Tofersen update - travel support fund

We recently shared an update on work we have been doing to improve access to the drug tofersen across the UK, for people living with SOD1 motor neuron disease (MND).

Tofersen, the first truly effective life-extending treatment for people living with SOD1-MND, is licensed in the UK but still needs to be approved for NHS use by the National Institute of Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC). While this process goes on, the manufacturer, Biogen, is making the drug free of charge to eligible patients on a ‘named patient basis’. This means NHS Trusts and Health Boards can choose to make the treatment available and currently, only some have done so. This postcode lottery is preventing some eligible patients accessing the treatment. This is a particular issue in Scotland, where no Health Boards are currently offering it at all.

In March, the MND Association introduced a new support fund to help people in England, Wales and Northern Ireland who are having to travel out of their area to receive tofersen, and today we can confirm we are partnering with them to support those patients living in Scotland in the same way. The new targeted fund will cover the cost of travelling to and from appointments, including overnight accommodation if needed, specifically to help Scottish patients access tofersen.

If you or a family member is living with SOD1-MND and cannot currently access tofersen, please get in touch at research@myname5doddie.co.uk

We believe research has the capacity to change the reality of an MND diagnosis. But the whole system has to work together to make this possible.