“Our bill is a response to the medicines’ crisis being faced by Irish patients suffering with a rare disease,” said Fianna Fáil’s Primary Care and Community Health Services Spokesperson, John Brassil.

The Health (Pricing and Supply of Medical Goods) (Amendment) Bill 2018 seeks to reform the HSE’s current reimbursement process by establishing for the first time a unique process for assessing an orphan drug for reimbursement in Ireland.

Commenting Deputy Brassil stated: “The bill which is being debated tonight at 2nd stage brings a long-overdue and credible solution to the ongoing crisis surrounding access to medicine for patients with rare diseases in Ireland.

“Currently, orphan and rare drugs are assessed under the same guidelines and procedures as standard drugs – despite the clear differences between the two.

“Rare, high tech drugs will naturally treat an extremely low patient population. To measure their effectiveness using the same lens and under the same criteria, as common conditions naturally causes difficulties. Other EU countries have adapted their processes for this very reason, and I believe it is time we did so now.

“On a daily basis we read in the news or meet face-to-face with patients who suffer from severe and often-life threatening rare diseases and cannot secure access to a medicine.

“Very often this medicine is available across Europe but not here in Ireland. If they are fortunate to be given access to such a medicine, it can take up to two years which in too many cases, is often too late.

“It is not acceptable that citizens suffering from severe illnesses are forced to take to the streets or go public in the media to have their voices heard.

“We have a duty and an obligation to ensure they receive the same treatment and care as any other patient in Ireland. I believe this Bill is both a timely and logical step, and I would welcome the opportunity to work with the Minister for Health to see it enacted as quickly as possible.

“Securing access to high tech medicines is a complex process that cannot be solved with one silver bullet, however our Bill addresses a clear blockage in that process, as set out in the 2013 Act.

“Moving from a quantitative to a qualitative analysis of the impact and benefit of orphan and rare drugs is, I believe, a fairer way of ensuring our citizens get the treatment they need and deserve,” concluded Brassil.