You are here

PCT funding

Hello All,

Been a while since I've posted on here but would benefit from some of your previous experience. After 11 years of my Glivec being funded by Novartis as part of the original drugs trial in the UK I've been told by my consultant today that has now stopped and I have no funding in place. He has given me a months supply of Glivec only and said that he will apply to my PCT to see if they will fund.

Have to confess to this having been a bit of a shock:

a) had no idea the trial was coming to an end and would have expected a notice period to allow us to get funding in place before the drugs stopped.

b) Did not expect to only be guaranteed a months supply.....what happens after then? The consultant did not know.

c) I've been lucky being on the trial and haven't had to go through this before. What is the process and has anyone got any hints or tips on how to get the funding in place?

Thanks all for your continued support - on a positive note, my bloods, pcr and spleen all continue to be good after 11 years, so not complaining.

Lorraine

 

Hi Lorraine

I would not worry - as Glivec is recommended by NICE for use on the NHS in your situation, I can see no reason why the PCT won't fund it. Indeed, I believe they are obliged to do so. As far as I know, all your consultant needs to do is prescribe it (i get 4 monthly prescriptions - some get longer, some shorter depending on how often you are seen). It is best if they do home delivery though as it's cheaper for the PCT (no VAT).

Where are you being treated?

Best

Richard

Hi Lorraine, do not worry- I am surprised your consultant was so vague! He/she should know that imatinib at standard dose is first line therapy (should a transplant not be suitable) on NHS. This will not change so don't worry. As Richard has already said, all PCTs are requiredby law to reimburse 400mg imatinib.

Best wishes,

Sandy

 

 

Hi Both

Thank you for your advice - has made me feel a bit better about things. The consultant was actually quite negative about things so it's good to hear some positivity from you both.

I'm sure it will all get sorted and hopefully soon. However, I will feel much easier when I know it is.

Thanks again for your continued support.

Lorraine