Mirocals results – the wait goes on…
The June 24 MND Association update on Mirocals was welcome, because of the increasing urgency shown by our charity. It also served to confirm the My Name’5 Doddie Foundation’s hint in its June 6 statement that the ILTOO Managed Access Programme (MAP) might reach more patients than previously expected and that there may be ongoing talks with regulators. However, it was disappointing in 2 respects.
First, it completely disregards the existence of the actual trial drug, low-dose Proleukin, sitting in NHS pharmacies now. Once again, we have to ask why. Has Proleukin been ditched completely? Are there good reasons? I.e. Is the new “bio similar” produced by the Consortium’s commercial partner, ILTOO, likely to be available faster than the trial drug?
Second, it does not reflect the reality that those living with MND are experiencing with their consultants. We have not heard of any who would consider prescribing ILT-101 even if available free of charge under the MAP BEFORE confirmation of positive trial results. So the MAP appears more theoretical than a reality?
All we ask is for the transparency which should be due for a trial publicly funded by taxpayers and charity donors, including many of the readers of this website.
United2endMND wrote to the CEO of the MND Association last week expanding on these points and her response is indicating that they ‘appear’ to be ‘hiding behind’ commercial confidentiality and not willing to discuss the 2 critical points above. Needless to say, this is disappointing and we will continue to press during the summer downtime.
We continue to update our Mirocals status page.
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