Posted on 05/05/2018 9:58:31 PM PDT by Berlin_Freeper
A six-year-old girl has written to Theresa May asking if she and her sister can have a new drug that could potentially prolong their lives.
Both Imogen Fare, 6, and her two-year-old sister Annabelle suffer from cystic fibrosis (CF).
Imogen, who lives with her family in Conwy, Wales, has written to Theresa May asking for access to the drug Orkambi.
She wrote: ‘Dear Mrs May, I have C.F. so does my little sister Annabelle. We would really like Orkambi to keep us well and help us live a long and happy life.’
‘We both like swimming and playing outside love from Imogen and Annabelle.’
(Excerpt) Read more at metro.co.uk ...
Good luck honey. Ask Alfie Evans how that worked out.
After what happened to Alfie, I doubt Theresa May will lift a finger.
We must let doctors make these decisions. It is what the UK and EU government say along with many in the Catholic and Anglican Church. Also for some reason traveling to America would put their lives in danger and that would be a violation of their human rights.
This will be interesting is it gets serious media attention.
Prince Harry needs his royal wedding to be the best even if that means no medication for you.
Well, see Alfie was a white boy.
These are white girls. May will probably make sure they get the drug.
When it’s government socialized medicine, rotsa ruck to doctors who buck. Doctors are really glorified bean counters in this model.
And the pharma company? Here is my guess: they HAVE to stand pat, or else they won’t get a livable income (consider the cost of all the research it took) off of the medicine even from people who could pay. It’s all ugly politics. My guess is that if it were up to the pharma company’s druthers alone, they might well support a lot of charity cases. The secular left hates charity; it tries to subsume the role of charity and does it very badly.
yeah, because Doctors AND Churches NEVER make a mistake.
Dude, get a clue.
The biggest mistake made by legacy churches (those that remember fondly the misadventure of church-government admixture since the third century) is of appointing governments to be full ministers of God as it were.
That’s impossible. That’s a recipe for bumbling nannies at best, and for twisted ideas of vengeance at worst.
This was the official line of the Cardinal that oversees much of the UK along with the EU. I was being sarcastic. One should always err on the side of life. Examine the Groningen Protocol and see that it is being used all the time in the EU, just under a different name.
I have heard that far less than 1% of all drugs ever make it to market. A rare drug like this is also expensive because it takes up production space which could make millions of pills that treat high blood pressure or another common ailment, which they could sell at 10 cents a pill and still turn a profit.
I guess we need to ask: what agencies are to be appointed for the purpose, and what are their role? As on earth in practice, resources will run out long before any approach to perfection.
My admonition to churches is to get back in the gospel business, and that means if you need to raise funds and privately negotiate with pharma companies to git-r-done in the name of the Lord, then DO it... but God must get the glory here.
The wholesale acquisition cost for the cystic fibrosis (CF) treatment now clocks in at $20,919 for four, 28-tablet boxes, according to an investor note from Cowen & Co. analyst Phil Nadeau. Patients ages 12 and up are supposed to take Orkambi twice daily, giving it an annual bill of $251,000 before rebates.
Aw, c'mon... at least the MIDDLE finger.
The billions of pounds the UK spends every year maintaining the royal residencies and providing for their lifestyle would pay for the care of thousands of sick children.
We have calculated that your expected future contributions to the Glorious Socialist State will not compensate for the expenditures you propose. Your request for medication is therefore rejected.
You are hereby required and directed to neither seek nor accept medical care other than that provided by the National Health Service. You are not permitted to leave the country.
Thank you for writing.
-Theresa May
Dude, I think he was being sarcastic.
the girls should write Vertex instead of May. Surely they have an ongoing longterm use trial the girls could qualify for at no expense to them? The patents run into the 2020’s so no generic is possible.
We could always trade ten muslims to England for every one person who doesn’t want to live under their socialized medicine system. I’m open to upping the number of muslims.
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