Isita’s treatment is going well. She is most likely going to be discharged tomorrow (Friday) evening. But out of the blue our worry has switched from how to get her out of hospital to how to get her back in again. She and a handful of other children with high risk neuroblastoma who are at approximately the same stage have landed in the middle of an extraordinary and probably unprecedented muddle. The NHS may have to suspend the immunotherapy which they have been getting for the past couple of months.

It is, of course, usual for the NHS to provide some drugs and not others on grounds of cost-effectiveness. It is very unusual, however, for it to have to stop providing a life-saving treatment in the middle of its administration on financial grounds. The senior consultant oncologists who have just informed us of this development said they believed it has never happened before in paediatric medicine at least.

This afternoon, the doctors gathered together the parents of all the affected children in a seminar room on the ward. We all know or recognise each other as several children are on the ward at the moment, and others have been here in the past few months. Ours are the first to get to the immunotherapy stage since a clinical trial under which everyone received the treatment ended last year. Isita was enrolled on that trial, but the problems she encountered after high-dose chemotherapy meant she dropped off it.

The news which the doctors had for us was that EUSA Pharma, the company which manufactures the Dinutuximab Beta anti-GD2 antibody can no longer provide it for free. As the decision whether or not to provide it on the NHS is still pending, no further supplies of the drug are available. Those who are getting it right now (like Isita) can finish their current cycle. But we don’t know if the next cycle  will be provided, or if eventually we will have to pay for it ourselves one way or another.

EUSA Pharma has been very generous. At its own risk and cost it has covered the provision of Dinutuximab following the end of the clinical trial. If it had not done this, no drug would have been available to any child in this cohort at all. This has been a substantial undertaking. So if EUSA cannot afford it any more, we cannot blame it. The worst thing for us and the 50 or so children who are diagnosed with high-risk neuroblastoma every year would be for this company to go bust. No one else makes the drug.

The results of last year’s clinical trial were presented to the National Institute of Clinical Excellence (NICE) last week. This is the body which decides what the NHS will pay for and what it won’t. The doctors have said the numbers should support the provision of Dinutuximab on the NHS as standard of care. It is standard in the United States. Elsewhere in Europe individual requests for government funding for the drug are routinely approved.  It would be a shame if this standard were not available to children in the UK.

We know that NICE does not appreciate external pressure on its decisions and that it has to weigh up a lot of different priorities. We are not attacking it. The problem right now is the sudden introduction of great uncertainty at a crucial moment of treatment. The institute could take six weeks to decide, while Isita is next due the drug in three weeks.

The best result would be a speedy approval. Next best would be an approval causing a delay of only a few weeks. Third best – for us at least – would a compromise which allowed those children who have started the antibody treatment to go all the way through to the end even if no new treatments are funded. And worst of all would be no funding at all.

We hope and pray that they make the right decision for us and for everyone involved. In the meantime, we are heading home for some serious baking.