On Friday 28^th April the MND Association announced something very important for our community – preparation for the potential arrival of effective treatments with regulators, scientists, government and, of course, patients. Patients are working with the MND Association to ensure the fastest possible access to promising treatments, if and when they arrive. This is vital work and very timely.

One of these potential treatments is Interleukin 2 (IL-2) that has showed promising early results in the Mirocals trial.

Since December 2022, we have been engaging with the MND Association, the My Name’5 Doddie Foundation, MND Scotland, scientists and pharmaceutical industry experts, urging them to prepare the ground to ensure the fastest possible pathway for MND patients to get access to Interleukin 2, if, as we expect and hope, a positive scientific consensus emerges as to its effectiveness for a significant percentage of the patient population. 

As we are not neuroscientists ourselves, we leave it to the community to study the publicly available information with the MNDA Mirocals press release – 2022 and the highly awaited scientific paper on the Mirocals/Interleukin 2 trial when it is published, hopefully very soon. 

We should also say it is still possible that the consensus we expect will not emerge, but we believe it is better to be prepared for a positive outcome, as time does not wait for people living with MND.

As a result of our discussions, the MND Association brought together a “taskforce” to solely focus on identifying available routes to gain access to IL-2 while waiting for the regulatory processes. This would most likely be by a ‘compassionate access program’ of some description, in parallel with formal regulatory application which would progress via standard processes. Members of the task force include charity representatives, scientists, specialists with detailed knowledge of drug approval processes and, of course, patients. 

We will post more details on the potential pathways, potential barriers to access and, if necessary, our plans to overcome them in the near future. 

Rest assured, we will not be holding back. How can we when 2 of our number are parents with young children? And sadly a third member of our group, Chris Johnson, with two teenage children passed away last week.

In parallel with the work of the taskforce, we are putting together a plan to coordinate the patient voice to hasten delivery of the drug if things do not move as quickly as we would like.

In order to make this plan as effective as possible, we still need further insight on any reasons for any potential delays at the same time as establishing the pathways most likely to get the treatments into patients as quickly as possible.

In the meantime, you may ask, “what can I do to help?” 

1 – Keep tuned into our updates. We are working as fast as we can to push as many relevant buttons as possible through the connections we have made during the United to End MND campaign. These include scientists, charity executives, politicians, Ministers, high profile patients and media contacts. We will use as many of these elements in our co-ordinated plan as necessary, if progress is not fast enough.

2 – Please sound out your neurologist and/or other appropriate healthcare professionals about their knowledge of Mirocals & Interleukin 2.

Please point them to relevant articles and ask them if they would prescribe this existing drug for you and ask what ‘potential’ challenges they may face in prescribing Interleukin 2 for you.

The more awareness we can raise through asking such questions, the better.