The health service has been accused of discrimination after a new drug was blocked for NHS patients with the most debilitating form of multiple sclerosis just weeks after it was approved for the most common form of the disease.
Clinical trials found that the drug could delay the need for a wheelchair by seven years if detected early.
However, health cost watchdog NICE will announce today that Ocrelizumab is too expensive for patients with Primary Progressive MS (PPMS) in England and Wales, even after drugmaker Roche offered to charge less for the drugs they would use than for those used by other MS patients.
In June the watchdog approved the drug for use in patients with relapsing remitting MS (RRMS), a more common form of the condition, for which several treatments already exist. There are no existing treatments for PPMS.
Penalised by bureaucracy
Critics said PPMS patients are being penalised by a beaucratic rule that makes it harder for a patient to get access to new treatments when no existing drugs exist for their condition, when they need them most – and easier when there are already alternatives available.
In Scotland, the Scottish Medicines Consortium decided not to recommend ocrelizumab for RRMS in July. Roche has withdrawn its application to provide the drug for PPMS patients in Scotland for now.
NICE’s decision on whether a treatment is cost effective is largely based on how it compares to the cost of alternatives – and where no alternative exists, that cost is zero.
“This is discrimination and people should be protesting about it,” said Professor Gavin Giovannoni, consultant neurologist at Barts and the London School of Medicine and Dentistry.
“It is frustrating that an effective treatment that can help slow the disease has been developed and made available across the globe yet here people will continue to suffer disability worsening because of an archaic and inflexible medicine assessment system,” added Prof Giovanni, also of Queen Mary University of London.
Genevieve Edwards, of the MS Society added: “This is a deeply disappointing decision and it doesn’t make sense.
“Bureaucracy is standing in the way of a better future for people with primary progressive MS. These people have no other option and it’s simply wrong that they’re being denied acess to an effective treatment,” she said.
The MS society has launched a petition calling for NICE, NHS England and the drugmaker, Roche, to “agree a deal that will make Ocrelizumab available at a price the NHS can afford”.
About 100,000 people in the UK have multiple scleroris. Relapsing-remitting MS (RMMS) is the most common type, accounting for about 85 per cent of patients, and is characterised by episodes of new or worsening signs or symptoms followed by periods of recovery.
Primary Progressive MS (PPMS) affects around 15,000 people in the UK, about a fifth of whom could benefit from Ocrelizumab – for whom the condition is less advanced and the drug will help. It will also help hundreds of new people diagnosed with PPMS every year.