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Important update: DFMO (Iwilfin / eflornithine) – UK Access

Last updated: 28th May 2026. New information is shown in italics.

We want to share an update about DFMO (also known as Iwilfin or eflornithine) as the way in which DFMO is being made available in the UK has changed.

DFMO is not licensed in the UK and is not part of routine NHS treatment for high-risk neuroblastoma. This means it has only been available through specific access mechanisms
rather than standard NHS routes.

Until recently, eligible children in the UK (and across Europe) were able to access DFMO through an Expanded Access Programme (EAP). We were informed that this programme has now closed. Any new requests must instead be made via a Named Patient Programme (NPP), coordinated through an international pharmacy service (Tanner Pharma), and will be assessed on a patient-by-patient basis.

What does this mean for children already on the EAP? 

Patients who have already been accepted onto the EAP can continue treatment free of charge until they complete the programme.

What does this mean for children not on the EAP?

For patients not already on the EAP:

  • access to DFMO must be requested by the child’s consultant via the Named Patient Programme;
  • the medicine will be chargeable and not provided free of charge.

For families who wish to explore access to DFMO, this would need to be led by your child’s consultant. You may wish to ask your clinical team to:

  • consider whether they would be willing to request DFMO via the Named Patient Programme operated by Tanner Pharma;
  • review the guidance for clinicians provided by Solving Kids’ Cancer UK via CCLG;
  • explore with their NHS Trust whether it may be possible to provide DFMO alongside NHS care on a self-funded (“top-up”) basis.
  • Review the statement published by SIOPEN (the European Neuroblastoma Research Group)
  • Any such decision would depend on your child’s individual circumstances and on whether the NHS Trust is able to support this pathway.

We know this creates uncertainty and concern for many families.

Update on NHS guidance about self-funded access (“top-up” care)

We have now received further information from NHS England about how access to medicines like DFMO may be considered where they are not routinely funded.

In England (and, based on current understanding, Wales), it may be possible in some circumstances for a child to receive DFMO alongside their NHS care on a self-funded (“top-up”) basis, if the NHS Trust agrees to support this.

This is not automatic. Decisions are made locally by individual hospitals. 

NHS England guidance also makes clear that families may be asked to cover:

  •  the cost of the medicine itself; and
  • additional costs incurred by the Trust in delivering that care (for example pharmacy handling, monitoring, or administration)

The exact costs and arrangements will vary and must be confirmed by the Trust in advance. 

Further clarity on UK pricing for DFMO is expected shortly. We will share this information with families as soon as it becomes available.

You can find the NHS England guidance here: NHS Guidance

Important differences across the UK

The position described above applies to England and, based on current understanding, may also apply in Wales.

Scotland does not allow patients to pay for additional private (“top-up”) treatment alongside NHS care for medicines that are not approved for routine use.

We are still awaiting confirmation of the position in Northern Ireland and will update families as soon as we receive further information. 

Families residing in Scotland and Northern Ireland should seek further information from their Clinician directly if they wish to access DFMO in their nations; we have advised Clinicians in these nations to consult their respective health authorities for further guidance.

What are we doing now?

We are continuing to work closely with the UK clinical community and the companies involved to understand what options may be available and to ensure families receive clear,
accurate information. 

This includes engaging with NHS England, the relevant pharmaceutical companies and the wider clinical community to clarify whether and how self-funded access may be possible within NHS care, and to ensure clinicians have clear guidance to support conversations with families.

Where to turn for questions and support

If DFMO has been discussed as part of your child’s treatment, your consultant is the best person to discuss what this may mean for your child.

If you are considering this option, it is important to speak to your child’s clinical team, as only they can assess whether it is appropriate and whether access may be possible in your NHS Trust. 

We also recognise how difficult and uncertain this situation is. Our Family Support Team is here to support you. You can contact the team by telephone on 0207 284 0800 or email: support@solvingkidscancer.org.uk.

Our commitment to families

We remain committed to sharing updates as soon as we receive new information, and to advocating for equitable access for all children. 

We recognise that this is a complex and evolving situation, and we will continue to keep families informed as further clarity becomes available.