MULTIPLE SCLEROSIS SUVERERS are holding out hope that the ‘wonder drug’ Frampyra will soon become available by the HSE again.
Since the end of last month MS sufferers taking the drug have had to face a bill of €500 a month to keep on it.
It had been available to a number of sufferers for free for the past two years but was removed after the HSE said the manufacturer could not justify the prices in order for it to be refunded.
Tom Curran, the partner of the late Marie Fleming, is campaigning for the drug to be available at a reasonable price for MS sufferers.
He described it being withdrawn from the General Medical Scheme as “kicking the crutches from underneath sufferers”.
Manufacturer Biogen Idec met with the HSE recently to discuss a potential revised application.
The HSE told TheJournal.ie that it expects Biogen Idec will submit a revised application.
The HSE will then re-consider the application in as timely a fashion as possible in line with the agreed procedures and timescales for the assessment of new medicines.
Curran said, “the least we are asking is that some sort of arrangement could be arranged for the people who are already on it.
It’s a huge psychological problem as well and the stress affects MS badly- anytime Marie got stressed her MS would get worse.
He added that, “Biogen are not in a position to tell us how many people were on the trial but I know that there are around 20 people who now have to pay the full price.”
He described the results from the drug as ‘miraculous’.
Fine Gael TD Regina Doherty made the point that without access to this medicine, some people will no longer be able to work and so will be entitled to a €785 per month disability benefit payment.
Curran also said that the long term effect of taking the drug would mean some people might not need the same amount of help from the State, so it would be an investment by the health service.
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