Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

How do you appesl a refusal of compassionate use of non approved drug?

Kkeith
Posted by

Hi,

Our context is one of terminal brain cancer after 22 months, post surgery, post combined radio/chemo, post chemo 6 sessions, post 3 further sessions of ineffective 3 drug treatment, currently only being given steroids and offered palliative support.

We have discovered a drug used in combination with the Keto diet to have enourmous potential and have been in contact with a professor in the USA whose trial results were published in May 2019.

Because it is a non approved drug and the oncologist is unfamiliar with it, we are being told it is not possible. We have made clear we dont accept this reasoning and wish to challenge and pursue a drug which is calLed DON (6-Diazo 5-Oxo L-NorLeucine)... a glutamine antagonist which stops cancer cells obtaing energy by breaking down glutamine.

Can anyone advise me of how to appeal or of sny advocacy group which mighg help?

Medically we are being told there is nothing more that can be done so there is literally nothing to loose and hypotheticalky everything to gain by trying the non toxic treatment.

Kkeith
Madesp
Posted by

Hi Keith the problem here is  TIME. Time is what you don't have even if you wish to appeal. 

I have heard about some people want to try the old drug CLOMIPRAMINE but again  the oncologists will not prescribe if it's not part of the protocol. So what some patients have done is approach their own GP for it and most have prescribed it for them as the paperwork to support the request was shown to the GP. 

Maybe this is the first route you could go down and talk to your GP? Take whatever proof you have. ..if GP can't prescribe they can surely help you through the right channels to appeal. 

Or approach clinical commissioning group for your area

Clinical Commissioning Groups (CCGs) commission most of the hospital and community NHS services in the local areas for which they are responsible. Commissioning involves deciding what services are needed for diverse local populations, and ensuring that they are provided.

Mad 
Kkeith
Posted by

Mamy thanks for that advice Madesp.

K

Kkeith
Madesp
Posted by

Dear K

By the way I  meant TIME is what you don't have  not that you are running out of time but appeals process takes weeks months even and also all the energy needed and worry will drain you.  When you should be spending your time concentrating in getting better. Hope I didn't upset you. X

Mad 
Johnty
Posted by

Dear Keith, I found this article that I thought you might find useful. I sympathise with your situation as there are many drugs in development in the USA for my own condition but it will be a long time before NICE approve them for use

https://www.imperial.nhs.uk/about-us/blog/patients-accessing-treatments-not-offered-on-nhs

best wishes

jane