A LIFE-SAVING drug for Amyloidosis patients is to be made available within weeks. It is extremely welcome news for those in Donegal suffering from the horrific hereditary condition.
Amyloidosis is caused by the build up of an abnormal protein in the body’s tissues and organs and the drug, Patisiran, is used as a gene silencer and for lowering the levels of the toxic protein that attacks the organs.
Speaking to the Donegal News, James Green from Burt who suffers from the condition said it is fantastic news that the drug will be available from October 1 and thanked the HSE and everyone involved in expediting the process.
Patisiran was approved by the HSE in June on the condition that a managed access programme was put in place.
On Friday morning Betty Holmes, Chair of Donegal Action for Cancer Care received the news from the Office of the HSE’s Chief Clinical Officer, Dr Colm Henry that this process has been completed.
Ms Holmes was informed: “The managed access process has now been completed. There are some final steps that are being completed and I have been informed that the drug (Patisiran) should be available in hospitals from the 1st of October.”
Amyloidosis, which is so prevalent in Donegal that it is also known as ‘Donegal Amy’, causes heart failure and nerve damage leading to paralysis, incontinence and wasting and it severely impairs virtually all aspects of daily living.
Up until now Patisiran has been used in the UK and the north but has not been available in the Republic despite the prevalence of the disease in the north west.
The finer details of how the drug will be administered still have to be ironed out but Mr Green said they are looking forward to Donegal patients receiving treatment as soon as possible.
He hopes that the availability of the drug will encourage others who have a history of Amyloidosis in their family or have symptoms to seek genetic testing and speak to a doctor as early diagnosis is key. For support and information on Amyloidosis you can reach out to the online support group on Facebook called ATTR Amyloidosis Ireland Support Group.
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