I am on a biologic, vedolizumab, for my longterm condition.
I have been on it for 12 months.
I know that it is expensive but it has had an amazingly positive impact on the state of my condition and my health
But there is a crazy NHS commissioning issue for biologic users like myself.
If you do too well on them, then the NHS commissioners decide that you no longer need them and stop paying for them. As a patient this is madness. As a commissioner I understand the argument, but think it is a short-sighted one.
If I now come off my biologic, there are no other non biologic medication options available to me. I know this because I have discussed it at length with my consultant. I have had my condition for 30 years. Over time I have tried all the other medications and in the end they have all had severe side effects, including azathioprine giving me pancreatitis and asacol knocking out all my white blood cells. So if the financial argument wins, then i shall have no satisfactory medical options. Inevitably without medication, my condition will worsen and i shall end up back in hospital. This will cost more money than the medication would have.
The key learning for the NHS should be that now that biologics are becoming more established treatment options, the commissioning rules need adapting. The current guidelines for prescription are too inflexible.
Maybe commissioners need to talk more to patients like myself…?