Pat Tinsley and hereditary amyloidosis
Senator O'Loughlin spoke movingly about her friend Pat Tinsley and used his case to highlight hereditary amyloidosis and the need for treatment and awareness.
In regard to allegations being made by Members about people who are outside the House, for the benefit of Members I am going to circulate the guidance on that issue. There have been a lot of court cases about the way Members have brought up issues. Members can bring up issues; that is the job of the Seanad and the Dáil. It is your job, but you must do it in a way that protects the House. I ask Members to be mindful of that.
Comment on this
I want to tell the Cathaoirleach, the Leader and Members of the House about my friend Pat Tinsley. In many ways, he is the heart and soul of the community in Newbridge. Over the past number of years every sporting and community gathering was defined by him as a local photographer. Sadly, that has not happened in the past 18 months because Pat has been in declining health. He has been diagnosed with a rare disease, hereditary amyloidosis, which attacks the nervous system and organs. Without treatment it leads to organ failure and death.
There are 30 people suffering from this illness in Ireland. There is treatment. An infusion of patisiran every three weeks would be a life support for all those who suffer from this illness. It is available in Northern Ireland, the UK, across Europe and the United States, but the HSE has said it is a novel drug and is not covered by the National Treatment Purchase Fund.
As stated by Pat, penicillin was a novel drug at one point in time. In 2018, Irish patients with a rare disease only had access to 29% of the orphan medicinal products licensed by the European Medical Agency, as compared with 92% in the UK. Irish people have been left behind.
I acknowledge the recently established HSE working group on amyloidosis to develop a model for future diagnosis and care. We are at a crucial point. Reimbursement needs to be examined for the purchase of treatment abroad. We need access to treatment in Ireland. I ask the Leader to ask the Minister for Health to come to the House to debate treatment and access to these drugs for those who need them, such as Pat and his 29 colleagues.