Hi all 

Just a follow up from my previous update on the 20th March. We have now received a reply back from NICE regarding getting the Enhertu drug on the CDF list on a temporary basis until NICE carry out a full technical appraisal. Unfortunately again they have avoided the question and are still adamant they will not consider this until they have carried out the appraisal on the drug even though the MHRA have approved it and  deemed it safe to use on NSCLC patients with the HER2 mutation.This again is a big blow for all cancer patients who have to self fund this drug so they can stay alive.

Why NICE are taking this stance is beyond apprehension. The trials and data have all been completed and the Enhertu drug has been used for Elaine’s condition for the last 3 years in the USA. It has been proven and tested,so why the delay in getting it to the cancer patients in the UK who are so desperate is beyond belief. 

What is the point in spending millions of pounds in developing a miracle drug if the pharmaceutical companies (Daiichi Sankyo/AstraZeneca)and the NHS deny it to the patients that need it now.

Nine in ten cancer survival rates are worse in Britain than in Europe owing to delays in new drugs.if we truly want this to rise and the NHS is genuine in its long term plans on improving five year survival rates it needs to put money behind it.Otherwise England will fall further behind and thousands will miss out.

These people are playing god and deciding who has a chance to live or die.

We start to question if NICE is fit for purpose or requires a complete overhaul.

The Enhertu drug is scheduled for appraisal in Mid July 2024,however this could be postponed again if the manufacturer of the drug (Daiichii Sankyo)decides again to pull out from the process as they did in June 2023.

Unfortunately we are now at the mercy of the pharmaceutical company and hope they do not repeat history.

Our constituency MP Saqib Bhatti had a meeting with a representative from Daiichii Sankyo in April,he asked about providing the Enhertu drug for Elaine on compassionate grounds,unfortunately they again said no.

Our costs up to date are as follows 

Daiichii Sankyo /Astrazeneca

£116,982

NHS                        

£4960 for a nurse to give Elaine the chemotherapy and the hospital Pharmacy to dispense the drug.

To add insult to injury we are being taxed on the £116,982,apart from the government failing cancer patients they are also taking their pound of flesh.

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

Thank you for your generosity and continued support.

Chris & Elaine