MS meeting cancelled because of politicians’ lack of interest

A meeting to raise awareness of the challenges facing the 400 people living with multiple sclerosis elicited just five positive responses from the 80 public representatives invited to attend.

The information meeting for city and county councillors as well as Oireachtas members was scheduled for yesterday (Friday) morning in the city with up to 15 MS sufferers planning to show up to outline measures which the local and State Government could implement to make life easier with their illness.

“The central aim of this event was to make public representatives more aware of MS and how it impacts on those diagnosed and their families.

“We wanted to communicate how they can help improve the quality of life for people with MS through their role as an elected public representative,” explained Aidan Larkin, regional coordinator for MS Ireland.

“The response we got back is kind of shocking. We’ve had positive responses from five and five others who said they’re unavailable – that’s out of 82. We have people who would have had to make a real effort to be here, people with significant physical issues and we didn’t want to waste their time.

“Who are these people representing, if not the estimated 400 people aged between 15 and 90 who are living with this condition in Galway?

On Tuesday the decision was made to cancel the meeting and MS Ireland sent out an email to councillors, TDs and senators lambasting them for their pathetic response.

The small but vocal group of people who agreed to make their case planned to stick to three or four key messages.

Parking is a serious issue for MS sufferers as many have serious mobility difficulties. With the advent of the public bike scheme many of the disabled parking spaces have disappeared or moved to less convenient locations.

Nationally, a mobility allowance of €270 a month to assist people with transport was removed a year ago and never replaced as promised with an alternative transport scheme.

“Given that 54% of people with MS don’t work or have had to take early retirement due to cognitive issues or fatigue or loss of mobility, that cut really hurts,” insisted Aidan.

The plight of one Galway sufferer hit the headlines last month when Rosaleen Rafter from Kileeneen outside Craughwell revealed that she was being denied medication that cost a tender a day which was vastly improving her quality of life.

The former NUIG administration worker’s campaign to get Fampyra included on the long-term illness scheme so that it will be funded by the HSE has so far fallen on deaf ears.

After taking the drug for two-and-a-half years as part of a clinical trial, she must now cough up the €275 a month cost herself in order to maintain her independence, which is proving very difficult on a pension.

The manufacturer, Biogen, submitted a revised application to the National Centre for Pharmaco-economics (NCPE) for it to be included on the scheme last July and the HSE said it was currently considering the outcome of those talks.

“We understand that 60% of people with MS would be suitable to try Fampyra and an estimated 30% of those would likely be responsive.

“That’s not a huge group but it would be very significant for that cohort who could get some relief,” explained Aidan.

“We would have thought that public representatives would like to be informed about these types of issues.

“For a large number of MS sufferers it’s not their condition that is the most challenging; it’s their environment.”