HSE again refuses paying for Pat Tinsley drug

The campaign to have a potentially life-saving drug provided for Newbridge photographer Pat Tinsley hit a barrier again yesterday, writes Brian Byrne, when the HSE once again turned down paying for  Patisiran (Onpattro®) for the treatment of his hATTR amyloidosis disease.

A letter from the HSE told him that the organisation's Drugs Group had 'considered in detail' the clinical information relating to the drug at its January meeting. But 'found itself unable, at this juncture, to recommend in favour of reimbursement'.

Patisiran is produced by Alnylam Pharmaceuticals, and the letter left the position open for further representations from the company and the various advocacy groups working on Pat Tinsley's behalf to continue an assessment process.

The drug is available in NI, the UK, Europe and the US. A campaign to highlight the need for Patisiran to be approved by the HSE is being continued by a group of Pat's friends.

In a comment last evening, Pat said it was 'bad news' but was as he 'had expected'. Before Christmas, 2021 Calendars based on Pat's work went on sale in many outlets throughout the county, to help raise funds for his treatment. In two years he has lost 23 kilos in weight and suffers from constant dizziness and weakness.

Hereditary transthyretin-mediated amyloidosis is a fatal rare disease that is estimated to affect 50,000 people worldwide. Patisiran is the first drug developed to treat the condition. It was approved for medical use in the United States and in the European Union in August 2018.

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