Fampridine (Fampyra)

MS Ireland's response to HSE statement 

Multiple Sclerosis Ireland is delighted with progress, confirmed by the HSE, on reimbursing Fampridine, or Fampyra, for people with MS who respond positively to the drug. Fampyra has been proven to have a huge impact on walking and mobility, a life-changing drug for many people with MS.

Since July 1st 2014, Fampyra has only been available to people with MS at a personal cost of between €200 and €500 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. For those who had been receiving Fampyra for free up until July 2014, they 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. Forced to live without the drug, for even a short period of time, patients who had been taking Fampyra found their ability to complete even the simplest of tasks severely restricted.

Ava Battles, Chief Executive, MS Ireland welcomed the statement from the HSE regarding a responder based reimbursement programme for Fampridine, “This news brings renewed hope to people with MS that have not been able to access or continue the treatment privately for financial reasons.”

“MS Ireland has been working with people with MS, calling for access to this approved treatment on behalf of our members as it has shown increased mobility and allowed a quality of life that has previously been denied them due to the debilitating nature of this condition. We are thrilled that Fampyra is now accessible for those who respond to the drug.”

The HSE has confirmed that ‘it is in the final stages of putting in place the governance arrangements and processes around a responder based reimbursement programme for Fampridine.

It is expected that reimbursement will be extended where a demonstration of clinical response (based on objective criteria agreed with clinical experts) is recorded and where that clinical response is shown to persist based on objective measurement at 6 monthly intervals.

The HSE expects to confirm the reimbursement date in the very near future once all of the required governance arrangements are in place.'

Fampridine, or Fampyra is an oral drug used for the symptomatic treatment of walking impairment in adults with MS.

Dr Chris McGuigan, one of the investigators in the clinical trials in Ireland for Fampyra, said “People with MS consider their mobility to be their most important function and so as the only therapy available to treat walking disability in MS, this is most welcome news.

“We were involved in the clinical trials programme for Fampyra at St Vincent’s University Hospital and having seen the benefits of this treatment in our MS patients, I am delighted that people living with relapsing and progressive MS may benefit from this treatment,” the consultant neurologist added.

MS Ireland would like to thank all those who have campaigned tirelessly for reimbursement for Fampyra since July 2014. In the recently launched guide to accessing MS medicines in Ireland, the ‘Access to Medicines’ Campaign Handbook, two of the case studies included focus on individuals struggling to self-fund Fampyra. MS Ireland is delighted with this positive outcome for those individuals and for all those who will now be able to continue or resume their treatment. 

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