”People and families have waited far too long for the hope of a treatment for MND. We demand the release of the Mirocals paper immediately and access to Proleukin.”

Stephen Darby – Patients United2EndMND

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Proleukin (Interleukin 2) Update

Being part of the MND community, readers will no doubt be aware of the recent social media reaction caused by our statement regarding the potential access to Proleukin (IL2) some 3 weeks ago.

We, as patients-United2EndMND, were very sad indeed that we were given no choice in choosing this route to highlight some of the very serious concerns we have been having, quite frankly, for many many months now.

The reaction, as you would have seen, has been continual ever since and, not unsurprisingly, very emotional in parts on Facebook and X (Twitter).

Today we just wanted to provide 3 short, but vital, updates

1. A brief comment on the MND Association’s most recent update.
2. What our 100% focus is right now.
3. A rough outline of what we plan to do in both the immediate future and the coming months.

Taking each in turn:

The update from the MND Association was confusing for our community in that it both showed the MND Association supporting our cause but also had a very down beat tone reporting on the unsuccessful informal meeting with the medicines repurposing team within NHS England (please note we would push for any guidance to cover the whole of the UK)

The update simply stated that the group had indicated that Proleukin was not within the criteria for repurposing. To their credit the MND Association have expressed extreme disappointment and are challenging for which we thank them.

We completely support the MND Association’s stance on this and argue that is the only approach that will ensure there is no postcode lottery for patients. MND has an enormous unmet need – if the scheme was not designed for this, what is it there for? Finally, having a simple “NO” is a red rag to a bull! So watch this space everyone!

However, drug repurposing is one of 2 possible routes to access (once and if positive news is received with the data/pre-print paper). The second is off-label prescription (known as an NHS Special of a new dose) which would be our fallback approach. This would require neurologists seeking approval to prescribe from their hospital trusts, which might be the quickest route even though we ultimately want to ensure blanket coverage. 

On to point 2, what is our 100% focus right now?

Unless we get the data/preprint of the peer review paper from the MIROCALS consortium we cannot move forward, under any circumstances. So this is our 100% focus (well 90% in reality because we will be preparing for its arrival – see below).

Finally, what are our plans to both achieve this and the other essential steps along the way to potential access? We have created a new rolling Interleukin 2 update page titled

Interleukin 2 – Action Plans

Given the complex situation with many moving parts, this is necessarily detailed, but please do have a read and bookmark the page. We will update you on a regular basis.

Thank you for listening and best wishes everyone.

Patients UNITED2endMND