Petition updateLung cancer patients right to live.Our journey
Christopher GoodwinSolihull, ENG, United Kingdom
Mar 20, 2024

Hi all 

Here’s what’s been happening.

After the EU approved the use of Enhertu for NSCLC HER2 back in October 2023 I decided to chase up the MHRA (The Medicines and Healthcare products Regulatory Agency regulates medicines in the uk) to find out when they were going to approve the drug for use in the UK.

I received an email back from them with the good news that on the 25th January 2024 the Enhertu drug has now been approved in the UK for the treatment of NSCLC HER2.

This is great news however this doesn’t mean Elaine can now get access to the drug Free through the NHS.

It’s now up to NICE to appraise the drug and decide if they wish to put it on the CDF list.

Hopefully NICE will show some humanity and not decide this entirely on the drug being cost effective.

As you are aware from previous updates the appraisal process of the Enhertu drug  for Elaine’s condition is not due till July this year because Daiichii Sankyo (manufacturer of Enhertu)withdrew from the process last June and asked NICE to postpone the process for another year.

Now the MHRA have approved the drug for use in the NHS I emailed NICE on the 14th February 2024 pleading with them to please consider putting the Enhertu drug for treatment of NSCLC HER2 on the CDF list on a temporary basis.They can do this if they wish to do so.Please read the paragraph below taken from the NICE website.

For the first time, we are able to give patients access to a promising new cancer treatment whilst more evidence is gathered on its effectiveness. Where the case for routine use is not clear cut and more evidence is needed to prove cost effectiveness then NICE can now recommend a drug for temporary, conditional use in the new CDF.

To date NICE haven’t given me an answer to my question,I wait in anticipation.

Once I get a reply I will post another update.

Elaine and myself have a meeting with our constituency MP Saqib Bhatti on Friday 22nd,one of the items on our agenda will be discussing the lack of support the Government and NHS England have shown patients in Elaine’s situation and what needs to be done to improve this.

We will also be discussing why terminally ill patients who need end of life treatment so they can share more valuable time with their families are being denied treatment because people in high places are deciding it’s not worth paying for expensive drugs to keep these patients alive if their life expectancy is short.

I would like to finish with a message from Elaine.

Thank you 

Chris

 

So I’ve hijacked Chris’s page just to say thank you for the tremendous support you have all given me.  Latest scan results have been good - the cancer is asleep � (for now) and long may it stay that way.  

But I want you to know that this is down to YOU - every single one of you who have donated to help me please know that every penny has gone towards buying the drug that has given me more time to spend with my family - it really is the greatest gift and thank you doesn’t really seem enough.  The treatment is working which is amazing but the flip side of that is we need to keep on fundraising.  My savings are fast running out and so far I have handed over £107,324 to the drug companies. 

I am still fighting to get this ridiculous situation sorted out my MP is trying to help me but nothing is changing. 

Cancer is a thief - it has stolen my health, my hair, my job, my savings and soon my home but it will not steal my spirit I will continue to fight for all those people who need this drug - it shouldn’t matter what cancer they have.  How dare NICE decide that terminally ill patients are not worth the cost of a drug that statistically may only keep them alive for a short time - we’ve paid just as much into the system as everyone else. Why don’t terminally ill people deserve help too? All life is precious.

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

Thank you so much for your continued support.

Elaine

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