The decision not to make a drug which slows the effects of multiple sclerosis (MS) available on the NHS is “deeply disappointing”, a charity has said as it launched a petition against the move.
The National Institute for Health and Care Excellence (Nice) announced on Monday that it was not recommending ocrelizumab for treating primary progressive multiple sclerosis (PPMS) in adults.
Publishing its final draft guidance, it said clinical trial results show that ocrelizumab can slow the worsening of disability in patients with the condition, but the size and duration of this effect are uncertain.
It also said the drug was too expensive.
The MS Society said it would petition Nice, NHS England and drug manufacturer Roche to reverse the decision and agree a deal to make ocrelizumab available at a price the NHS can afford.
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The charity said that in clinical trials, patients with PPMS saw an average drop of around 25% in the risk of their disability getting worse.
The treatment could also delay the need for a wheelchair by seven years.
Around 100,000 people in the UK have MS – a chronic, lifelong and disabling condition that affects the brain and spinal cord for which there is no cure.
The primary progressive form affects around 14% of patients at the time of diagnosis, which means around 625 people every year could benefit from ocrelizumab.
PPMS is characterised by symptoms which develop and worsen over time without periods of remission.
The charity said there are currently no disease modifying therapies (DMTs) for this type of MS.
Holly Ford, 25, from Milton Keynes, was diagnosed with PPMS in March and had pinned all her hopes on the drug.
She said: “Having any treatment would mean an awful lot to me.
“You can’t imagine what it’s like to get a diagnosis of PPMS and be told there’s nothing for you.
“I know ocrelizumab won’t make me better but it could stop me from getting worse. I’m already struggling to get around and have to use a wheelchair for longer distances.
“MS is unpredictable and different for everyone, but the thought of losing my independence is terrifying.
“Having treatment would put my mind at ease about the future, and things like starting a family. If I get much worse I will struggle to look after myself, never mind a child.
“Right now this is my only potential treatment to do something about this horrible disease.”
Genevieve Edwards, director of external affairs at the MS Society, said: “This is a deeply disappointing decision, denying many desperate people access to a treatment which may slow down their disability progression.
“MS can be painful and often exhausting, and for many people living with the primary progressive form – which currently has no treatment on the NHS – ocrelizumab offered them a shot at a better future.
“Right now our utmost priority is ensuring everyone who could benefit from this treatment is given that opportunity.”
In June, Nice said it was recommending ocrelizumab for treating the more common relapsing-remitting MS in adults.
For more information and to sign the petition visit mssociety.org.uk/speak-up-for-MS.