In the last few days I have become increasingly anxious about the regulators, payers and healthcare professional letting down pwPPMS. Despite having the first positive trial of a DMT in PPMS there are many hurdles to overcome to get ocrelizumab to the people who need it, i.e. people with active PPMS.
It seems as if the wider community are fixated with the impact of ocrelizumab on lower limb function, i.e. compared to placebo it reduced EDSS progression and worsening of the Timed-25-Foot by ~25%. However, the elephant in the room is its impact on hand and arm function. In the ORATORIO study ocrelizumab reduced worsening of the 9-hole peg test by 45%, almost double the impact on lower limb function. These findings are entirely compatible with our length-dependent axonopathy hypothesis. In other words systems with shorter axons and more reserve will respond better to anti-inflammatory DMTs and in a shorter period of time. The upper limb findings of ocrelizumab are so important that I have asked Roche to seriously consider doing a trial in more advanced MS, including people in wheelchairs, to see if ocrelizumab can address this massive unmet need. Other surveys done as part of our #ThinkHand campaign have highlighted the importance of hand function for pwMS. When people lose the ability to walk their arms and hands become their legs and upper limb function keeps them independent.
The consequences for pwPPMS being denied access to the first licensed therapy cannot be underestimated. So if you care about this issue, and if you care about protecting upper limb function in pwPPMS, can you please complete the survey below. Thank you.