A patient’s plea for data

I have an obsession, and that obsession is data. I instrument my house so I know how hot or cold it is, whether things move or not, how much data I’m sending over my internet connection and my blood pressure, weight and BMI.

As a patient with Crohn’s disease I similarly obsess over trial data, learning what does and doesn’t work (thank you Cochrane) and turning up at my consultant’s armed with PDFs. Yes, I am one of those patients.

For the last three years I’ve been taking Humira to manage my Crohn’s disease and I’m super pleased with the results – I’m better than I have been for years. Humira is an interesting drug and comes from a family of biologics that are a relatively recent development and consequently cost a small fortune (at current BNF rates that’s £352 per injection and I take one every two weeks). Not only do I want to be sure the treatment is medically effective I also want to demonstrate that despite its high cost, the overall “return on investment” is worth the NHS paying for it (by the fact I spend less time in hospital and that I’m a productive member of the workforce).

But more importantly I want to know that these really exciting monoclonal antibodies I’m injecting into myself aren’t going to cause me harm in the long run. They’re pretty new things so we don’t really have any idea what they may or may not do to me over 20 or 30 years (early signs with the first widespread anti-TNFα drug, Infliximab, suggest no problems but who knows) particularly as there have been some exciting failures with biologics.

As a patient with a vested interest in these things I’m a big supporter of All Trials, an initiative my friend Ben Goldacre plays a big part in, which aims to ensure all medical trials are registered and reported (please go sign the petition, I’ll be here when you’re done). I’m therefore pretty upset to see that AbbView (the makers of Humira) are suing the European Medicines Agency to prevent disclosure of data. Patients, trial volunteers, regulators and governments deserve to have the full facts in front of them when decisions affecting your life and health have to be made.

2 thoughts on “A patient’s plea for data

  1. In a similar position. I have Chrohns and have been using Humira for a couple of years (weekly) and its been fantastic never been better. However, I am also a big supporter of the All Trials initative. I certainly would like to get my hands on the trial data. I have a bit of knowledge about these things as I am a preclinical toxicologist doing a lot of work on biologics just now.

    I don’t imagine that there is anything bad or unknown in this data but the efforts made to keep it secret seem to contradict this view. I suppose itt risks a multi-billion dollar income stream for Abbott. Wait untile the biosimilars start eating into the profits then they will be asking for open data..

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