Fampyra

Thursday May 07 2015 09:15 AM

The story to date

Fampyra is an oral drug used for the symptomatic treatment of walking impairment in adults with MS. Since July 1st 2014 Fampyra has only been available to patients at a personal cost of between €200 - €400 per month, a cost which is prohibitive to most of those who had been receiving the drug for free on a named patient basis up until that point. Those receiving Fampyra for free up until July 1st found that the drug had a significant impact on their ability to remain independent as it has been shown to have clear benefits in improving the mobility of those with MS. Many people have since had to reduce their dosage of Fampyra or cease taking the drug altogether due to the personal cost incurred. When forced to live without Fampyra, for even a short period of time, people with MS have found their ability to complete even the simplest of tasks severely restricted.

In early 2013 Biogen Idec received notification that Fampyra would not be reimbursed through one of the HSE’s Payment Schemes as it had not been deemed cost-effective. In July 2014 Biogen Idec made a new pricing submission to the HSE. Negotiations are still underway regarding Fampyra and a decision about reimbursement has not yet been reached.

MS Ireland as well as many of those with MS who have seen improvements to their quality of life as a direct result of this drug have been campaigning and lobbying the Government, the HSE and Biogen Idec on the issues surrounding reimbursement for Fampyra and taking steps to ensure it remains a key topic of discussion.

At the House of the Oireachtas Joint Committee meeting on 12th March 2015, Shaun Flanagan, Chief Pharmacist, Corporate Pharmaceutical Unit (CPU) commented, “As regards Fampridine that has been a difficult assessment process. We have gone back and renegotiated with the company. We have also re-engaged with clinical specialists. We are working to try to agree a protocol that might allow us to extend reimbursement. The particular difficulty with Fampridine is that about one third of patients get a good response, one third gets a partial response and one third gets no response. Clearly, if one could be certain that one was only paying at a reasonable price for the people who get a very good response, one would be more eager to reimburse. We are trying to work towards that outcome. We are hopeful of progress on that in the near future.”

On March 22nd 2015, Gerard Murphy, a Fampyra user, met with Billy Kelleher T.D. and Senator Darragh O'Brien in the Oireachtas where they discussed and applauded Flanagan’s practical approach to allowing Fampyra to be reimbursed. Murphy was impressed by the members and the discussion regarding Fampyra and it was agreed that all those with MS should lobby their TDs immediately and increase awareness of the situation regarding Fampyra.

MS Ireland would like to thank Gerard Murphy and the many others who are working hard to make sure that Fampyra and those who need it are not forgotten and we urge all those affected by this issue to raise awareness of the situation by lobbying their local TD.

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Author: MS Ireland

Tags: ms, access, medication, government

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