Living in the USA equals a leg up on Benlysta.
While I have an upcoming post titled "Made in the USA", in which you can learn everything you ever wanted to know about manufacturing pill bags in the United States of America, I figured I should first do a post about LIVING in the USA, based up on this article that a friend forwarded me recently. Looks as though Benlysta wasn't welcomed with open arms in the UK as it was here in the US.
It appears that Nice, the National Institute for Health and Clinical Excellence, and also the Scottish Medicines Consortium, has rejected Glaxo-Smith Kline's Benlysta, thus denying patients access to the drug. The reason? As Nice chief executive, Sir Andrew Dillon says, "...the evidence considered did not persuade the committee that belimumab (Benlysta) provided enough health benefit for patients in view of how much the NHS would need to pay for it compared to standard care, as the cost of the drug in relation to how well it works is very high," said Sir Andrew in a statement.
It appears that Nice, the National Institute for Health and Clinical Excellence, and also the Scottish Medicines Consortium, has rejected Glaxo-Smith Kline's Benlysta, thus denying patients access to the drug. The reason? As Nice chief executive, Sir Andrew Dillon says, "...the evidence considered did not persuade the committee that belimumab (Benlysta) provided enough health benefit for patients in view of how much the NHS would need to pay for it compared to standard care, as the cost of the drug in relation to how well it works is very high," said Sir Andrew in a statement.
Simon Jose, general manager of GlaxoSmithKline UK, and also president of the Association of the British Pharmaceutical Industry, said he recognised that difficult funding decisions had to be made because the NHS had limited money. But Nice should not compare belimumab (Benlysta) to cheap, older medicines that are now out of patent. That, he said, "fails to recognise the benefit of this clinically proven medicine".
He said: "These are devastating decisions for patients with lupus whose disease is currently uncontrolled by existing therapies. By denying access to belimumab (Benlysta), which is the first treatment specifically developed and licensed for lupus in over 50 years, UK patients are being left behind those in other countries including the US, Germany and Spain who already have access to this medicine."
Click here to read the whole story, and let's hope that eventually our friends across the pond get approval for this and any future drugs for lupus. When I think about all of those wonderful lupus patients I met at the Living Well seminar I did in Cambridge...it breaks my heart. Benlysta could be a lifesaver!
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I know a guy through a mutual friend who, like most men who have lupus, has severe organ involvement which current treatment in the UK can't help. He really is crippled by it and hasn't been able to take a proper breath in years thanks to constant pleurisy. He's been told he has to go on Benlysta if he's to stand any chance of his lupus not killing him but, thanks to the NHS, won't be able to get it. He's thought about going to the US for it but would never be able to afford the trip.
It's like the TNF alpha meds. Everyone knows they're the last resort for some people but they really do work. However, they cost over £200 a tablet, something that the NHS isn't happy about.
Saying all that, I'd hate to be in you guys' position of having to pay for meds. Where I live all prescriptions are free as well as everything else. Which is a good thing! We reckon, at our last estimate, my brother has cost the NHS £400K plus over the last 7 months but, without it, he would have been dead.
Thanks for sharing - always good to get another perspective on these things. Best of luck to your friend. Ideally - there's another available option that's just as good out there. Maybe down the road, too!