Hundreds of people sign online petition to get potentially life-saving drug for Newbridge man

Donegal people with an amyloidosis diagnosis waiting on proven patisiran treatment

Appreciation night this Friday for well-known photographer Pat Tinsley

Pat Tinsley

Over 700 people have signed an online petition to urge the Minister for Health and the HSE to make a drug available for sufferers of a rare hereditary condition. 

Newbridge-based photographer Pat Tinsley is 64 years of age and lives with hATTR (Hereditary Amyloidosis) - a debilitating and fatal disease which is ravaging his body and causing his vital organs and nervous system to dangerously malfunction. 

There are also, currently, 20 people from Donegal with an amyloidosis diagnosis who would be candidates for Patisiran, a proven treatment, if it were available.

The petition says: "With a prognosis of 2 to 10 years, time is rapidly running out for Pat while the HSE debates whether his life and 30 others like him deserve to get treated with the new and effective drug called Patisiran which is showing remarkable results with patients receiving it in the US, the UK, Germany and other European countries.

"While the treatment is approved by the NHS in Great Britain and in Northern Ireland, it is not, as yet, approved by the HSE here.

"Pat has lost 50lbs since his diagnosis two years ago and his health continues to decline on a daily basis."

People are being asked to please sign the petition which will be presented to the Minister for Health, Stephen Donnelly and to the HSE.

The petition adds: "End Pat’s suffering and those of others, who ‘exist’ with Hereditary Amyloidosis – it is only an existence, not a life."

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