At 7am, I wake up and, while most people are starting their days, having breakfast and making their way to work, I – like the 10,400 people in the UK with cystic fibrosis – am beginning my daily treatment regime. For me, this involves a concoction of 30 tablets to fuel my morning, each with their own variety of debilitating side-effects, from sickness to dizziness and fatigue.
A lot of money to develop these drugs came from the charity and advocacy work of thousands of people living with CF who are now being screwed by the companies who benefited from their support.
'These drugs, developed by the American pharmaceutical company Vertex' yes but with lots of funding from the Cystic Fibrosis Foundation that now acts more like a venture capital fund than the non-profit charity founded by patients' families and doctors to serve their needs.
If the company are not willing to reduce their price (and NHSE negotiations have failed) that means others are willing to pay the price and a reduction will create disparity- especially since the 104k figure is now public (strange decision to publish this figure)
Politically this is how the cancerdrugsfund formed as cancer drugs are not cost-effective by definition by NICE......
NICE and SMC are not the routes through which rarer diseases should be funded as they are highly unlikely to meet cost effective criteria as they are always expensive because they treat fewer patients.
Apologies your majesty. I've suffered too much to accept friendships. I'm sure nobody needs my friendship. I'm a material man living in a material world.
Newsflash, drug companies put a price on every human beings health. Genetic disorders are just more astonishing with respect to cost per patient, because they’re are far fewer patients.