Fianna Fáil TD for Mayo Lisa Chambers says a new Bill will improve access for people with rare diseases to essential medicines.

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.

Deputy Chambers explained, “I’ve been working very closely with 9 year old Grace O’Malley who is one of two Mayo children waiting for a decision to be made on Spinraza, a drug to treat neuromuscular conditions.  Despite their families, their local communities and TDs raising their cases, there is still no movement on the issue.

“There is not a community across the country which is unaware of the lengths that families have to go through to secure life-changing medication for children and adults that they know.

“The Bill that my party brought forward this week brings a credible solution to the table and will improve access to medicine for patients with rare diseases in Ireland.  It differentiates orphan drugs, which are only used treat very specialised cases, from standard drugs, which are used in more common conditions.  Other EU countries have adapted their processes and we should follow suit.

“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.

“People with life limiting conditions, and parents of sick children should not be forced to travel to Leinster House, take to the streets or go public in the media to get access to treatment.

“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.

“If the law were changed as envisaged in this Bill, a child like Grace wouldn’t have to protest outside the gates of Leinster House to get the medication she needs.  Orphan drugs for rare diseases would have at least some chance of being approved,” concluded Deputy Chambers.