Darragh O'Brien (Fianna Fail) | Oireachtas source

I thank the Minister for attending the House. He outlined the studies from the National Health Service in the UK, from the Netherlands and from other countries that claim that Fampyra does not have a positive effect on the symptoms of MS. While I am not a medical doctor, I have testimonies to the contrary from 15 women. The Multiple Sclerosis Society of Ireland, MS Ireland, informed me that up to one third of those suffering with MS have found mobility improvements after taking this drug. Yesterday, I had an e-mail from a lady who since July has paid €279 a month for the drug, €2,115 in total, to enable her stay on in work.

We can argue the toss about whether the HSE or the National Centre for Pharmacoeconomics believes that this drug works or does not work. In his letter to me on 19 February, the Minister stated that while he appreciated that some might take the view that the taxpayer should reimburse every licensed medicine for whatever price the drug companies demand, he hoped I would appreciate that the better interests of the health services require that we reimburse only the most effective medicines and only at a fair price. I completely agree with him on this. I never once in my correspondence to the HSE or the Department of Health, or in contributions here on the matter, stated that we should have open season, approving every drug at whatever the cost. However, Fampyra comes to €279 a month. The evidence that I have, for what it is worth, and the testimonies from MS sufferers who have used it is that they are extremely distressed by the position on the availability of this drug on the general medical services scheme.

Since 25 July, the HSE has been in possession of a revised submission from Biogen, the drug’s manufacturers. It is now nearly December. Whenever we ask the HSE when a decision will be made on this matter, no timeline is given. If the HSE firmly believes that Fampyra is not a useful drug, then it should make the decision to that effect and inform us that is the case. However, I argue against such a decision and urge the HSE to get off its hands - it has had the revised proposal from the drug’s manufacturer since 25 July - to make a decision. We are not talking about a whole hill of beans either, as the cost of the drug comes to €279 a month, and this will cover 15 MS sufferers who reckon the drug works for them.

The only way I am able to get a proper answer on this is by having the Minister in the House to address the matter. The ladies in contact with me, as well as MS Ireland, have not got that type of response from the HSE, however. MS Ireland, I can assure the Minister, is not advocating on behalf of any drug company to make money off the back of the taxpayer. It wants it for its members who believe and have shown that this drug has immense benefits and has improved their mobility, enabling them to be independent. I have spoken to MS sufferers who are back to work because of taking this drug. Others who cannot access this drug are no longer in work, unfortunately.

After these short statements today, I hope the HSE at the highest level will examine this matter and make a decision quickly on it rather than stringing people along.