The UK’s National Health Service (NHS) will not pay for patients with a degenerative form of multiple sclerosis to receive a new drug which can slow the disease and give up to seven additional years before they need a wheelchair. The Independent reports that this was after the National Institute for Health and Care Excellence (Nice), the body which rules on treatments the NHS should fund, ruled that it could not recommend ocrelizumab for primary progressive multiple sclerosis (PPMS).
People living with the condition said this was their only option and could keep the “terrifying” prospect of losing their independence at bay, giving precious time to make decisions about the future.
The report says it is a double blow to them as the manufacturer, Roche, had offered a further discount on the drug that Nice was prevented from considering because of NHS red tape. “You can’t imagine what it’s like to get a diagnosis of PPMS and be told there’s nothing for you,” says Holly Ford, 25, who was diagnosed with PPMS in March this year. While ocrelizumab cannot cure her, it could help delay the symptoms which are already impacting her ability to get around and mean she needs a wheelchair for long 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,” she added.
Around 90,000 people in England have multiple sclerosis, which is a disease where the immune cells malfunction and attack the nervous system, causing mobility problems and gradual disability.
The report says the majority of people have “relapsing remitting” MS where symptoms can disappear entirely for years at a time. Ocrelizumab is one of several treatments available on the NHS and is already discounted by Roche.
Only 14% of patients, like Holly Ford, have PPMS where the symptoms only deteriorate and ocrelizumab is the first and only drug which has been licensed for managing its symptoms – though it is less effective than in the relapsing remitting form.The Independent report