”Proleukin will give me more time to be her Mother. More time to guide, nurture and love her. Without Proleukin I will die sooner than I need to. The delay in getting this drug to patients is unacceptable and we will not tolerate inaction. People with MND deserve and demand treatment”

Emma Moss – Patients United2EndMND

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An open letter to the Mirocals Consortium, MND Association (as members of the consortium), and leading UK neuroscientists involved in the trial on rapid access for patients to Proleukin

To all concerned.

In December 2022, initial high level results were presented from the Mirocals trial. Amongst other findings were that in up to 80% of the trial participants, there was a significant decrease in the risk of death of over 40% in the 21 months of the trial (indicating a slowing of the disease rather than cure). Understandably, people living with MND – a disease that typically kills within 2 years – were excited.

We are truly grateful to the scientists involved in the outstanding work which has led to this discovery and to the charities which have invested significant funds. 

However, 7 months later, we are still waiting and there is no sign of further progress. We as United2EndMND cannot see the paper/trial results being published before the end of 2023. Given that Mirocals was a trial partly funded by charitable donations, raised through activities run by desperate families or collections made at funerals, we are asking scientists and charities to step up to the plate and show real leadership by taking every possible measure to accelerate access to Proleukin. 

On behalf of people suffering from this dreadful disease, we demand: 

– Sufficient data from the trial to be made available NOW (mid August at the latest) to allow doctors to prescribe Proleukin, either as a pre-print of the academic paper or wider sharing of the regulatory package. 

– Urgent work NOW by the MND Association (as members of the consortium) with neurologists across the UK to support them in seeking to prescribe on a named patient basis as an NHS Special.

– Urgent work NOW by the MND Association (as members of the consortium) with NHS Medicine Repurposing so they can consider the evidence and issue UK-wide guidance quickly supporting prescription, as they did for Covid-19. 

People living with MND do not have time to wait and deserve much better. We expect MND charities, working on our behalf, to prioritise this work and proactively engage. 

Further delay is unacceptable.  

Patients United To End MND.

To MND patients, their families and carers

We understand how strongly you feel. Please feel free to share the open letter on social media or send directly to any scientists, neurologists, charities and foundations that you are connected with and reflect your own feelings.

If the delay continues we will propose further actions to the wider community by mid-August. 

Our email is always open if people would like to contact us – patientsunited2endmnd@gmail.com