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The decision not to manufacture a drug that slows down the effects of multiple sclerosis (MS) available on the NHS is "deeply disappointing," said a charity by petitioning against the decision.
The National Institute for Excellence in Health and Care (Nice) announced Monday that it was not recommending ocrelizumab for the treatment of primary progressive multiple sclerosis (PPMS) ) in the adult.
In publishing his draft final guide, he said that clinical trial results show that ocrelizumab can slow the worsening of disability in patients with this condition, but the size and the duration of this effect are uncertain.
He also said the drug was too expensive.
The Multiple Sclerosis Society has announced that it would ask Nice, the UK's NHS and drug maker Roche to reconsider its decision and reach an agreement for ocrelizumab to be available at an affordable price for the NHS.
MS is unpredictable and different for everyone, but the idea of losing my independence is terrifying
Holly Ford
The charity said that in clinical trials, patients with PPMS have found an average decrease of about 25% in the risk of worsening their disability.
The treatment could also delay by seven years the need for a wheelchair.
In the United Kingdom, nearly 100,000 people have MS – a chronic, debilitating and permanent disease that affects the brain and spinal cord and for which there is no cure.
The primary progressive form affects approximately 14% of patients at the time of diagnosis, which means that around 625 people a year could benefit from ocrelizumab.
PPMS is characterized by symptoms that develop and worsen over time without a period of remission.
The charity said that there is currently no disease modification therapy (DMT) for this type of MS.
Holly Ford, 25, from Milton Keynes, was diagnosed with a diagnosis of MSPS in March and had high hopes for the drug.
She said, "Having a treatment would mean a lot to me.
"You can not imagine what it's like to get a diagnosis of PPS and to know that there is nothing for you.
"I know that ocrelizumab will not make me better, but it could prevent me from getting worse. I already have trouble moving and I have to use a wheelchair over longer distances.
"MS is unpredictable and different for everyone, but the idea of losing my independence is terrifying.
"Having treatment would reassure me about the future and things like starting a family. If I get much worse, I will have trouble treating myself, no matter what a child.
"Right now, it's my only potential cure for doing anything against this horrible disease."
Geneviève Edwards, the MS Society's Director of External Affairs, said, "This decision is deeply disappointing, preventing many desperate people from accessing treatment that can slow their progression.
"Multiple sclerosis can be painful and often exhausting, and for many people living with the primary progressive form – who are currently not treated on the NHS – ocrelizumab has offered them a better future.
"At the moment, our top priority is to ensure that everyone who benefits from this treatment has this opportunity."
In June, Nice said that it recommended ocrelizumab to treat relapsing-remitting multiple sclerosis more common in adults.
For more information and to sign the petition, visit mssociety.org.uk/speak-up-for-MS.
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