Why we need a culture shift on medical research in children - for Eosinophilic Awareness Week

Yesterday BBC News reported that the Nuffield Council on Bioethics called for “a culture shift in medical research to make sure children can take part.”

I’m sure many would have the (understandable) knee jerk response that using children as guinea pigs isn’t top of their list for culture change, the more extreme response I heard on social media was that this group advocated using children as “lab rats”. Nothing could be further from the truth.

Most new medicines today are designed for adults, with adults as the target user group. Not only does this mean children are faced with fewer options for treatment but doctors have to guess the appropriate paediatric dose for these medicines. Worse still, fewer drugs are licensed for children - and only tertiary level care can prescribe drugs for children without a paediatric license, and then at their own risk. The licensed drugs are not necessarily safer just because they have been around a while either - medical research and knowledge moves fast, the older drugs often give an inferior form of treatment.

Perhaps most worrying is that children break down drugs at a different rate to adults so doctors are really basing their paediatric dose on guess work. The risks involved potential more than outweigh any considered risk of participating in research. You might think this only affects a small percentage of people - but you would be very wrong, and it’s something we are acutely aware of here.

Three of my children have Eosinophilic Gastrointestinal Disease, which as an “emergent disease” doesn’t have a clearly defined treatment protocol. Treatment usually comprises of symptom management and a few more risky options for the worst affected. For their reflux, all three are on proton pump inhibitors. At the maximum dose - and have been for YEARS. There is no license for that, no data for long term use in children, so we agonise regularly over the decision to keep them on these medicines. Then there are the pain medicines - the dosage difficult to titrate and resulting in neutropenia (low white blood cell count) and other health risks.

Next week is Eosinophilic Awareness Week, a debilitating condition involving non IgE allergic responses to food and environmental proteins, now thought to be autoimmune in nature. You can read about EGID here and on the FABED charity site here.

So this BBC news article was really relevant to us.

Gastro research is drastically UNDER FUNDED. It is not "glamorous" and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. Gt Ormond Street Hospital have a Gastro Research Project that will include related conditions/problems and FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED are also the UK partners supporting the United States Eosinophilic Awareness Week next week, coordinated by APFED. Two years ago they made this video to promote awareness. Read more about Eosinophilic Diseases here.

So next week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK. Discuss the ethics of testing drugs on children and don't make knee jerk responses to new reports. Because as Prof Modi said this week: "Of course decisions involving children are never easy, but this should not be an excuse for inaction; the danger of not developing the evidence base is far greater than the risks of recruiting young people to well-run, carefully regulated programmes."

Fabed from the Beginning - Guest Post

Unless you are new to the Recipe Resource, you will know that this week is EOSINOPHIL AWARENESS WEEK which is being co-hosted between 

APFED in the USA and FABED here in the UK. 

FABED is a wonderful charity which support those of us living with the confusing nightmare that is all too often EGID/ Simply put, EGID (Eosinophilic Gastrointestinal Disease) is an inflammatory condition thought possibly to be autoimmune. It involves the immune system, in a local response to food and environmental proteins. These ARE allergies, but like Coeliac Disease, Crohns or something like eczema it's a local reaction, not a systemic (whole body) response so you cannot test for these types of allergies. EGID can only be diagnosed by Biopsy.  

Here is the story of the wonderful Lucas family, dealing with multiple cases of EGID and how FABED was started.

FABED from the Beginning

Back in the olden days when Emma-Kate asked us to write a guest post for the excellent Recipe Resource (well it seems that long ago!), we said “No problem, will have it to you in a flash”.  Well it’s finally here, so as every one knows it’s now time to sit on the carpet in a circle, legs crossed and listen to the story... (or pour a large glass of something, you may need it by the end!)

FABED was conceived in 2005 and became into being in 2006.  It was the brainchild of 2 families (Lucas and Cordell), after visiting the APFED annual conference and leaving a little shell shocked.  As to the why we felt the need, it is important to understand the family story.  The Cordell family story that started the whole chain reaction is here, we have never really told ours, what follows is a VERY abridged version (honestly, this really is the short one) of the Lucas family WHY?