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Fianna Fáil propose law to make access to drugs for rare diseases 'fairer'


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ACCESS to drugs for rare diseases would be fairer under reforms proposed by Fianna Fáil, the party has claimed.

The Dáil is to debate a Bill put forward by Fianna Fáil TD John Brassil that would change the HSE’s current reimbursement process for so-called ‘orphan drugs’.

These are often expensive drugs that treat diseases that affect five people in 10,000 or less among the population.

Kerry TD, Mr Brassil, said reform of the system is overdue and argues that his Bill is a “credible solution to the ongoing crisis surrounding access to medicine for patients with rare diseases”.

He said that under the current reimbursement system there is no specific allowance for orphan drugs and as it stands pharmaceutical companies “are not even bothering to apply”.

He said: “What my bill is proposing is to look at it in a qualitative manner so that will allow the assessment of these drugs in a different manner.”

One example of a drug this could apply to is Spinraza which is for a rare degenerative neuromuscular condition, Spinal Muscular Atrophy.

Mayo TD Lisa Chambers said this drug is “extremely expensive given the small number of patients it will treat because it’s a rare disease".

But she said that for patients who need it, the only avenue open to them is to contact their local TD to seek their help.

Cork South-West TD Margaret Murphy O’Mahony argued that the Bill would “make the system fairer” and ensure people who need certain medicines don’t have to march outside Leinster House to get noticed.

Mr Brassil said the issue didn’t come up specifically in Confidence and Supply renewal talks between Fianna Fáil and Fine Gael.

He was asked if it is among priority legislation Fianna Fáil is seeking to pass under the agreement to extend the minority government’s time in office.

Mr Brassil said party leader Micheál Martin “has been very active on this particular issue right from the start of this Dáil term so yes he will be pushing this as hard as he can".

The Bill is due to be debated in the Dáil this evening.

Meanwhile, Fianna Fáil has demanded a Dáil debate on Ireland’s Brexit ‘plan B’ as the clock ticks down to the March 29 withdrawal date.

The party’s Brexit spokesperson Lisa Chambers claimed that the government has put all of its eggs in the basket of a deal being secured.

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“All of the projections for Budget 2019 are placed on the central case scenario that there will be a deal in place,” she said.

The opposition party has written to the business committee to request a debate on Brexit readiness “at the earliest opportunity”, however no debate has been scheduled with just days to go before the Christmas recess.

She has also called on Tanáiste Simon Coveney to appear before the Dáil to outline preparations for all outcomes, including for a no deal.

The Government needs to “outline to the Oireachtas and the citizens exactly what contingency planning has been done, what preparations are in place and what is plan B if we need to enact plan B”, she said.

Preparations for a crash out Brexit are being ramped up amid ongoing turmoil in the UK and Mr Coveney was expected to outline additional detail on Brexit preparedness at Cabinet today.

The Government will publish additional details of its contingencies on Thursday, with additional detail also expected from the European Commission this week.

Around 45 pieces of emergency legislation will be needed in the New Year if a cliff-edge Brexit looms in March.

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