The MS Society has launched a petition imploring the National Institute for Health and Care Excellence, NHS England and Roche to come to an agreement on NHS availability of Ocrevus for primary progressive multiple sclerosis (PPMS).

The move follow’s the release of final draft guidelines from NICE rejecting Ocrevus (ocrelizumab) - the first ever treatment licensed for PPMS - on grounds that the drug is too expensive for the benefit it provides.

Ocrevus is a first-in-class, humanised monoclonal antibody designed to selectively target CD20-positive B cells, a specific type of immune cell thought to be a key contributor to myelin and axonal (nerve cell) damage, which can lead to disability in people with MS.

The drug’s approval in Europe in January this year marked the first time a medicine was licensed for use in patients with PPMS, the most debilitating form of the disease, as well as widening treatment options for those with RMS forms of the condition.

For patients with PPMS, treatment with Ocrevus led to a 24 percent reduction in the risk of 12-week confirmed disability progression compared with placebo, and the MS Society says data show the treatment could also delay the need for a wheelchair by seven years.

However, NICE says while clinical trial results show that the drug can slow the worsening of disability in people with the condition, the size and duration of this effect are uncertain.

In addition to this, cost-effectiveness estimates for ocrelizumab, compared with best supportive care, are far higher than those normally considered an acceptable use of NHS resources, it stressed.

“This is devastating news for people with PPMS who urgently deserve access to the first and only licensed treatment which has been proven to slow the progression of this highly disabling disease. The committee has recognised ocrelizumab as an innovative treatment that provides a step change in the treatment of PPMS with a substantial effect on the lives of patients and their families,” said Richard Erwin, general manager, Roche UK.

“We ask that NICE are given the flexibility to consider an indication-specific price for ocrelizumab in PPMS. The challenge with ocrelizumab for people with PPMS could also have huge implications for future access to innovative medicines for people in the UK. We are unwavering in our commitment to people with PPMS and, as we have done with other disease areas, want to work together with NICE and NHS England to find a solution so this decision can be overturned.”

MS affects over 100,000 people in the UK and one in eight people with MS are diagnosed with the primary progressive form.

This means that around 625 people every year could benefit from treatment with the drug in this setting, particularly as there are no disease modifying therapies for this type of MS, the charity notes.

It is now urging the three parties to agree a deal, “so ocrelizumab can be made available on the NHS to everyone who could benefit without delay”.

NICE is backing use of Ocrevus to treat relapsing–remitting MS in adults, having first been turned down by the cost watchdog.