Marion Kelly, 52, died in University Hospital Limerick, on December 1, lasting just six weeks after a long-running trial of a CSL Behring manufactured drug, Respreeza, ended.
She had been on the drug for 11 years and it was credited with turning her life around.
The Nenagh woman, a former hairdresser, had a genetic condition, Alpha 1 Antitrypsin Deficiency, that can cause severe lung and liver problems.
The drug supply ceased after the HSE — on the advice of National Centre of Pharmacoeconomics that it was not value for money — declined to reimburse the drug company the €80,000 per annum for the drug.
However, the company had left six month’s free supply of the drug in storage for the HSE to administer at a cost of €6,000.
The HSE declined to step in, leading to the drug’s availability being cut off for the 21 patients on the trial eight weeks ago.
Ms Kelly is the second of the 21 to die since the drug was removed and other patients’ health deteriorated significantly.
The HSE intervened the day after Ms Kelly’s death to confirm it would now administer the drug for the next six months.
Her family now want to meet the health minister to secure reassurances that not only will the HSE honour the commitment but find a solution for beyond the six months so no other patient will die needlessly.
Ms Kelly’s daughter Aideen said: “The minister spoke openly in the Dáil when questioned about my mam’s death by Deputy Alan Kelly but we want him to translate that into a commitment that he will do whatever is necessary to ensure no patient again has to die unnecessarily because of the drug being taken away from them.
“The drug company is unquestionably charging exorbitant amounts for this drug but there was a six- month free supply available and the HSE failed to act,” said Aideen. “My mother’s fate was sealed because of that.
“What we want now is for the HSE to honour the commitment to administer the drug for the six months, a commitment that is somewhat hollow for us as it’s too late for mam. But not just that, we want to minister to direct the HSE to get into meaningful talks with the drug company and find a solution so that this drug, which is licensed across Europe, is available beyond the six months.”
On her mother’s fight, Aideen, 32, said: “Marion was a grandmother, daughter, sister, and friend to many but, to me, she was a very precious mother. She worked so hard to provide for me, opening her own hair salon and working day and night to make it a success until she fell ill in her mid-30s.
“Mam was invited to take part in a clinical trial 11 years ago for the drug Respreeza and her hospital stays reduced from up to eight times a year to only once every two years. Her quality of life improved immensely.
“In April 2016, mam made it her mission to walk me up the aisle for my wedding. This is something that she would not have been able to do in years previous. It meant the world to me that she could do this and it’s a memory I will treasure forever.
“How can they explain my mother’s sudden death following being taken off the drug. How can they explain away that this was the second of two deaths of Alpha 1 patients since the trial was ended? How can they ignore that is has been licensed by the European Medicine’s Agency. How can they ignore that not one of the 21 died while on the drug?”
“The drug, we have been told, ‘wasn’t value for money’. That clearly put a price on my mother and other patient’s head, a price of €80,000 per year.”
Marion’s father Ned said: “Words cannot describe our sense of loss. Marion could and should have had more time with her family. Respreeza was her lifeline and she would say that on Mondays before her infusion on Tuesdays. Her body would know that she needed it.”