It was available on the NHS. It was available under the "named patient" scheme which is a bit more complex than just a doctor prescribing it but suggesting people couldn't get it on the NHS is false.
The cost to the patient would have been exactly the same - about £8 per item per month with a range of discounts and exemptions.
Named patient scheme is different. That allows access to a drug before it receives market authorization, not before the NHS funds it. Patients in the UK that could have benefited from Soliris were not able to receive it (without paying full price).
"Up to 70 patients are in the same position as Dianne Illingworth, 41, who have been forced to put their lives on hold, and risk their condition deteriorating, while ministers and officials argue over whether the NHS can afford the drug, Eculizumab, which costs more than £300,000 per patient per year."[1]
"Named patient" does not mean they have to pay full cost for their meds and I'm not sure where you get that from. It's not in the link you supply. That link talks about the cost to the NHS, not to the patient.
> In the meantime, NHS England has established an interim scheme under which new patients – around 20 a year – will get the drug and existing patients already on it will continue to receive it. But patients not currently receiving Eculizumab, such as Dianne, will have to wait for Nice's decision.
The newspaper distorts what actually happened. New patients got it, and existing patients with critical need got it.
Nothing in the link you supplied suggests that patients had to pay more for the med - the link does say that some people were denied the medication. The reason for that denial was a lack of communication from the manufacturer.
"“Eculizumab is an effective treatment for aHUS. The NHS has already recognised this by making it available on an interim basis, pending the outcome of NICE's appraisal. However, before we can make a confident recommendation for routine use, which we estimate would cost the NHS about £58 million in the first year, rising to over £80 million in 5-years, we need more information."
"Alexion insisted that its information about the overall cost of eculizumab be kept confidential and so NICE is unable to share these details of the Alexion submission with stakeholders. We're disappointed about this decision, for which we have not had an adequate explanation."
But note that people who were critically ill did get the med, for the £8 NHS prescription charge. From your link
> A spokesperson for NHS England, said: "Patients who are critically ill and who need Eculizumab urgently will receive it."
So: people who needed it were getting it. At first they were getting it under the named patient scheme and they only had to pay the normal NHS prescription fee; now it's available under an interim commissioning policy from NHS England - so, again, patients only pay normal NHS prescription fees. For a short time some people who were ill but not dying did not get it, but that gap in provision was caused by the manufacturer not communicating with the regulators.
Since you mention the US: how many people were denied this expensive med by their insurance companies?
My point about paying more is that is the NHS doesn't cover it, it's still available at full cost.
We'll have to agree to disagree about patients getting it. aHUS is a terrible disease. To say everyone who needs it got it is untrue. The "critically ill" got it, but what about people who weren't critically ill, but were sick?
The cost to the patient would have been exactly the same - about £8 per item per month with a range of discounts and exemptions.