#United2endMND Let’s ‘crack on’ to treatments in 2024
This has been a very busy year in the MND research arena. As further progress is made, and there is much more work to be done, the conversation in the neurologists’ consulting room is also starting to change.
The UK MND Research Institute was officially launched, 3 years after the start of the patient initiated United to End MND campaign brought the fight for greater research funding to the UK government. A number of projects are already underway including the groundbreaking EXPERTS-ALS drug screening project which will start to reach patients in 2024.
Huge awareness continues to be raised by high profile patients and their friends, including, of course, Kevin Sinfield with his superhuman efforts for his friend, Rob Burrow, and all of those living with MND.
November saw the 1st anniversary of Doddie Weir’s death. It seems like yesterday, but it sadly reminds us that about 2000 people have died since Doddie’s tragic passing. More than ever it tells us that we must “just crack on”.
And that is precisely what Patients United To End MND will do as we enter 2024.
The disappointment of 2023 has been the ongoing wait for the much anticipated Mirocals trial results for the Proleukin (low dose interleukin 2) repurposed drug treatment candidate. It is now just over a year since the promising top line (provisional) results were published indicating the real potential for a significant reduction in death during the trial over 21 months for patients taking the treatment.
Throughout the year #United2EndMND has encouraged the charities and research community to act with urgency and to be prepared as it does look enticingly like the next effective treatment for our disease which might benefit up to 80% of the disease population. We will continue to update our Mirocals status page on a weekly basis.
Our efforts have not only included lobbying the charities and researchers, they have also focused on the practical. For example, we have spoken with potential suppliers of Proleukin, pushed forward the NHS Specials and NHS Medicines Repurposing routes and provided considerable input into information packs for health professionals which will be available on publication of the results, if positive.
Sadly we still await the results and unfortunately more patients have died and been diagnosed without having a chance to yet try this treatment.
We now believe the results must be close and, having had over a year to make preparations, we sincerely hope that all of our charities (vitally including the MND Association with its network of care centres), our researchers and consultants are working busily to facilitate access to either of two low dose Interleukin 2 drugs, the readily available Proleukin or the new prospective ILTOO product, ILT-101, within weeks of a positive announcement emerging.
In that event, it is highly likely that Proleukin will be the only therapy available in the short term. #PatientsUnited2EndMND and the charities have been pushing ILTOO for clarification on the roll out of ILT-101 and its Managed Access Programme since September 2023. With no further details being offered, this is the only conclusion we can come to.
We understand the charities will be announcing their plans to prepare for a positive outcome, using many of the recommendations we have made over the past few months, in January.
In the meantime a Merry Christmas and Happy New Year from #PatientsUnited2EndMND
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