Statement regarding letter to ILTOO Pharma

Since our update last week, and with the support of our legal advisors, we have written a formal letter to ILTOO Pharma, the pharmaceutical company engaged by the MIROCALS Consortium in a commercial agreement.

We have asked for assurances from the company about how, in the event of positive results, it will prioritise supporting people with MND in the UK to gain access to any proven drug as quickly as possible. We have also echoed again our deep frustration with their lack of communication with us, other MND charities and the MND community.  

We have already written to them twice before along with other UK MND charities, and will update you if and when we receive a response.

Meanwhile, we have been asked if, as a member of the Consortium, we voted for ILTOO Pharma to be the commercial partner. Yes, we did. As we said in our published statement in September 2023, the decision to appoint ILTOO Pharma was based on a vote by Consortium members in the General Assembly. The vote took place in January 2021. Our key consideration, in representing the MND community, was which proposal we thought had the best chance of getting any potential treatment to people with MND, as quickly as possible, should the results prove positive. Our vote was made based on the information available at the time in the confidential tender documents.

We weren’t involved in the confidential discussions or negotiations with ILTOO Pharma that followed, and our role in the Consortium means we haven’t been involved in, and nor are we privy to the terms of the commercial agreement signed with ILTOO Pharma. While we appreciate this is frustrating to some, because of this, we are not in a position to be able to answer any questions about the commercial arrangements that were subsequently put in place as we simply do not have the answers.  

Equally, due to the confidentiality obligations contained in the legal contracts that are in place with other Consortium members, we can’t share any detail about which companies entered into the confidential tender process, information about their bids or how other Consortium members voted.

What we can say is that, as we promised last week, our focus continues to be on getting the results from the MIROCALS trial published as quickly as possible. We know that when the results are released in the journal paper, it will be in an open access paper (which means that it will be freely available to all to read straightaway).  We have also joined with others in urging for a pre-print publication of the trial results (where data is published before it has been peer reviewed) and, along with other charities, we have been talking to the NHS to explore ways of getting access to the treatment as quickly as possible, should the results be positive. These conversations are ongoing.