Update: Access to emerging treatments for motor neuron disease (MND)

My Name’5 Doddie Foundation understands the frustrations expressed by people living with motor neuron disease over the ongoing delay in obtaining sight of the data from the completed MIROCALS trial, involving lower dose Proleukin (interleukin-2, IL-2). The positive top line data was announced in December 2022 by the MIROCALS Consortium, but we are unable to move forward and gain patient access to IL-2 until the detailed analysis is published or at least presented to the clinical community.

An 8-month delay is not acceptable for patients, who do not have the luxury of time.

The MIROCALS trial was funded largely by EU / UK taxpayers and charitable donations (including from My Name’5 Doddie Foundation), so we are calling on the leaders of the Consortium to release the data, under embargo if necessary, so research experts can assess if the details are as encouraging as the top line data initially indicated.

Proleukin is already available – it is licensed for renal cell carcinoma – albeit at a higher dose than what was used in the trial. If the data is as encouraging as the top line announcement suggested, this information would be the first step in securing authority to reconstitute the higher dose into the lower dose used in the trial and made available to people living with MND as soon as possible, on a ‘named patient’ basis. Waiting for a formal licence will take years and this is why we have processes that enable vital treatments to be given to patients in exceptional or ‘special’ cases.

Time is of the essence for people living with MND – it is a brutal disease and we will do everything we can to expedite this process.