Rejection of Alectinib 1st line

[Leslie42]

Shocked to find out yesterday that NICE have rejected. Alectinib as 1st line treatment!!!!

Crazy decision as it crosses the BBB whereas Crixotinib rarely does, has fewer adverse side effects allowing people to continue a completely normal life. This drug is for people who are ALK + and tend to be below the age of 50. My daughter is 30 and I know Of people much younger.

This drug enabled this amazing group of people to carry on working/ studying and contributing to society.

This drug also had a median progression free time of 26 months. Crixotinib has about a year.

I know people in USA. Where it was granted approval in 2016 who are going into their fifth year on this.( They were on clinical trials)

My daughter is very lucky that she gained access too this drug 1st line through EAMS.

Oncologists obviously realise it's the best 1st line treatment or she would have been put on Crizotinib which is approved!!!

Breaks my heart for newly diagnosed AlKIES denied this wonder drug

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Leslie42

Hope your daughter is doing well with her treatment.

N.I.C.E are in the process of an appraisal consultation with Alectinib (6th April 2018 - 26th April 2018) and have yet to make their decision, please see link below:

nice.org.uk/guidance/indeve...

I have contacted N.I.C.E who have assured me that their information is up to date and that this medication is under appraisal. However they will look into any conflicting articles.

If you wish to discuss anything you can call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Leslie42

NICE have contacted us to say that their draft guidelines for Alectinib is not recommended, within its marketing authorisation, for

untreated ALK-positive advanced non-small-cell lung cancer (NSCLC) , in adults, however this is what is being looked at in the appraisal consultation.

Please find direct link to this: nice.org.uk/guidance/gid-ta...

Kind regards

The Roy Castle Support Team

[Leslie42 in reply to RoyCastleHelpline]

Thanks again for your reply.

Another quick question.

I am assuming that somebody from The Roy Castle Foundation will be advocating on ALK+'s behalf on the 26th April.?

Look forward to hearing back.

Kind regards

Leslie Ardron

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Leslie42]

Dear Leslie

The staff that deals with drug applications/submissions are not in the office today but someone will respond to you next week when they are back.

Kind regards

The Roy Castle Support Team

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Leslie

Further to our correspondence on Roy Castle attending the appraisal consultation for Alectinib, our Medical Director of Roy Castle Lung Cancer Foundation will be involved in the N.I.C.E process for this.

Kind regards

The Roy Castle Support Team

[Leslie42]

That's great xx