I am in the north of Ireland, in Greencastle outside Omagh.
I am on a managed access programme to access Vimizim on the NHS.
I have been on this drug since November 2016. Now, it is by no means a cure of my rare disease, but it has increasingly enhanced the quality of my life and ensure I have more energy and improved health to become more productive in society.
Family and friends and see the improvement it has made to my life in such a relevantly short period of time. Not just physically, but my emotional well being too.
Even strangers in the streets, who don’t know me, but have followed my journey, see the difference in me.
HSE transparency on orphan drugs must happen – Martin Kenny Sinn Féin.
Posted by Martin Kenny Sinn Féin on Thursday, March 8, 2018
It is cruel and wrong to deny access to Vimizim for anyone who has Morquio that needs it. It is cruel and wrong to not allow our citizens to have the same quality of life as everyone else.
It is wrong to deny this drug, which is manufactured in Cork (Thursday Truths: A Cruel Irony), but shipped out of Ireland.
Last week, due to unforeseen circumstances, I was unable to get Vimizim. So it has now been 13 days since my last infusion. In such a short period of time, my body is definitely missing it this week, as I am more tired, short of breath and that little bit more irritable towards people around me. I am looking forward to the top up tomorrow!
This is a clear example of how important this treatment IS and why it needs to be available for everyone with Morquio who needs it. In just 13 days, I am slowing up without it, imagine a life-time without Vimizim in Ireland…..