Saturday, 16 May 2015

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."

13 comments:

  1. There are so many different diseases out there that need funding, and I've just tweeted this out to help raise more awareness for you. To think that some medication for children is just guess work is shocking :(

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  2. I had no idea that getting the right dose for meds for children is guess work, that is an appalling situation. I'll certainly tweet this for you too, there are just so many diseases most people have never heard of. It's time to stop focusing on the "glamorous" ones as you say and make lesser known illness household names.

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  3. There really needs to be a change to how children's medicine is researched and licensed. This is appalling that they are basing doses on guess work.

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  4. Couldn't agree more. Resonates with me due to my son's autism and its comorbids like the gut issues. I'd not heard of Eosinophilic Gastrointestinal Disease before so thank you for sharing and I've had a good read about it. Will share this.

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  5. I agree that research should be done to work out the correct doses for children. It would be horrible yo be in your position.

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  6. its so sad that in this day and age we are still spending billions and nothing seems to move forward i hope one day that research brings cure and cure saves lives a lot more than it is now x

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  7. I hope more funding it put towards it - its a shame that even now we know so little about so many different illnesses.

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  8. Thanks for this post. The older brother of one of my daughter's friends has Eosinophilic Disease, as well as autism. Before I met the family, I hadn't come across it. You're right, more needs to be done to raise awareness.

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  9. I didn't realise that there are less regulated medicines for children - lets hope this raises awareness

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  10. I've shared the post to help raise awareness xx

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  11. This is terrible that doses for children are guessed at - we surely should be even more careful with what we're giving them?!

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  12. Ooh I'm so sorry x lets get this out there to raise awareness

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  13. How awful - I have never heard of this. Thank you for sharing. Kaz x

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Many thanks for taking the time to comment!

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