CMPA and the Question of Over Diagnosis

Let’s not argue about whether CMPA is over-diagnosed. We need to be angry about poor industry ethics instead.

This week the BMJ released an article raising questions about industry involvement in CMPA diagnosis, questioning the huge rise in babies being prescribed specialist allergy formulas. As an allergy parent who fought for a diagnosis, and a breastfeeding volunteer I have followed the report in the BMJ with interest. Some people feel this article dismisses the struggles many go through to achieve an allergy diagnosis and have been very vocal about expressing this.

I can understand this. I too have mixed feelings about the report. Much of what it says is familiar to me. In the UK, our cultural attitudes toward babies often create issues. Normal behaviours such as wanting to breastfeed frequently and stay close to the mother sometimes end up being turned into some sort of pathology, be that reflux or allergies or tongue tie. In some cases, anxious parents don’t realise that WEIRD nations genuinely do have some weird ideas about how babies should behave.  I have also seen families in the UK move to formula, overwhelmed when CMPA is suggested because giving up milk seems a huge undertaking that no one is supporting them with. Worse, in some cases nobody is even questioning whether it was the right approach for that parent in the first place.

On the flipside as an allergy parent, it really does make me upset that this article release may mean it is now even harder for families to get a non-IgE diagnosis. Many non-IgE CMPA families are still struggling to have their children’s allergies identified or recognised. I experienced this first hand. I worry clinicians may read this article without understanding fully how to identify and diagnose non-IgE allergy; for example, the importance of taking an allergy-focused clinical history. My worry is we will see a swing back to other interventions for families, such as acid reflux medications, which may be more problematic. Especially if we keep failing here in the UK to support families properly.

The UK is often not good at supporting breastfeeding or indeed, parenting generally. We under-fund or cut breastfeeding support services, what’s more, we then don’t give families who are bottle feeding enough support either. We overstretch our wonderful health visitors and doctors so they can’t spend enough time with concerned parents. Our media promote ridiculous ideas about how our babies should sleep, feed and behave. Our government policies result in the shutting down of children’s centres and cuts to children’s services.

However, upset as I am about all of this (and I am) what really makes me furious with CMPA in particular is the industry meddling and sponsorship of research that has been allowed to proliferate. It is this which now threatens to undermine the diagnosis and awareness of non-IgE CMPA. I don’t know if CMPA is being overdiagnosed. I don’t think anyone can say with surety that it is. However, we can’t criticise the authors of the BMJ article for simply pointing out that bias is a problem here. The appearance of bias is a worry regardless of the extent. We can argue forever whether or not this researcher or that researcher was biased. In the end, it doesn’t matter if they can look like they are.

What makes me angry is that big formula sells both the problem and the solution and this is seen as acceptable.

What makes me mad is that big formula has been allowed anywhere near creating the guidelines for CMPA diagnosis. This opened the door to the criticism that has now emerged.

I am not mad at the scientific and medical community for raising a valid concern about bias.

Professionals and anyone speaking publicly about allergy, be that scientists, doctors, charities,  lactation workers or allergy bloggers need to be thinking hard about conflict of interest in their work and the impact this might have down the line on their credibility. It is this we should all be getting angry about. Parents and babies deserve better. After all, ultimately they are the ones who suffer and deal with the consequences.

Update 9-12-18: The BMJ are currently reviewing their policies around accepting advertising from infant formula companies. If it is important to you that parents are given high quality and independent evidence based information please sign this petition.