Hi all

We thought it was time for an update.

Since our last update in June not a great deal has changed.Daiichi Sanyo and NICE are still at stalemate regarding the  licensing of the Enhertu drug for HER2 low secondary breast cancer,the reason for this is NICE will not pay what Daiichi Sankyo have priced the drug at for NHS use. I mentioned this because the situation has had a massive detrimental effect in the Pharmaceutical company not submitting their evidence for NSCLC HER2 which i mentioned in my last update was scheduled for July 24.This was our light at the end of the tunnel and also our hope to get the Enhertu funded through the NHS.

I  wrote to Daiichi Sankyo in June asking them if they are going to submit their evidence for NSCLC HER2 to the SMC(Scottish Medicines Consortium)

The SMC has already licensed Enhertu for secondary breast cancer HER2 low for use in NHS Scotland so Daiichi Sankyo has no conflict with SMC’s appraisal methods as they do with NICE.

The reply back from Daiichi Sankyo was-

We're afraid we are not able to provide information on our current submission plans and timelines. Due to company confidentiality, we are unable to provide information or comment with regard to any decisions or future procedures which may be undertaken with the SMC for trastuzumab deruxtecan.(Enhertu)

We still can’t understand why they will not submit their evidence to SMC.

The problem we have is Daiichi Sankyo have taken the attitude that until NICE change their present appraisal methods for late stage oncology medicines,or review their present appraisal methods the pharmaceutical company will not bother submitting their evidence.

This is a catastrophe for NSCLC HER2 patients because when we speak to NICE they will say “we can’t consider recommending the drug for use in the NHS if Daiichi Sankyo won’t submit their evidence for appraisal”

These people are literally playing around with cancer patients lives and have become desensitised to terminally ill cancer patients.

We desperately need Daiichi Sankyo to submit their evidence so we can have a clearer understanding if NICE are the organisation stopping the drug from getting to cancer patients who desperately need the treatment to keep them alive.

Now we have had a change of government we are basically back to where we were 14 months ago.

We have now written to Wes Streeting (secretary of health and social care) asking for help.We await his reply.

We would like to ask all our supporters if they can email Daiichi Sankyo asking them to please submit their evidence to NICE for Enhertu to be appraised for NSCLC HER2.

(medinfo@daiichi-sankyo.co.uk)

Update from Elaine: 

I have had a few setbacks recently and had to spend some time in hospital with sepsis.  However I’m back on track now and the latest scans were good 👍🏼 however, fighting the cancer is nothing compared to fighting the red tape and bureaucracy surrounding getting Enhertu licensed not just for me but for all those that need it.  I’ve always said that I don’t want people to feel sorry for us I want them to get cross with the shockingly unfair system that any one of us can find ourselves in. This is why your support is so important and we have to keep on fighting. 

A million thank yous to everyone who has supported, campaigned, sent us messages and for all the kindness you have shown us.  Unfortunately we still need to continue to crowdfund  to afford further treatment.We tried all avenues to reduce the cost what we are paying for the drug which includes asking Daiichi Sankyo for a discount or the drug at commercial cost which they have refused to do on both accounts.To date we have paid over £150000,we had hoped after 14 months of fighting we hoped this nightmare situation would have been resolved.

Thank you from the bottom of our hearts❤️

https://www.gofundme.com/f/our-mums-lung-cancer-fight

 

Elaine & Chris