The Forgotten People; Sufferers of Rare Diseases Call for Better Care Access

Daily Mail (London), November 29, 2010 | Go to article overview
Save to active project

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.

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
Loading One moment ...
Project items
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

Cited article

The Forgotten People; Sufferers of Rare Diseases Call for Better Care Access
Settings

Settings

Typeface
Text size Smaller Larger
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

While we understand printed pages are helpful to our users, this limitation is necessary to help protect our publishers' copyrighted material and prevent its unlawful distribution. We are sorry for any inconvenience.
Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

Cited passage

Welcome to the new Questia Reader

The Questia Reader has been updated to provide you with an even better online reading experience.  It is now 100% Responsive, which means you can read our books and articles on any sized device you wish.  All of your favorite tools like notes, highlights, and citations are still here, but the way you select text has been updated to be easier to use, especially on touchscreen devices.  Here's how:

1. Click or tap the first word you want to select.
2. Click or tap the last word you want to select.

OK, got it!

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.

Are you sure you want to delete this highlight?