IFR funding request?

[Ian C]

There seems a couple of drugs out there showing promise for MND, think Proluekin and AMX0035 primarily.

Niether approved by NICE an available on the NHS

Just wondering if anyone had ever tried applying for IFR funding?
NHS commissioning » Key documents (england.nhs.uk)

Looks like a route for applying for non-approved treatment.

Any experience of this?

[Ellie]

Proluekin and AMX0035 ... Niether approved by NICE an available on the NHS

Proleukin is an approved drug in the UK for certain cancers, not for ALS.

Amylyx has not submitted an application for approval in the UK, so obviously has no approval.

Whatever hope you have of getting Proleukin prescribed 'off label', I wouldn't bet 1p on you getting funding for AMX0035 for multiple reasons, but that's only my very uninformed opinion.

Something to discuss when you next meet your Neuro, for sure.

Are you eligible for any clinical trials? xx

[Ian C]

Yeah, i fear it will be a massive uphill struggle but i'm going to ask the question and keep asking

I've got till January before my 2 year onset kicks in and I wouldn't be eligible for most if not all trials

I was due to start the Courage trial last month but the blood test highlighted something and only get 1 shot at it.