Thursday Truths: West Tyrone Westminster By-Election 2018

The nominations for candidates for the West Tyrone by-election next month was closed this week. Standing in the elections are as follows:

Political Party and candidates
The Alliance Party Stephen Donnelly
The DUP Tom Buchanan
The SDLP Daniel McCrossan 
Sinn Féin Órfhlaith Begley
The UUP Chris Smyth

There are many different questions and policies we could be questioning our candidates to see who best meets our representation. One question that is very important to me, considering my fight in recent years for Vimizim, is for access for rare disease drugs and treatment.

The nearly three year battle to get Vimizim on the NHS in the UK and finally approved by Stormont was a gruelling ordeal and not something that anyone who is in urgent need to medical care should ever have to do. It badly affected by health and emotional well-being in those years, especially the final year.

However MPS or Morquio families are not alone in this battle to get treatment available for their various rare diseases. Thankfully I was successful, but many are still on going with their individual fights for their diseases.

Castlederg man Liam McHugh, who is currently campaigning, spearheads one such battle I know of, and raising awareness for a drug called Orkambi for his daughter Rachel’s strain of Cystic Fibrosis. Liam is a man of remarkable determination and insurgence to literally goes the extra mile to raise money and awareness for CF with his many marathons and runs. To-date, Orkambi is not available and Liam is still fighting for it.

I am asking the would-be MP for West Tyrone, what they can and will do to ensure that others do not have to go through the same to get rare disease drugs?

With my fight for Vimizim and Liam’s fight for Orkambi, all the politicians have been great in campaigning for the drugs and signing any pledges needed to support it, but we need more. We need to ensure that other patients do not have to fight I did, Liam currently is and others will need to fight in the future.

Can the candidates figure to ensure that the system is improved and that a fairer, less stressful system is established within the UK and Ireland? People with rare diseases have enough difficulties and stresses in life, without having to take on a nationwide campaign to get the drugs they require. 

Vimizim is approved now across all parts of the UK and Ireland, but Orkambi and other drugs are not. Make a pledge to change the approval system. Give people the drugs they need.

I will be personally sending this blog to the 5 candidates commercing the week of 16th April.


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