Family of tragic mum say news of clinical trial return is ‘bittersweet’
THE family of a woman who died after a potentially life-saving trial drug was withdrawn said the news it is being made available again is “bittersweet”.
Marion Kelly was one of 21 patients nationwide who took part in the test for a rare lung and liver disorder.
The 53-year-old, from Nenagh, Co Tipperary, was put on the trial 11 years ago but she died last December shortly after the trial was withdrawn.
Her family have accused the health authority of sitting “idly by” when it withdrew the drug Respreeza while Marion “fought for her life”.
And the late mother and grandmother’s loved ones have also claimed “duty of finance won out over the duty of care”.
THE HSE and CSL Behring confirmed on Wednesday the treatment will be guaranteed indefinitely for the 19 Irish people battling rare disorder Alpha-1 antitripsan deficiency. The Kellys said: “We are relieved with the outcome on the long-term provision of Respreeza for the Alpha-1 patients who participated in clinical trials.
“This is a campaign that Marion started and was very passionate about while she was alive and would have wanted us to fight until a positive resolution was found for her fellow Alpha-1 patients. Thankfully, today that fight ends and Marion can rest in peace.
“For nearly three years the Alpha-1 patients have had to live with a lot of uncertainty around the supply of Respreeza, the drug that has given them such a good quality of life for 11 years.
“They had to endure a period of time without the drug and during this time Marion and Anna Cassidy tragically passed away.” Mum-of-one Marion’s death last year came just a fortnight after she made a desperate plea for help on social media as she told of her fears after the Government and HSE “decided to take that drug away from us”.
The suppy of Respreeza stopped after the HSE – with advice from the National Centre of Pharmacoeconomics – decided it did not represent value for money and they refused to reimburse the drug company the annual €80,000. A six-month supply of the drug sat in storage in Dublin while the HSE refused to administer the drug at a cost of €6,000. Her
family’s statem
She would still be with us if it was not for the inaction of the HSE KELLY FAMILY
STATEMENT YESTERDAY
e n continued: “At a time when the patients should have been focusing on their health, they and their families had to fight for the right to not have this drug and effectively their lives taken away from them.
“There is still a massive question mark as to why that happened and that question mark rests on Marion’s grave.
“We are in no doubt she would still be with us if it was not for the inaction of the HSE. It had the means to do something but instead chose to sit idly by while Marion fought for her life until she could fight no more.
“Those running the HSE need to reflect on this because the reality of our experience is the duty of finance won out over the duty of care.”
The Kelly family said they would be “forever thankful” to Labour’s Alan Kelly for his tireless support during this campaign and support to Marion prior to her death.