Wednesday 26 September 2018

Health minister under pressure to give green light to allow MS sufferers access promising drug

Karen Hynes from Blackrock in the MSunderstood Cafe, which will help people to experience what it is like to have MS. Photo: Steve Humphreys
Karen Hynes from Blackrock in the MSunderstood Cafe, which will help people to experience what it is like to have MS. Photo: Steve Humphreys

Kevin Doyle and Laura Lynott

Health Minister Simon Harris is under pressure to approve a pilot scheme so sufferers of progressive multiple sclerosis can access a unique new drug.

MS Ireland wrote to the minister last December to highlight a medicine called ocrelizumab which is creating "a great deal of interest and excitement among the MS community".

It is the first drug approved to specifically treat primary progressive MS (PPMS), and the largest supplier of medicines to Irish hospitals, Roche, has offered to work with the Department of Health on a pilot reimbursement system for patients.

Ava Battles, CEO of MS Ireland, told the Irish Independent they want ocrelizumab made available "as soon as possible".

"We are concerned that we have yet to receive a response from him [Mr Harris]. We would like the opportunity to discuss with the minister why access to ocrelizumab is so important as there are currently no other treatment options for people with primary progressive MS."

A spokesperson for the Minister said he is willing to meet representatives to discuss the issue in the near future.

It comes as a pop-up shop opens in Dublin today to give visitors an insight into what it is like to suffer MS.

The 'MSunderstood Café' is an innovative social experiment which will see café-goers take a short walk in the shoes of someone with MS.

The café on Exchequer Street has been designed with an unsteady floor, heavy chairs that are awkward to move, a blurred menu, bent cutlery and almost impossible to unwrap pastries.

Though such a café sounds far from a desirable spot to grab a coffee during a busy work day, the entire point of the experiment is to allow those with no concept of MS to experience the symptoms sufferers endure on a daily basis.

Cameras and microphones hidden within the café, will capture how the public reacts to the strange surroundings in the café.

Karen Hynes (39) from Blackrock, an MS sufferer, helped advise on the project and she believes it will really "get people talking" about the central nervous system condition many have little understanding of.

"I was diagnosed on my 20th birthday in 1998 and I was considered the youngest person in the country to have MS at that time," Karen, a former bank executive said.

"I just couldn't understand how I had this condition back then. I started to get symptoms that included pins and needles in my left foot and within five months I had to sit down on a bus because I had a numb sensation running through my leg."

Karen never let the condition hold her back and she moved to Australia, where she lived when she was 23. She went on to enjoy a successful career in banking, only giving up work four years ago.

A new website, PatientsDeserveBetter.ie, will also be launched today to help those affected by MS demand quick and better access to new medicine.

Irish Independent

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