Support Mirocals Transparency Request

Do you want your voice to be heard by the Mirocals consortium?

Add your voice to our campaign for Mirocals Transparency

The MND community still awaits the results of the Mirocals (low dose interleukin 2) trial, 16 months after publication of the promising provisional findings. While we accept the results may still be negative, the delay is causing heart wrenching anxiety in families touched by this brutal disease.

We now urge you to join our high profile campaigners – Rob, Lindsay and Geoff Burrow, Stephen and Stephanie Darby, Marcus and Louise Stewart and Ed and Jo Slater – in asking key questions of the Mirocals Consortium by adding your name to their recent open letter.

Please use the simple form below. We will collate the names and publish them (first names only) on our website.

Let’s show the Consortium we need answers now. Enough is enough.

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Your support has been sent

Thank you for your support. We would really appreciate if you might consider sharing our request with your friends and colleagues on Twitter (X), Facebook, Instagram or email. If you could ask your friends to visit https://united2endmnd.org/support-mirocals-transparency-request/ Thank you.

First name

Surname

Email address

How has MND touched your life?

Location

What would access to Proleukin mean to you if Interleukin 2 was proven effective?

By submitting this form you agree to your first name being published on our website showing support for our community’s request to the Mirocals consortium for transparency. Thank you.

FAQs

For questions on the status of the Mirocals trial, please go to our dedicated page.

How will signing this help us access the drug faster?

We need clarity about why and how ILTOO were chosen and if they can deliver their new drug as quickly as low dose Proleukin. If this is not forthcoming, then we need to see arrangements for an alternative supplier and a contract that can get the drug to patients ASAP.

No member of the Consortium has ever explained the commercial arrangements in full. This is simply unacceptable for a trial funded by UK and EU taxpayers and charity donors.

Without the transparency and a clear plan for patients to access the drug, our current view is…

There is very likely to be a requirement for a new trial for the ILTOO product which could take years when the trial drug, Proleukin, already exists on NHS shelves.

Neurologists and doctors will not focus on the fastest routes to access compounded low-dose Proleukin. Nor will hospitals be sufficiently prepared for a positive result to the trial and getting it into patients’ bodies.

Why didn’t you take this approach before?

Over the past few years we have worked tirelessly with the leading UK neuroscientists and the MND charities. This led to considerable success with the promise of a £50 million investment from Government and the launch of the UK MND Research Institute. In our view, the fastest way to access the trial drug would have been to work closely with them. If a positive result is confirmed, the community will need to lobby government, health and regulatory bodies for funding and to speed patient access to it.

However, after the signing of the contract with ILTOO, it became apparent Consortium members were unable to answer questions because of “nondisclosure agreements”. This was unacceptable to us because it seems (without the requested transparency) to put the interests of ILTOO above those of patients.

We have continued to ask questions publicly on transparency since last September and have worked behind the scenes with our high profile colleagues. Sadly, we have had no success and are now asking the same questions united as a community.

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