Proleukin – Medicines Repurposing pathway update

One important potential route to patients getting access to Proleukin is the NHS Medicines Repurposing scheme (MR).

If successful, this would mean the NHS publishing guidance supporting prescription off license. We would want to see cross UK guidance. The MND Association are putting together an application and have invited us to submit a patient statement. Please note that this is in parallel to the NHS Specials pathway which may be quicker for some. MR will provide a more robust solution for the whole UK.

We invited patients on social media to share their experience and thoughts with us. Thank you so much to everyone who did. It was really emotional to read those messages and it reminds us why we need to keep fighting for us to have the chance to try this treatment.

Patients continue to tell us how frustrating it is to have no treatment options but to only have their decline managed. Our lives matter – to us, our partners, family, children and friends. As one patient put it – “I have so much to live for”.

Here is our statement:

Patient statement – medicine repurposing for Proleukin

A diagnosis of Motor Neuron Disease (MND) is a death sentence. Those of us living with the disease will lose the ability to walk, use our arms and hands, speak, eat and ultimately breathe. 1/3 of us die within a year of diagnosis, and typically survival is no longer than 2 or 3 years post diagnosis. It is the most common neurodegenerative disease of middle age. There are currently no effective treatments.

Interleukin-2/ offers unprecedented hope to MND patients following the release of high level results in December 2022, which showed that it reduced the risk of death by 40% (likely to mean a significant slowing of progression rather than a cure). This follows two earlier Phase 2 trials that showed it is safe and effective.  However, the right to market Interleukin-2 for MND/ALS has been sold to a French biotech company, Iltoo.  Iltoo is unlikely to be able to offer a treatment to patients for some years. This means that most of the patients alive now or soon to be diagnosed will have died without ever trying this treatment. Yet, the product used in the trial is used by the NHS now and has been proven safe, effective and cost effective – we want the chance to try this treatment.

Current standard of care

Currently, the NHS is able to offer very little to those living with the disease. The only medication is Riluzole, which offers only a few extra months of life. Many patients report attending NHS clinics only for their decline to be recorded and with the neurology team, however caring they may be, unable to offer any interventions to slow their decline. As one patient has put it “from the start I don’t think there was any hope given – we’re told to go away, think about it and they would see us again in 3 months time”. Another commented “I was invited to clinic every 3 months and it was just a box ticking exercise”. 

Comparisons are often made with having cancer, where consultants can at least offer an attempt at treatment which may cure or slow the disease – no such treatment is available to those with MND. All we can hope for is to have our symptoms alleviated and for palliative care to make our decline easier. This lack of treatment can be psychologically traumatic and adds to the burden of living with the disease for us and our friends and families.

Benefits of Proleukin

The prospect of a treatment that will slow progression of the disease and allow us to retain physical function offers a multitude of benefits compared to current treatment, including:

– Spending longer with our families, and those of us with children can continue to be there for them as parents and see important milestones. 

– Allowing us to continue working, making a contribution to society and having a significant positive impact on our mental health.

– Being able to manage for longer without additional care which reduces the financial burden on our families but also society more widely.

– Keeping more physical function for longer means we can be left on our own which enables our partners to keep working, which is important for their mental health and also reduces financial stress.

– Continuing doing the things we love and which make life meaningful, like holidays with family and friends, watching our children playing, going to social events.

– Making it more likely for us to be around to benefit from further emerging treatments, which are very much on the horizon.

– Relying less on multi disciplinary teams, less likely to be admitted to hospital, and delaying an application for CHC (NHS continuing healthcare) funding for longer – saving costs for the NHS.

For many people alive now with MND, we are contemplating our last birthday or last Christmas – unless there is an intervention.  Proleukin offers us the chance of seeing our children start school, start senior school, get their GCSEs and perhaps more. These are milestones we will miss if we are left to decline.

We have so much to live for. Not just us as individuals but our family and friends who want to look forward to a future together with us.  Please allow us more time to make more memories.  Please give us the option of treatment with Proleukin.