Mirocals – a year of patient-led advocacy, but still no results

With the 2024 summer holiday season upon us, we have just passed the first anniversary of our small patient advocacy group, united2endmnd, making the extremely difficult decision to raise publicly, the concerning situation with the extensive delay in publication of the publically funded Mirocals trial results. 

We did not do this lightly, as we knew it would create a tricky situation, not only between ourselves and the MND Association, but also with the eminent UK neuroscientists who we also campaigned successfully with for a £50m government investment in targeted MND research that resulted in the formation of the UK MND Research Institute.

It had to be done. With constant requests for action and clarity appearing to be ‘falling on deaf ears’, somebody had to stand up for the many families in the community we are in regular contact with.

And, indeed, it has proven to be difficult. Nevertheless, we remain supportive of our primary UK charity in many ways and at the same time, with respect to both MND Association and the leading scientists, we continue to work successfully together on progress at the UK MND Research Institute.

We felt we had no choice given the plight of our community and, sadly, discussions that had begun way back in December 2022, with the publication of the preliminary Mirocals results, and our community had seen no progress. 

Over a year later, we believe our decision was fully justified. Sadly, our prediction that the results would not be released in 2023 came to fruition and the wait continues now late in 2024.

You can read a summary of the history here and an up-to-date précis.

We continue to make it clear, and have done since the publication of the interim results, that we accept the results may still be negative. 

The aims when we first outlined the community’s concerns included:

1. Highlighting the delay in publication of the results of a trial funded entirely by the taxpayer and charity donors. We believe the community deserves the most expedient outcome. If it’s failed, tell us.
2. Preparing the community, but more importantly health professionals, and organisations representing us, including MND Association, to be ‘ready’ for the potential positive results, given the early preliminary outcome.
3. Starting a public discussion of the factors outside of science that will have major implications for access to future effective treatments. For Mirocals, this has centred on the fact it was an academic trial (ie without pharma sponsorship) of an existing drug. Mirocals will not be the last trial to test existing drugs and factors such as commercial considerations will inevitably continue to crop up. Let’s work together and develop best practice together.
4. Galvanising the UK MND Community to raise awareness and informing with vital information regarding the potential of Interleukin 2. 
5. Influencing the release of the results ASAP.

Quite clearly, marking our own scorecard, we have failed dramatically so far on point 5!! We accept that.

However, we believe we have succeeded on the first 4 points, with the vital help of our high-profile patients, including the late Rob Burrow and family, Stephen Darby and Doddie Weir’s Foundation. Together we have kept the situation in the community’s consciousness so that when, and if, the results are released and, as we all hope are positive, the momentum and impetus is in place to speed access.

Importantly we have NOT campaigned and are NOT campaigning, yet, for access to what is currently an ‘unproven’ drug. This is an important distinction. However, we completely emphasise with (without endorsing) those who have bought Interleukin 2 privately.

We believe that MND Association, senior researchers and Consortium members should be standing up for us in a far more assertive way to help achieve our aims. 

Sadly, “commercial confidentiality” has denied us the transparency needed for a publicly funded research project and, some believe, commercial considerations might explain the delay in the results? We simply cannot know the reasons without such clarity.

As we continue to wait, and we have no idea if the results are imminent or not,  there is still an opportunity for those organisations and individuals to stand up and be counted. 

Best wishes to our global community.

United2endmnd