Open Letter: This is what a deal on Orkambi means to one Tallaght family

Yesterday the Minister for Health, Simon Harris confirmed the HSE had reached a deal with the makers of Cystic Fibrosis drugs Orkambi and Kalydeco for their use in Ireland.

The cost of the life-changing and life-enhancing drugs had been a major road block for the HSE securing the drugs, but after much lobbying by patients and families of those affected by Cysitic Fibrosis the a deal was finally struck.

One of the families celebrating the news are the Brophy’s from Tallaght, with nine-year old Saoirse being compatible with Orkambi, just like more than 600 other CF patients in Ireland.

In a beautiful and emotive letter to the Echo, Saoirse’s mam Siobhan expressed her relief and delight that her daughter has been given her life back.

ORKAMBI HAS BEEN APPROVED

“I am going to stay positive in light of such an amazing day for Saoirse, myself and the CF community.

“I’d like to start off by thanking Minister Simon Harris for doing the right thing and saving my daughter’s life.

“I genuinely wish you well for the future, and we plan to enjoy the one you’ve given us.

“I want to thank all of my friends and family, for every time you shared, every time you liked, and for every time you talked about anything Orkambi related (and also for putting up with me and my absolute obsession with this drug, especially you Sylvia Hayes, you endured A LOT!).

“I want to thank the Echo Newspaper for always supporting and promoting our plight. You all may not realise it, but every time you highlighted our story we got one step closer to today.

“I’d like to thank CF Ireland and all involved in the Orkambi campaign, especially the parents I’ve gotten to know through it.

“I also would like to take this opportunity to thank a truly selfless individual, despite her daughter not being compatible with Orkambi, she fought alongside us and was a vital figure in our campaign.

“Thank you very much Bernie Kierans Martin, and I would like to vow to you right here and right now that WHEN they come up with a drug for your daughter, I will fight alongside you with the same compassion and determination that you have shown us.

“Lastly, I’d like to thank the people of Ireland for keeping the pressure on, and showing me that, as a nation, we still put our people first.

“It’s an absolutely wonderful day. Saoirse has been given her life back, and that truly is something to celebrate.”