the gene mutation G551D she qualifies for Kalydeco – but prior to last week’s agreement between the Health Service Executive (HSE) and manufacturer Vertex Pharmaceuticals, the drug was only available to children over the age of six due to issues surrounding pricing.
While the drug has been shown to improve lung function considerably for over-sixes, as well as reducing the amount of time spent in hospitals, research suggests children in Chloe’s age group can also benefit from using Kalydeco.
It is already available to under sixes in countries like Scotland, the US and Australia.
Angela explained that Tuesday’s announcement means her daughter will have a year-and-a-half’s worth of extra cover against infections and lung-scarring, lessening the risk of her needing a lung transplant in the future and the amount of antibiotics she will need to take. Angela has previously described Kalydeco as the closest thing to a cure available to Chloe.
“I got a text at a quarter-to-five on Tuesday evening from Cystic Fibrosis campaigner Gillian McNulty, and she said that Minister Harris was about to make an announcement,” she said.
Straight away, I threw Oireachtas TV on and hoped good news was on its way.
“My husband just arrived home from college in time for Minister Harris’ speech, and when the news we’d waited for finally came through, bringing this campaign to exactly the conclusion all of us parents have campaigned so hard for, we screamed with joy.
“It was easily the greatest news we ever received, and we cried with elation – it was like as though United had won the league!”
The next few weeks will see little Chloe, who turns five in October, undergoing medical tests before Kalydeco goes on the shelf at the start of next month.
Chloe is one of 18 Irish children under the age of six who will be able to use Kalydeco from May 1, and a relieved Angela was not short of gratitude for those who helped her family over these difficult years.
“I’d just like to take the opportunity to thank everyone who has supported us, from the locality here in Dingle, and many people beyond the area as well,” Angela said.
“Friends, family, supporters like Betty Hand and Gillian McNulty, members of the media like Seán Mac an tSíthigh and yourselves in The Kerryman, campaigners, the team in the Butterfly Unit in Limerick, I’ll never thank everyone enough.
“The support we’ve received over the last few years has just been incredible and its something we’ll never forget.”