Dear Insert Name of TD/Representative

Subject Line: Fampyra: Drug which improves mobility in patients with MS not available under HSE payment schemes

Dear [Insert name of TD/representative],

I wanted to bring to your attention and ask for your help with an important issue concerning people with Multiple Sclerosis (MS). Ireland has one of the highest rates of MS per capita of any country in the world, with over 8,000 people living with MS – or one in every 500 people. We cannot afford to fall behind in the availability of approved MS treatments.

Fampyra, a drug which improves nerve conductivity and effectively reverses many of the debilitating symptoms of MS, was licensed in Ireland by the HSE on 15th January 2014. However the NCPE concluded that it was not cost-effective and were unable to recommend reimbursement. In July 2014, the drug manufacturer, 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.

While the drug is available in Ireland, this effectively means that people with MS who have been prescribed Fampyra by their neurologist can only avail of this at a monthly personal cost of between €200 and €400, which many people simply cannot afford.

The long-term cost of MS disease progression is one of the most important reasons that the HSE should fund Fampyra. For people with MS, increasing disability is not only caused by the disease’s progression but also by the fact that reduced mobility causes muscle atrophy and many other related problems (circulatory problems, reduced bone density, pressure ulcers, etc.) By allowing those people with MS for whom it is effective to stay active for longer, Fampyra will effectively delay the need for other costly treatments and appliances. Fampyra can also save money by allowing people with MS who are currently working to continue to do so rather than claiming Disability Allowance.

The HSE’s decision not to fund Fampyra is short-sighted and, on behalf of all people with MS – as well as their families and carers – in your constituency, I ask you to do everything you can to make this treatment accessible to those who need it.

I join those calling for access to approved treatments for people with MS, particularly those which can significantly impact on a person’s ability to remain independent. Fampyra has been shown to have clear benefits, improving mobility for people with MS. Specifically, I ask that the HSE make Fampyra available through one of the HSE payment schemes. I am asking you to make a stand, put access to life-changing treatments like Fampyra on the national agenda and be a voice for over 8,000 people living with MS in Ireland.

I welcome your response as soon as possible.

Kind regards, [Insert name]