Taskforce launched with focus on emerging treatments

To ensure new and effective treatments are available as soon as possible, we have set up a taskforce of experts, focused on identifying routes for patients to access emerging medicines.

The first drug to come under the Taskforce’s remit is low-dose interleukin-2 (IL-2), a repurposed cancer drug which is showing some encouraging results in early clinical studies.

The MND Access to Treatments Taskforce founded by the MND Association, had its first meeting in April. The group comprises people living with MND, representatives from the MND Association, MND Scotland and My Name’5 Doddie Foundation, as well as neuroscientists and specialists with detailed knowledge of drug regulation. It can take many years for new medicines to go through the research and licensing process, and involve multiple groups, from researchers to pharmaceutical companies, regulators and pharmacists. Even after getting a licence, drugs have to be approved for use by other bodies such as the National Institute for Health and Care Excellence (NICE) in England and the Scottish Medicines Consortium (SMC) in Scotland. Only then can doctors prescribe them on the NHS.

It is the Taskforce’s role to investigate and identify the most effective routes through these processes.

The Association’s Chief Executive, Tanya Curry said: “People with MND desperately need some hope. Right now, researchers are talking about being on the cusp of really meaningful breakthroughs and we need to be ready to act as those happen. The creation of the Taskforce is enabling us to pool knowledge, expertise and resources to do everything possible to accelerate access to effective treatments as and when they become available.”

MIROCALS: next steps

Currently, only patients from one research site which took part in the Modifying Immune Response and Outcomes in ALS (MIROCALS) trial in the UK, are being offered access to IL-2 via a compassionate use programme.

ILTOO, the French pharmaceutical company which bought the commercial rights to the MIROCALS data, hasn’t yet announced whether it plans to provide an early access programme. If it does, this could mean people who were not on the trial may be able to access the drug. The Taskforce is in discussions with ILTOO about this. We will be sharing the www.mndassociation.org/taskforce