Lowry praised for helping patients with rare disease

Deputy Michael Lowry has been thanked for his ongoing representations on behalf of people suffering from Hereditary Amyloidosis. His consistent efforts have culminated in funding being secured for the drug Patisiran through the HSE Drugs group committee.

Patisiran is a life saving drug for people with Hereditary Amyloidosis, also known as hATTR Amyloidosis.

There are approx. 35-40 people in the Republic of Ireland suffering from Hereditary Amyloidosis including Tipperary, Kildare, Cork and Donegal and anywhere in between.

There are many different types of this disease. It is a life threatening disease which has no cure. Amyloidosis is the name for this group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. The build-up of amyloid proteins (deposits) can make it difficult for the organs and tissues to work properly.

Patisiran, having been approved, gives hope and longevity to those with hATTR Amyloidosis. For the other types of Amyloidosis sufferers, suffering this terrible blood disease, this funding also gives hope to those affected, in case of future treatments coming out of trials.

In a personal message to Deputy Lowry, a hATTR Amyloidosis patient said: "Michael, many thanks for your support in achieving funding for the drug Patisiran. You have helped in securing funding for the drug Patisiran through the HSE Drugs group committee also HSE EMT group for Patisiran to be made available and funded by the HSE for Irish Patients and supported the Hospital pricing approval of Patisiran (Onpattro). You have helped in changing the lives and outcomes of many families in the Republic of Ireland of whom a family member suffers from this terrible disease Hereditary Amyloidosis (hATTR). The drug was available only to citizens of NI and England but now it is available to all of Ireland."