Hi all
It’s been a while since our last update,unfortunately nothing has changed.if anything our fight for getting Enhertu licensed/funded for use in the NHS has got drastically worse.
I emailed Wes Streeting (Secretary of State for Health and Social Care)asking him for help in getting the Enhertu drug funded in the NHS for Lung cancer patients.The reply came back as follows
Dear Mr Goodwin,
Thank you for your correspondence of 16 July about access to trastuzumab deruxtecan (Enhertu) for the treatment of lung cancer. I have been asked to reply.
I was very sorry to read of your partner Elaine’s health problems, and I appreciate your concerns.
As you may be aware, the National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the NHS on whether medicines represent a clinically and cost-effective use of resources. Its recommendations are based on a thorough assessment of the available evidence and are developed through extensive engagement with stakeholders and experts.
NICE announced that it had terminated its appraisal process of Enhertu, as the manufacturer (Daiichi Sankyo) did not provide an evidence submission. This meant that NICE was unable to make a recommendation on the use of the medicine in the NHS. Information about this can be found at www.nice.org.uk/guidance/ta976 I understand that this news will be very disappointing for you and Elaine, as well as all others affected.
It may be helpful for you both to know that where a treatment is not currently routinely commissioned, a clinician can make an application for funding of that treatment to the relevant commissioner, on behalf of their patient. This is known as an individual funding request (IFR). In making an application for an IFR, clinicians must demonstrate that the patient in question is clinically exceptional compared to the wider group of patients and is likely to derive greater benefit from the treatment. You and Elaine may wish to discuss this with her clinician.
I am sorry for what I understand will be a disappointing reply, but I hope it is helpful in clarifying the Department’s position.
Yours sincerely,
Correspondence Officer
Ministerial Correspondence and Public Enquiries
Department of Health and Social Care.
We have had this same reply so many times over the last 14 months,they just don’t seem to care.As for them recommending the IFI route we would stand more chance of winning the lottery jackpot every week.
As you can see we have been fobbed off again.
It’s time the DHSC stopped calling NICE an independent body and stepped in to sort this horrendous mess out.
Cancer patients are dying because this so called independent body is dragging their heels in licensing life saving late stage Oncology medicines.
Daiichi Sanyo still refuse to submit their evidence to NICE for Enhertu to be licensed for the treatment of NSCLC HER2.They still haven’t even submitted their evidence to the SMC (Scottish Medicines Consortium)which as I said in July they do not have a problem with the SMC appraisal criteria. It seems so cruel that they are holding the Enhertu drug back from cancer patients who do desperately need this treatment.
NICE are still blaming Daiichi Sankyo and Daiichi Sankyo are still blaming NICE.The only people suffering from this is terminally ill cancer patients.(Shame on you both)
Until Daiichi Sankyo submit their Evidence we can never know if it is NICE who is stopping the drug getting to NSCLC patients.
We will continue to lobby our MP and keep pushing NICE and Daiichi Sankyo to get their act together.
Thank you all for your support and kindness
Chris &Elaine
Here’s a message from Elaine.
I was lucky enough to celebrate my 60th birthday recently. My amazing family whisked me away for a few days on a surprise trip and we made fabulous memories and took lots of photos 🫶.
Three years ago when I was newly diagnosed I was unsure if I would even reach 60. Growing old is a gift and we should never take it for granted.
It is thanks to every single one of you generous people that have supported me in this fight, either with donations, kind words, trips out fundraising events, coffee and cake etc. that I am still here today and able to spend this extra time with my family and friends. I couldn’t have done it without you. You have truly made a difference and given me the gift of a longer life by enabling me to purchase the drug I need to survive as long as possible. I and will be forever grateful 🙏
We found out today that my latest scan results are good. Everything is stable, no progression and no spread. I still have a long hard road ahead but I am winning the battle for now . My aim is to win the war. To do this I need to continue with the Enhertu which means finding £7,294 every 3 weeks until such time as NICE and the drug companies can come to some agreement and put the lives of desperately ill people before money.
We recently had the very sad news that my amazing fellow Enhertu warrior friend died over the weekend, she and I had the same diagnosis and fought the same fight but the drug companies who had the gift of compassion at their disposal refused to help and could not care less - how do they sleep at night?
I will keep the fight going for her and all those coming up behind us who may find themselves in this horrific situation.
Thank you once again for your support it means the world.
Elaine xx