It’s time I had a say in my medical treatment

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People have been talking about personalised medicine for ages. It’s all the rage in the NHS now with The 100,000 Genomes Project. This project is committed to sequencing 100,000 whole human genomes, from 70,000 patients, by the end of 2017 to help bring in better treatments.

This is because medical professionals are using genetic sequencing to enable them to separate people with similar symptoms into far narrower groups and target medicines at them. For example last year, researchers from the Wellcome Trust Sanger Institute determined that the most common and dangerous form of Leukaemia is actually eleven distinct diseases that respond differently to treatment. Now that the cost of analysing an individual’s DNA is significantly less expensive, it will become possible to link a person’s genes with specific medicines and even diets.

This is great news, in a world where, by way of example, less than 4% of cancer patients actually participate in a clinical trial. In other words fewer than one in twenty five patients contribute to developing the new knowledge about a condition that informs new treatment plans.

So the flaw in the personalised medicine plan is that the only person that the Government and the medical profession are not consulting is me – the patient!

Why not?

I am a patient living with a long-term condition, ulcerative colitis / crohns. I have had this for 30 years. I know a lot about my condition but I am never consulted on my treatment. I have had several different drugs over the years, from azathioprine – which gave me pancreatitis; asacol – which knocked out all my white blood cells, and salazopyrin, which never fully controlled my condition. Over the time my condition has gone up and down.

Now for many sensible reasons, drug dosage is very carefully controlled in any healthcare system and the drug companies are equally tightly regulated. But in a world of ever increasing healthcare problems and healthcare costs, it is time to relook at this approach.

I am on a biologic, vedolizumab, and it is working. I love it. However, it is working too well. I am classified to be in remission and so the NHS now wants to take it off me. If they do, then inevitably my condition will worsen. The NHS attitude is so binary. I am well or I am ill. I take the infusion or I don’t. Why can’t I have a smaller dose? It would cost less and it might work just as well. The answer is that the clinical trials have only led to approval for the drug based on a standard dose. This is therefore what NICE guidelines accept. But why shouldn’t I be allowed a say in this? It’s my body and I have been living with the condition, longer than any doctor treating me. In many ways I am an expert patient with living experience of the condition.

We need to change the approach. It’s time for the individualisation of drug dosage based on personal response patterns to drugs and not on old fashioned and out of date clinical trial methodologies. We need to bring in individual DNA based personalised medicine, and we need to drive active patient collaboration and participation in drug and treatment decisions. We can’t just leave this to the supposed professionals. We need to do 3 things:

  1. Enable patients to have a say in their treatment and in the drug choices and doses
  2. Enable different types of observational research study based on different levels of patient participation over different times.
  3. Establish formal expert patient councils to advise the NHS based on patients living with conditions or disease for long periods of time.

It’s time to get truly personal.