Donegal Action for Cancer Care (DACC) said it was delighted to receive confirmation that the lifesaving drug Patisiran would now be made available to patients with Amyloidosis.
Also known as ‘Donegal Disease’, Amyloidosis is caused by deposits of abnormal protein – amyloid – in tissues and organs throughout the body.
The confirmation came yesterday from Mr Colm Henry Chief Clinical Officer HSE office.
“This was great news,” said Betty Holmes of DACC.
“When I had been contacted by a local woman, who is an Amyloidosis patient, back in April last year I had never heard of this dreadful disease. We in DACC undertook to help as best we could in our advocacy work to ensure that the lifesaving drug Patisiran would be made available to the patients who needed it.”
Ms Holmes said DACC has written so many letters and emails to all the relevant key professional people who were, and are, in positions to ensure this happened.
“We were relentless in this work. The fact that Patisiran was available to Amyloidosis patients in Northern Ireland and not here was also not acceptable. DACC read up on all relevant documentation to ensure that we knew what we were talking about. Indeed, DACC saw the non-availability of this lifesaving drug as serious discrimination of Ireland’s Amyloidosis patients.”Tags: