I recently had a visit from the trial people for the drug I’m testing in the MADE trial. This is month 15 of a 2 year trial.
I asked what would happen at the end of the trial and was disappointed by the response. We simply stop getting the visits and stop getting the tablets. We can go to our GP and ask to take Minocycline as it is a registered medication but we wouldn’t be able to get it in the high dose that we currently take as we could potentially be taking a far higher dose than usual. Our Gp could also refuse to prescribe.
No one will monitor the impact of stopping the medication, which seems very short sighted on the part of the researchers as it could provide valuable information.
I acknowledge that we don’t know if we’re taking the placebo, 200mg or 400mg and will apparently never know, which again seems wrong. I can’t see any reason why we shouldn’t be told if we want to know.
IF the medication is proved to have worked AND we’ve been taking it – it could have drastic effects on our well being by suddenly ceasing the medication, so not to be monitored seems strange. The placebo may have had a positive affect for some people simply because they were taking something. – again, not to assess the impact of ceasing the medication seems like a missed opportunity.
I think more work needs to be done to support patients post trial as simply to abandon them seems to lead me to revert to the use of the phrase ‘Guinea pig’ which I’ve always spoken against in the past. They look after you well while you’re usefully trailing medication but then abandon you when you’re no longer useful – very sad.
No one appears to consider the effects finishing a trial may have on the participants or in fact measure this outcome. Don’t get me wrong, I’m still very much in favour of involvement in research and I’ll be looking for the next opportunity as soon as I’ve finished this one, but not everyone may be able to move onto a new trial. I think more work needs to be done on post trial support and monitoring.
I wonder if anyone out there has had any good or bad experience once they’ve finished a medication trial…..?