Marion Kelly, 53, a grandmother from Nenagh, Co Tipperary, died on Friday, two weeks after the death of Anna Cassidy, from Co Donegal. Both women had been on Respreeza for 11 years prior to October 31.
However, for the past month, none of the 21 patients with Alpha-1 antitrypsin deficiency have been able to access it because of a row between the HSE and manufacturer CSL Behring over who should pay the administration fee.
Gerry McElvaney, the patients’ respiratory physician, said he was “very worried that two of our patients have died in the past three weeks”. “I’m not saying they died because they were off the drug, but if they’d been on it, we’d have felt we had done all we could to keep them alive.”
He said his patients “felt better when they were on it”, but a lot of them “felt very bad” when they came off it.
“It could be psychological, but you would have to wonder. There is no experience anywhere in the world of what happens when people stop the treatment,” he said.
Johnny Hannan, from Mallow, Co Cork, who has Alpha-1 and is spokesperson for the A1 Action Group, said he was told by the HSE on Saturday that it would cover the administration cost for the next six months when CSL is due to begin another trial, though with no guarantee all the patients will qualify. However, the HSE would not be administrating Respreeza, so patients are unclear as to how and when it might happen.
Prof McElvaney said the Alpha One Foundation, of which he is chair, would contact the HSE first thing today to “iron out” how the drug will be administered. “Ideally we would like it done in patients’ homes, particularly at this time of year,” he said. However “if it came to it”, he would administer the drug in Beaumont Hospital, where he is based.
Mr Hannan and Prof McElvaney spoke of the devastating impact the deaths have had on the remaining patients, who have known each other for more than a decade. The State has refused to reimburse the drug which costs about €84,000 per patient per annum.