Hi All
we hope you have all had a wonderful new year. We thought it was time for an update.
The new year has brought with it the very sad news that Jonnie Irwin has sadly passed away after an epic fight against this deadly disease. Jonnie who along with Esther Ranson was one of the more ‘high profile’ lung cancer sufferers was just 50 years old, may he rest in peace. For those of you who are not aware lung cancer is the leading cause of cancer deaths - all you need is a pair of lungs, once it reaches stage 4 it is considered terminal and the only option is to contain the spread and hope for more time. Enhertu is giving Elaine more time. The last few scans have confirmed the cancer has stopped progressing which is amazing news but we know this won’t be the case forever. Whilst the drug is working for Elaine she continues to pay the drug company £7,294 every three weeks.
This highlights how important it is that the powers that be (Government,NHS,MHRA,NICE and the pharmaceutical companies)all get their act together and start getting the treatments that cancer patients so desperately need NOW not when it too late.
Not a great deal has changed and unfortunately since the DHSC ministers reshuffle last year we seem to have gone backwards.
Instead of DHSC Ministers supporting us in getting the Enhertu drug to lung Cancer Patients who so desperately need it they are replying to our correspondence by basically copying and pasting what we were told 8 months ago.
We are now concentrating our efforts at the MHRA(Medicines and Healthcare Products Regulatory Agency)and NICE.These are the people who can make this happen and get the Enhertu drug to NSCLC HER2 patients before it’s too late.
With the EU approving the use of Enhertu for NSCLC patients last October we can’t understand why the UK NHS Agencies are quite happy working at a snail’s paste.
Please remember the trials and Destiny lung02 studies for use of Enhertu for NSCLC HER2 have all been completed, so why Daiichi Sankyo is holding the appraisal process up is beyond us.
Daiichii Sankyo and AstraZeneca who manufacture and sell the drug are still not budging on supplying the drug on compassionate grounds.
Lung Cancer is the biggest cancer killer in the UK,this has got to be a good enough reason to get every new innovative drug to these patients now,not when it’s too late.
Last October a Lung cancer drug called Mobocertinib for certain lung cancer patients was withdrawn from the market by a pharmaceutical company.This means it’s now no longer on the CDFs (cancer drugs fund) list which means it’s one less treatment for lung cancer patients.Nice have not yet replaced this drug with another lung cancer drug.
On Wednesday 14th February, Lord Rogan (an Ulster Unionist Peer) will be asking the Oral Question that, following the announcement that Takeda Pharmaceuticals plans to withdraw Mobocertinib from the market, what steps the Government are taking to ensure that lung cancer patients have access to the medicines they need.
Hopefully this will have some kind of impact and get NICE to consider a replacement drug on the CDF list.
Thank you for your continuous support.
https://www.gofundme.com/f/our-mums-lung-cancer-fight
Elaine & Chris