Dear Minister, help me explain to Hanna why she must endure avoidable suffering

SIR, I would like to address this as an open letter to Health Minister Simon Harris.

Dear Minister Harris, I was wondering if you could spare a few minutes of your time. I appreciate you’re currently extremely busy trying to arrange automatic medical cards for all our prisoners – which I’ve no doubt is a time-consuming job – but when you’ve finished securing the future health care needs of our murderers, rapists, paedophiles and drug dealers, I wonder if you might get a chance to concentrate on the hundreds of Cystic Fibrosis patients who are desperately waiting for approval for the life-saving drug, Orkambi.

The only reason I ask is because I’m currently cooped up in a tiny hospital room in Limerick with my six-year-old daughter, Hanna, who has CF.

The room, granted, is a far cry from the €46,000-a-month Tokyo apartment your government is currently financing for our Ambassador to Japan, but we’re doing okay with our modest surroundings. We’ve got used to modest living since I was forced to put my 17-year-old journalism career on hold to care for my daughter full time.

It’s been a pretty rough few days though, particularly for my daughter, who started her week in Crumlin hospital having a port inserted in her little chest. You’re the Minister for Health so I know I don’t have to explain to you that the reason for this procedure is to allow doctors gain direct access for IV antibiotics, instead of struggling to find lines in her little hands all the time.

As you can imagine, she was extremely sore and upset after the operation and through the tears she asked me why she had to undergo this procedure. I told her I’d write to you and ask.

Sorry to pass the buck, but I genuinely couldn’t explain why anyone would have to have this operation, let alone a six year old, when a drug that could potentially eliminate all these infections in the first place has been deemed too expensive by your department.

I didn’t quite know how to tell her that she’s simply not worth it in the eyes of this country’s decision makers.

Anyway, from Crumlin we made the car journey to her dedicated CF team in Limerick. Apart from being alerted to the bed crisis at the country’s premier children’s hospital, we thought it would be best to be an hour and a half away from home that night, rather than four hours.

You see, home is not an option for the next two weeks as there are absolutely no CF facilities in Kerry. But that’s a whole other letter.

So, while I’m grateful that her needs will again be met by the wonderful team here in Limerick over the coming weeks (at God knows what cost to you and your department) I’d ask again that you come back to me at your convenience with an answer for my daughter. Why, exactly, is she having to endure all this?

My address is below for correspondence, but you can get me at Room 17, Sunshine Ward, University Hospital Limerick for the next two weeks.

And as I’m writing, can I make one further suggestion? As you are currently in the middle of assessing just who should automatically qualify for a medical card, can I humbly suggest you include people with Cystic Fibrosis on that list. You know, the people who have never broken a law in their (short) lives.

Sincerely, Marisa Reidy Rathkenny Abbeydorey, Co Kerry