Hi All 

Here’s what’s been happening in our fight to get Enhertu licensed for NSCLC HER2 patients.

On Friday 20th October our local MP Saqib Bhatti raised Elaines case again in the House of Commons to get Enhertu approved/licensed by NICE for the treatment of  NSCLC HER2.

He presented Elaine’s case to Will Quince(Minister of state for Health) Hopefully Will Quince will support our fight to get the Enhertu quickly to Cancer patients who so desperately are in need of the drug. We wait to hear. 

 

On October 27th we had a teams meeting with a representative from NICE to discuss Elaine’s situation and why there was a postponement of the appraisal of the Ehertu drug for another year. As mentioned in a previous update this was because Daiichii Sankyo decided to pull the plug on the appraisal process by saying they wanted more time to allow them to make a suitably comprehensive and robust submission to NICE, by doing this NICE are unable to go any further until Daiichii Sankyo decides to resubmit the data. By withdrawing their data from the appraisal Daiichi Sanyko have also prevented NICE from considering putting Enhertu on the Cancer Drug Fund list which means it cannot be funded as an off license drug for those who need it. 

Why Daiichii Sankyo has asked for more time is beyond us because they have just been given approval in the EU on the same data (destiny lung02)Please see below: 

ENHERTU® Approved in the EU as the First HER2 Directed Therapy for Patients with HER2 Mutant Advanced Non-Small Cell Lung Cancer

Approval based on DESTINY-Lung02 trial results where Daiichi Sankyo and AstraZeneca’s ENHERTU demonstrated a confirmed objective response rate of 49.0% and median duration of response of 16.8 months in previously treated patients.

Even our Oncologist said he was surprised by their actions and he had known drugs be appraised and licensed on a lot less data than the destiny lung02 study data.

Basically Daiichii Sankyo’s actions are preventing the Enhertu drug from getting to NSCLC patients in the UK through the NHS unless they pay for it Privately.Maybe that is their plan?

When we emailed them to ask why they had caused the delay in the appraisal they replied as follows:

“As is so often the case with any licensing and funding assessments, these are complex and evolving situations which are influenced by many factors.

“Unfortunately, due to company confidentiality, we are unable to provide any information as to the progress of the procedures being undertaken for trastuzumab deruxtecan (Enhertu) in HER2-positive NSCLC in the UK at this time” This is not the first time they have used the confidentiality excuse!

Last week we sent an email to [UK General Manager] who is [UK General Manager] of Daiichi Sankyo UK literally begging [The UK General Manager] to reconsider our request for compassionate use.

 [The UK General Manager] didn’t even have the courtesy to reply personally, the answer came back more or less immediately saying basically we’ve told you before our stance hasn’t changed the answer is no but if the situation changes we will let you know!  

We queried if [The UK General Manager]  had actually seen the email that was sent to [The UK General Manager’s ] email address and the reply was: 

Correspondence is usually handled by the Medical Information team which is why you have heard from us rather than directly by [The UK General Manager].

We thought it rather rude that [The UK General Manager] of a Company whose mantra on their company website is ‘ compassion for patients’ cannot show the slightest amount of compassion to a desperate patient who is fighting for more time with her family. 

We are now appealing to all our supporters to help us by emailing Daiichi Sankyo on our behalf asking if they could reconsider their position? We have come up with a paragraph below to make it easier but obviously you can amend this if you wish to! We would be really grateful and are hoping that people power might change their minds: 

 

Dear The UK General Manager

I am writing in support of Elaine Lynch and respectfully request that you reconsider your decision to provide Enhertu to her on a compassionate basis.

Scans are proving that her treatment is working but after paying your company almost £70,000 to date, she is quickly running out of funds and is faced with the prospect of selling her home.

Please can Daiichi Sanyko show some compassion and humanity towards this patient.

Thank you

Please could you cut and paste this to your email and send to

Medinfo@daiichi-sankyo.co.uk 

Unfortunately we believe Daiichii Sankyo are not very happy that we named their UK General Manager in our update (not sure why)They have complained to Change.org to have the name removed from the update.It has now been replaced with UK General Manager.

 

Thank you from the bottom of our hearts your support means the world to us. Younger women are getting Lung cancer at higher rates than men - yet there is no parity with breast cancer patients, they receive this treatment free on the NHS (quite rightly so) whilst Lung cancer patients face a very different fate. We cannot in all conscience allow disparities in access to life saving treatments when it comes to different types of cancer. A life is a life and this is a matter of life and death. We are fighting for everyone affected by this and we won’t stop. 

We have amazing support on our gfm page unfortunately we will need to continue with the fundraising until Daiichi Sanyko decide to do the right thing and show some humanity. 

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

Thank you Chris and Elaine