Today the Scottish Medicine Consortium (SMC) approved ocrelizumab as the first treatment on NHS Scotland for people with early primary progressive MS. The announcement follows a submission made to the SMC from a group of organisations, including us.
Ocrelizumab was made available on the NHS in Scotland as a treatment for people with relapsing remitting MS in December 2018.
Who will be able to access ocrelizumab?
Ocrelizumab has been approved for people living with early primary progressive MS. Early primary progressive MS is defined by:
- MRI scans that identify inflammation or new or enlarging lesions - doctors will sometimes refer to this as ‘active’ disease
- evidence of level of disability or an ‘EDSS’ score of more than 5.0 and living with primary progressive MS for less than 15 years, or
- an EDSS score of 5.0 or less and living with primary progressive MS for less than 10 years.
Defining early primary progressive MS depends on the person's level of disability which is assessed using the Expanded Disability Status Scale (EDSS). EDSS is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. Scoring is based on an examination by a neurologist.
People can expect to see ocrelizumab becoming available in health boards in Scotland from around three months time.
What about England, Wales and Northern Ireland?
SMC is the organisation responsible for approving medicines for use on the NHS in Scotland so today’s announcement applies to Scotland.
The National Institute for Health and Care Excellence (NICE), the body responsible for approving medicines for use in the NHS in England, approved ocrelizumab for early primary progressive MS in June 2019. This decision followed our campaign calling on NICE, NHS England and the drug manufacturer Roche, to find a deal to allow access to the drug on the NHS.
Following the NICE approval, authorities in Wales and Northern Ireland have endorsed this recommendation, meaning ocrelizumab should be available in both nations for people with early primary progressive MS.
We’ll continue to work across all nations to ensure ocrelizumab is made available to all those across the UK who could benefit.
A hugely important development
Morna Simpkins, director of MS Society Scotland, said:
“This is great news and a hugely important development for people diagnosed with primary progressive MS in Scotland.
“We want every one of the 11,000 people in Scotland living with MS to have access to the right treatment at the right time and this decision takes us closer than ever to that goal.
“Right now however, there isn’t enough evidence to show ocrelizumab can work for everyone, and we know the restrictions will be a massive blow for those who still don’t have any options. We’re driving research to find more and better treatments, and calling for drug trials to more fully address the needs of everyone with MS, until the day we’re able to stop it in its tracks.”
Great news for the MS community
Karine Mather was diagnosed with primary progressive MS 6 years ago.
She reflected on what this decision will mean for people in a similar situation in the future.
Karine said: “This is great news for the MS community as people diagnosed with early primary progressive MS in Scotland will now be able to access a treatment for the first time.
“Primary progressive MS has had a massive impact on my life and on the lives of my wife and family.
“This medication will slow the progression of MS offering people newly diagnosed a treatment, enabling them to continue working and living a full life."