The late Marion Kelly
Tipperary TD Alan Kelly has said he believes that Nenagh woman Marion Kelly, who died suddenly last week, had been “let down by the health system”.
Ms Kelly, a 53-year-old grandmother, died on Friday in University Hospital Limerick.
She had been taking part in a clinical trial with the drug Rezpreeza, which was stopped last month due to a dispute between its manufacturers, CSL Behring, and the HSE over who should pay for its administration.
“I was deeply saddened and shocked to hear of Marion’s sudden passing last Friday. I was due to speak with members of her family about her case within an hour of hearing the news,” said Deputy Kelly.
The Labour TD said Ms Kelly was a lady and someone he had been working on behalf of for some time.
“I had been raising her case with the Minister for Health, his Department and the HSE constantly,” said Deputy Kelly.
“I believe Marion has been let down by the health system in this country. No one knows whether being off Respreeza in any way contributed to her untimely passing, but I believe that, if at least she was still on it, she would have been in a better position. Bottom line is that Marion wasn’t given the ‘best chance’ and that makes me upset and angry,” he said.
Deputy Kelly said that Respreeza had changed Marion’s life immeasurably, where once she was visiting hospital six or seven times a year, she was now only doing so once or twice.
“After the National Centre for Pharmacoeconomics decided not to find the drug, which many saw as inexplicable given its benefits and relatively modest costs, there had been an agreement to fund the drug for another six months while patients could adjust or another solution could be found.
“Unbelievably, though, there were some problems between the HSE and the drug company over how to pay for the administering of it. In that period now two of the 21 patients have passed away,” he said.
Deputy Kelly said that he spoke with Minister Simon Harris this Monday and he informed me that ultimately the HSE had agreed to pay for this.
“I just can’t understand or tolerate why this took weeks to agree. It is crazy as it meant that Marion and Anna Cassidy (from Donegal who also passed away) both had to wait so long for this to be agreed,” he said.
Deputy Kelly said that the drug company and the HSE should have had all this organised.
“Marion deserved better. The NCPE, the Minister and his Department of Health and the HSE need to change fundamentally and quickly how they deal with all orphan drugs and the relative drug companies. The latter need to behave responsibly as well. What’s going on is not fair or appropriate,” said Deputy Kelly.