Petition Urges NHS England to Make Ocrevus Available for PPMS Patients

Petition Urges NHS England to Make Ocrevus Available for PPMS Patients

More than 21,000 people have signed a petition calling for Ocrevus (ocrelizumab) to be made available by the National Health Service (NHS) in England for people with primary progressive multiple sclerosis (PPMS).

According to an MS Trust press release, the letter was signed by the MS Society UK, MS Trust UK, Shift MS, and leading neurologists, and was given to the National Institute for Health and Care Excellence (NICE), NHS England, and Roche (Ocrevus’ manufacturer) urging them to act to make the treatment available.

Currently, no approved treatments for PPMS exist. This form of multiple sclerosis causes disability considerably faster than other forms of the disease.

Clinical trials have shown that Ocrevus has therapeutic promise in PPMS. A Phase 3 trial, called ORATORIO (NCT01194570), in PPMS patients showed that Ocrevus reduced the relative risk of disease progression by 25%, compared with placebo, an important achievement given the fact that no other therapy so far had been able to slow disability progression in these patients.

Ocrevus also reduced the volume of chronic brain lesions and total brain volume loss in PPMS patients.

Yet, in September 2018, NICE announced that it would not be recommending ocrelizumab as an NHS treatment in the U.K. for early PPMS.

“We’re being denied something that could help,” Holly, who was diagnosed with PPMS in March 2018, said in an MS Society press release.

“It’s so frustrating. … The toughest thing is not knowing how to plan for the future. I’m still young and I want a life and kids, but I have no idea how bad things will get,” added Holly, whose last name was not given in the release. “The fact people like me are being denied something that could help us stay as we are — even if just for a few years — is devastating.”

In October 2018, NICE announced that it was pausing the publication of final guidelines for Ocrevus for PPMS treatment. Further discussions have taken place among NICE, Roche, and NHS England on the matter; however, they have not come to a deal.

According to the MS Society release, although Ocrevus can be paid out of pocket, it costs £19,000 (about $24,600) per year, which is not affordable for most patients or their families.

The petition, delivered by MS Society UK, calls on NICE, NHS England, and Roche to make Ocrevus available on the NHS in England, as it has the potential to change the lives of thousands of people with PPMS and their families.

“Living with primary progressive MS can be painful and exhausting, and there’s finally a treatment that could help,” said Genevieve Edwards, director of external affairs at the MS Society. “With the potential to delay the need for a wheelchair by seven years, ocrelizumab offers people hope for a better future. But right now thousands of people are being denied that opportunity.”

“NICE, NHS England and Roche could put this right, so it’s vital they reach a deal. This could be life-changing for thousands, and more than 21,000 agree — ocrelizumab must be made available to everyone who could benefit, at a price the NHS can afford,” Edwards concluded.

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  1. Senator says:

    I`m crossing my fingers for my brothers and sisters with PPMS that Ocrevus will finally be approved for them. I don`t believe the people making these decisions realize how painful PPMS can be and this being the only drug for it. Why was it approved for RRMS patients when they already had drugs for their disease ? Please approve it and relieve the pain and suffering that they are experiencing.

  2. Christina in the USA says:

    The price listed on the Internet is nearly $17,000 per vial in the US. No Medicare drug plans cover it, but I will likely get it via the exception process. Was told my cost would be an $8.50 copayment. The product does not contain a preservative, so I presume during the first year I will get three vials. My overall sense I seen on the Internet is that this drug will be cheaper, about $60,000 per year, compared to what Medicare and Medicaid pay for my Avonex now, which is $7200 per four weeks, However, the price does not include hours of hospital outpatient monitoring, which will likely be more than the putative savings. I have Medicaid, so I anticipate a $3 copayment. My ability to have this “sweet” setup is I live in a liberal state with expanded Medicaid, covering those with disabilities with higher incomes. The real cost is that I must remain relatively poor. I had to give up the thought of children because no one wants a partner who is not working, let alone sick. We could not marry because his income would end my “sweet” deal. I had to leave work to remain poor enough to receive Medicaid, not something I ever wanted to do. I am sure the NHS makes decisions to keep costs low, including certain drugs, and the price in light of the scientific findings did not justify the costs. The US needs more of this type of cost containment.

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