On Monday 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.
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 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 per cent 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.
In order to make the drug cost-effective Roche had offered a further discount for PPMS, but NHS rules prohibit the same drug being bought at two different rates.
“Right now bureaucracy is standing in the way of a better future for people with primary progressive MS,” Genevieve Edwards, director of external affairs at the MS Society told The Independent.
“These people have no other option and it’s simply wrong that they’re being denied access to an effective treatment. It just doesn’t make sense.”
The charity is petitioning all parties to strike a deal, adding: “MS can be painful and often exhausting, and now there’s a treatment that could finally help – and even delay the need for a wheelchair by seven years.”
Drug companies will strike confidential deals with the NHS as it is the only way to reach the majority of patients who do not fund their treatment privately.
Nice explained that under the current rules either both uses would need the same discount, or the undiscounted “list price” of ocrelizumab would have to be dropped to the rate the NHS pays.
The latter option would mean the NHS’s discount would no longer be confidential and other countries would see how much of a saving Roche had offered.
“We were unable to recommend ocrelizumab at the price agreed between the company and NHS England, because it was not considered a cost-effective use of limited NHS resources,” said Meindert Boysen, director of the centre for health technology evaluation at Nice.
“We recognise that there is there is a large unmet need for treatments for people with primary progressive multiple sclerosis and we are open to discussions with the company and NHS England to address this.”
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