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Mom Calls on Government to Fund Life Saving Cystic Fibrosis Drug

A Castleknock family are one of many Irish families affected by Cystic Fibrosis who are calling on the government to fund a new groundbreaking drug which has the potential to help up to 600 sufferers in Ireland.

5 year old Grace Duffy is a Cystic Fibrosis sufferer and her parents Marie and Niall are among concerned parents across the country calling on the government and drug company vertex to come to an agreement and fund a new drug for CF called Orkambi, which can increase lung function and weight in sufferers, less hospital admissions as well as slowing down the disease progression.

The disease is an inherited chronic disease which primarily affects the lungs and digestive system. Grace was born on 11/11/11 in the Rotunda, Dublin. Before being discharged, the hospital carried out a heel prick test, which is routine in Ireland.

"I thought nothing of it", recalls mom Marie. "At the time we already had a very healthy 4-year-old at home. Two weeks later, on the 29th of November 2011, a day I will never forget, the children’s hospital number appeared on my phone. I was at the birth registration office, registering Grace's birth. Grace's heel prick results had come back and they showed that Grace may have a lung disease called Cystic Fibrosis. After a lengthy telephone call and a very long night, we were at the door of Temple Street the following morning at 9am with Grace in tow, she was due to get a sweat test to confirm that she has Cystic Fibrosis."

"The staff showed us such compassion and understanding while we waited a torturous three hours for the results. At 1pm Grace was tested positive for Cystic Fibrosis. Grace showed no symptoms or signs at the time, so the news came as a big shock. We were told her life expectancy will be around mid 20’s. Can you imagine hearing that news while holding your precious newborn baby in your arms?"

"We were taught how to give her medications, how to do physio with her, which we now do twice a day every day for the rest of her life. They showed us how to give her digestive enzymes which she has to take before she eats anything, how to give her inhalers and so on. The support we received from the hospital staff was amazing. As we learned more about the disease and the importance of keeping her well and healthy, away from people with coughs and colds."

"She is now five and doing relatively well. She is very brave for all she goes through and now pops up to 20 tablets a day and that’s just for her digestion. She inhales medication to keep her lungs healthy, vitamins to keep her from getting malnourished and a very high-calorie diet to keep her weight in check. She does all of this with a smile on her face as she knows no different. We attend the hospital regularly to keep her in check but we potentially face a long, difficult and unknown road with our daughter, Grace."

"When Grace was diagnosed in 2011, people would say to me that they are making huge efforts to find a cure and make Grace's condition more manageable and by the time she reaches her teens she will have a better outcome."

"I held on to that hope with everything I had. So now, this drug Orkambi has come along, and from seeing real people benefit from this drug and seeing the reduction in damage to the lungs - it really is amazing."

"However, Vertex (the drug manufacturer) has put a massive price on this breakthrough drug and the Irish Government is refusing to pay for it. They are trying to get a lower price for the drug but after 6 months of negotiations, enough is enough."

"This drug will vastly improve my daughter's health and they are putting a price tag on her precious life. "

The drug has already been approved in the USA and Germany, but with Ireland having the highest record of cases, they really should be the leaders in this. Since Grace was diagnosed almost 5 years to the day, I have met so many wonderful families who have children with Cystic Fibrosis. Many of these families have lost their beautiful children and I have attended three funerals of three teenagers that this drug could have potentially helped in the past 5 years, and that’s just people I know.People with Cystic Fibrosis need this drug.

"People with Cystic Fibrosis can lead a normal life if this drug becomes available. They can attend school and have a good attendance rate, go to college – simple things that the rest of us take for granted. I am calling for the government and Vertex to please make this drug available before another life is lost."

Marie and Niall Duffy and their family members recently protested outside the Dáil with the Cystic Fibrosis community, calling for Minister Simon Harris to make the decision and make this drug available.

About the Author

Editor of eumom.ie, Mairéad Cahalan is a creator of content, a lover of music, red wine and coffee, and a part-time wedding singer! Find her on Twitter, Instagram, Soundcloud and LinkedIn.

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