Need for Fampyra to be included in drugs scheme


The need for the MS drug Fampyra to be included in the drugs payment scheme was highlighted today in the Dáil by East Galway TD Paul Connaughton who raised the matter in a topical issue debate.
Speaking in the chamber, Deputy Connaughton said that he had been contacted in recent months by a number of MS sufferers who have seen dramatic reductions in their quality of life after a medical trial of the MS drug Fampyra ended last year.
‘Those who had seen benefits from the drug were informed that they would have to pay over €270 per month, approximately €10 per day, to continue to benefit from the drug as it is not funded by the HSE under the drugs payment scheme.
‘I have contacted Minister Varadkar on a number of occasions in relation to this and know that MS patients all across the country have seen remarkable benefits from this drug and would urge the Minister to ensure that it is made available for MS patients as soon as possible.
‘The drug is manufactured by Biogen and is specifically targeted at improving the walking ability of adult MS patients. The drug is authorised in the EU since June 2011 and in August 2012 the National Centre for Pharmacoeconomics decided not to authorise the drug but noted that studies were underway to assess the impact of Fampyra on walking and quality of life. I understand that a second application to the HSE to have the drug recognised under the drugs payment scheme was submitted in July of last year.
‘The human cost and the cost to families of this drug not being available to MS patients is high. It would appear that the drug was and is particularly beneficial in terms of mobility and the people I have encountered who are no longer able to get the medication have reported that they cannot walk long distances, that they need to rest more often and their balance is much reduced.
‘When one considers the cost to the health service of dealing with fractured bones which result from a fall, added to the human pain and misery, the cost effectiveness of this drug is much enhanced.
‘It is only when you read or listen to the human stories of the people involved that you fully understand how the non-availability of this drug is really impacting on people’s lives. I was contacted recently by one woman whose life has been significantly curtailed since she finished on the drug, she can no longer walk as far as she once could and her balance is greatly affected, which makes her more fearful in terms of walking and greatly reduces her independence.
‘Another woman who wrote to me spoke of her anger at being failed by the state, particularly as she knows that many others are in a similar position, having their lives curtailed because of decisions made purely on economic grounds when there is a very human cost to the decision.
‘Indeed for some people the drug is the difference between remaining mobile and able to work and being immobile and on Disability Allowance. Surely such factors should also be taken into account by the National Centre for Pharmaco-economics when determining if a drug is cost effective or not.’
Speaking after the debate, Deputy Connaughton said that he is disappointed that there is no end in sight for people who find themselves in this predicament. ‘It seems very unfair that these people, who saw real and tangible benefits from the drug, can no long access it because of the prohibitive cost. I will be pushing the Minister to get a timeframe for a decision on Fampyra and urging him to ensure that it is covered under the national drugs scheme.’