The late Marion Kelly
The communities of Puckane and Nenagh were plunged into sadness this Friday when a local woman who launched a campaign recently to allow her remain on a lifesaving drug died suddenly.
Grandmother Marion Kelly, who suffered from a rare genetic condition, Alpha-1 antitrypsin deficiency, had called on people to sign a petition to allow her continue her treatment on a trial drug.
The condition attacks the lungs and liver.
She had been taking the trial drug Resprezza, and had only this week expressed fears for the future following a decision to discontinue the trial, which she began 11 years ago in Beaumont Hospital in Dublin.
Marion had described the drug as "lifesaving" and said she found it had slowed the progress of her illness. She said that all 21 people on the trial had found an improvement in their condition.
However, the trial ended some weeks ago following a decision by the National Centre for Pharmcoeconomics not to approve funding for the therapy.
The HSE has accepted a recommendation a recommendation not to reimburse Resprezza, stating that "evidence of a clinically meaningful benefit is not sufficiently robust to support reimbursement".
The manufacturer CSL Behring had been trying to get the drug licensed in Ireland but the HSE had maintained it didn't work and was not cost-effective.
It is believed that the drug would cost over €80,000 per patient per year.
Marion recently launched an online petition with the help of her daughter Aideen Fahy and had gathered 4,000 signatures calling on the HSE to make Resprezza available in Ireland.
The petition can be found at http://chn.ge/2Bkv9pW.
Marion died suddenly, in the wonderful care of the staff of Limerick University Hospital, surrounded by her devastated family, predeceased by her mother Frances and brother Eddie.
Sadly missed by her heartbroken daughter Aideen, son-in-law Denis, granddaughters Jodie and Mia, father Ned and stepmother Lelia, sisters Mairead, Ciara and Niamh, brothers Padraig, Naill, Fergal, Liam and Eoin, brothers-in-law, sisters-in-law, aunts, uncles, nephews, nieces, relatives, neighbours and her many good friends.
She is reposing on Saturday, December 2, at Ryan's Funeral Home, Nenagh from 4pm until 6.30pm.
Funeral arriving on Sunday to Puckane Church for Funeral Mass at 11am followed by Burial in Cloughprior Cemetery. Family flowers only, donations, if desired, to Dog's Trust.