Hi all 

Here’s our latest update.

We had some devastating news last week,we have been told by NICE that Daiichii Sankyo(manufacturer of Enhertu)have again pulled  out of the appraisal process in getting Enhertu licensed in the UK for NSCLC.(remember they did this in June 2023 because they said they wanted more time to submit a robust data  submission)

Daiichii Sankyo have told NICE that they will not be providing an evidence submission for the drug to be appraised which was due on the table mid July.

They have said this is due to NICE changing their method of appraising late stage Oncology medicines.

Our  understanding of this is that NICE have basically gone down the route that if terminally ill cancer patients may have a short life span what is the point of spending taxpayers money on late stage expensive Oncology drugs if they are going to die.Its not cost effective.

This thinking is madness,new innovative oncology drugs are prolonging patients life’s for a lot longer than  they used  to,and no patient is the same so to have this train of thought is morally and ethically wrong on all levels.

This is a massive blow to all Lung cancer patients with the HER2 mutation.

Both Daiichii Sankyo and NICE are  pointing the blame at each other for this dire situation.

We believe this is a  knock on effect due to Daiichii Sankyo not getting the Enhertu drug licensed for Breast cancer HER2 low back in March 24 because Daiichii Sankyo and NICE couldn’t agree on a cost,NICE believe it wasn’t cost effective for the tax payer’s.

Because of this Daiichii Sankyo are,we believe,  of the view that what’s the point in submitting evidence for getting the Enhertu drug licensed if NICE are going to reject it as they did with the breast Cancer data.

We are constantly told NICE is an independent body,however it still comes under the responsibility of the DHSC.

It’s about time NICE had a complete overhaul,they seem to be unaccountable for their actions.They change their appraisal criteria in order to save money at the cost of the most vulnerable patients.

We have to start to question if NICE are the right people to have the responsibility of the Cancer Drug Fund.

By having the responsibility of the CDF they are letting patients die in order to save money.

Unfortunately with Parliament at the moment being dissolved we haven’t got an MP to contact.We will do this as soon as there’s a government in place after July 4th.

The more positive news is the treatment is still working at present. Unfortunately we are now left with the situation of continually having to pay for Elaine’s treatment at a cost of £7,294 every three weeks with no light at the end of the tunnel. It’s hard to know where to go from here.  We are not giving up, we will let you know as soon as we have a plan B! 

We appreciate your continued support and kind messages.  It means the world to our family. 

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

Elaine & Chris