More than 2.3 million people worldwide currently live with MS. Of these, more than one million people live with a progressive form of MS.

Progressive MS is a type of MS that gets worse over time, affecting areas such as vision, mobility, cognition, ability to work, and independence.

Despite advances in other forms of MS,  the discoveries that will lead to treatment for progressive MS have remained stubbornly elusive.

First treatment licensed for primary progressive MS in the US and Europe

In April 2017, ocrelizumab was approved as a treatment for both relapsing and primary progressive MS in the US. It is the first licensed treatment for people with primary progressive MS. The decision was made by the US Food and Drug Administration (FDA). In its latest trial results, researchers found that ocrelizumab reduced relapses, MRI activity and slowed progression in relapsing MS. It was also found to slow progression in primary progressive MS.

In January 2018, The European Medicines Agency (EMA) approved ocrelizumab (Ocrevus) for early primary progressive MS (PPMS), as well as for the treatment of adult patients with relapsing multiple sclerosis (RMS).

Decisions about price and reimbursement will take place at the level of each member state in the context of the national health system of that country.

Will everyone who has primary progressive MS benefit from ocrelizumab?

As with all clinical trials, the ocrelizumab trial in primary progressive MS limited the characteristics of people who could participate. The trial only included people who were aged 18 to 55, who had an EDSS (Expanded Disability Status Scale – a scale to assess neurological functioning used in clinical trials) score of up to 6.5 (meaning they were able to walk with the help of a walker or bilateral crutches or other devices on both sides), and who had evidence of immune proteins in a test of their spinal fluid (“oligoclonal bands”). It is not possible to predict how a specific individual will respond to treatment. The use of ocrelizumab in clinical practice will help determine who is likely to benefit.

The Progressive MS Alliance

The International Progressive MS Alliance is an unprecedented global collaboration of MS organizations, researchers, clinicians, pharmaceutical companies, and people with progressive MS, transforming the landscape of multiple sclerosis.

The Alliance was established in 2012, by six founding members: MSIF, and the MS societies of Canada, Italy, the Netherlands, the UK and the USA, who made a joint commitment to speed up the development of treatment for progressive MS by removing scientific and technology barriers.

The Alliance now has 17 member organisations who, between them, have many years’ experience of MS research and have funded significant developments in research, disease-modifying therapies and symptom treatments.

Progress to date

  • In 2014 the Alliance awarded their first Challenge Awards to encourage scientific innovation, and Infrastructure Awards to promote data sharing and knowledge management. A total of 21 projects, with researchers based in nine countries, were awarded funding of over €1.5 million. The projects focused on clinical trials and outcome measures, biomarkers (measureable indicators) of progression, gene studies, rehabilitation trials, new disease models, and research to better understand the pathology of progression.
  • In 2015 the Alliance selected 11 ‘networks’ (collaborations of at least three research institutions, many of which were multi-disciplinary, from around the world) to receive a Collaborative Network Planning Award of €50,000 for 12 months. These groups and institutions have not worked together in this way before, so the planning awards give the groups of researchers and institutions the time and resources to establish and demonstrate how they will make it work.
  • In September 2016 the Alliance announced the successful three networks to receive a four year Collaborative Network Award of €4.2m. As with all of our awards these grants were decided by an international group of renowned researchers and agreed by the Scientific Steering Committee.
  • Read about the progress made by the three Collaborative Network Awards in the Alliance’s 2017 Progress Report.

MSIF hosted a webinar on progressive MS with Professor Alan Thompson and Professor Olga Ciccarelli from the Institute of Neurology in London to answer questions from people affected by MS from across the world. Among the topics covered in this hour-long webinar are:

  • The best available treatments for progressive MS
  • The role of rehabilitation and exercise
  • Similarities between MS and Alzheimer’s
  • The effect of different diets on progressive MS

Watch the webinar below or read the transcript.