The Forgotten People; Sufferers of Rare Diseases Call for Better Care Access
Byline: Petrina Vousden Health Editor
MORE than 150,000 people in Ireland are living with rare diseases, latest figures show - and that's not the only problem they are facing.
Concern about a lack of available treatments is growing, prompting a leading lobby group of academics and patient advocates to call for patients to be given easier access to European care.
The director of the European Centre for Clinical Trials in Rare Diseases at UCC, Professor Brendan Buckley, said one of the main obstacles facing patients with rare illnesses is accessing the expert care they need.
Professor Buckley -who will speak on the topic at a conference at Farmleigh House this Friday -said unlike in other European countries, it was difficult to develop specific treatment centres for rare disease in Ireland due to the country's small population base.
As a result, patients have to go abroad to access specialised treatment.
But Professor Buckley claims the process of accessing funding through the HSE for treatment abroad - which requires filling out a form known as the E112, was too complex for many of the patients it is designed to benefit.
There are an estimated 157,000 people living with a rare disease in Ireland. Thirty per cent of these patients - or just over 47,000 people - will die before they reach the age of five.
Professor Buckley said: 'Availing of the E112 processes requires more knowledge, skill and persistence than it should.
The HSE uses this process to assess and determine whether the cost of treatment in another member State of the EU will be covered. But if you want to get treatment in France or the UK you have to go through that system and it is very complex and difficult.
'If you have a particular rare disease you may hit on a clinician who has seen it before. But with a population of four million you are not going to find clinicians who have dealt with a lot of these patients before, or many patients with rare conditions before. …