Thread by @MettaFilms

About 6 years ago I was diagosed with rare genetic blood #cancer called polycythemia. Since then it’s progressed & become post-polycythemia vera myelofibrosis. 36 months ago I was also diagnosed with multiple myeloma.

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I have fought every single day to stay alive. I’m alive bcos we belong to #Euratom European atomic energy community - it also deals with medical radiation treatments.

For more on Euratom see here:

theguardian.com/politics/2017/…

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I also rely on the British participation in the ERN’s. These are European Reference Networks which allow collaboration across EU member states and they do essential work on #rarediseases making my, & many other ppl’s, treatment possible.

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If we have no-deal Brexit, here’’s what will happen (and has partly already happened):

We will not be part of the ERN’s any more (the UK jobs which are part of it will go to other EU countries).

I won’t have access to the ERN research trials, meds etc

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Access to Euratom will be similarly denied to us,this affects not just those with rare diseases but, in particular, breast cancer patients, who rely on the BEST available research, info & dosing for their radiation treatment, Euratom helps to provide this

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The government has issued a planning report on various provisions for medical care in the event of no-deal Brexit. Rare diseases were NOT protected in this document and were not sensibly or properly provided for. No real provision was made.

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Therefore, currently, in the event of a no deal Brexit, after March 29th, I will have little to no chance of accessing my medication or research into my treatment - and this MATTERS when you have a very rare disease

My death would be a likely outcome of all of this.

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There are many others diseases in a similar position to me, diabetes & access to insulin for example, but I can speak only for me.

WE MUST not have a no deal Brexit. People will die. I will die. Totally unnecessarily. It is simply not an option.

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If you’ve got this far in my thread I thank you. I have done my best to make clear the current position for me & others with rare diseases. It IS complicated but it IS important

Please at least KNOW what you are asking for when you claim to want no deal

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As I said at the beginning, I’m nothing special. But my life is important to me, I have done my best to fight, the medical team are doing their best and, to date, we have been winning.

I may not be anything spectacular, but my life is important to me.

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I somehow deleted the first tweet on this thread! Sorry!

The thread is an attempt to explain why I will die if I am unable to access my Meds after a no deal Brexit.

This #BMJ article also explains it.

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#Cancer

Just to add, some companies running EU drug trials have said they may allow us to continue but THEN NICE has a problem. NICE can’t allow in unlicensed drugs if patients are not actually ON the trial (which we couldn’t be due to legalities if we’re not in EU). It goes on and on

It’s possible NICE may open up a loophole to cover this but, as yet, this is just talk. It would be a very complicated thing to do & would have to be done very carefully to ensure the RIGHT drugs get through and not anything potentially dangerous.