Hi All
It’s been a few weeks since our last update so here’s what’s been happening.
Today Elaine has had her 6th cycle of Enhertu ,she is due to have a scan this week where hopefully we will continue to get good news on the progress of her treatment.
She had her results back from her brain scan last week and we are pleased to say the mets have shrunk and there is no sign of any spread.This could be due to both the cyber knife radiation and the Enhertu working together.Either way it was great news.
Due to the good results from the last Lung scan Elaine’s Oncologist applied for the Expanded Access to Medicine Program which the pharmaceutical company Daiichii Sankyo offer. This would allow us to have the drug free of charge.
Her Oncologist filled in the application form and put a very good case forward for Elaine to be accepted into the program.Unfortunately Daiichii Sankyo again said no.This came as a big surprise to her Oncologist especially when he informed Daiichii Sankyo that the drug was working on Elaine’s cancer.
We also found out in July that NICE who were in the process of appraising the Enhertu drug for NSCLC have now decided to postpone the appraisal for another 12 months. This means that we will need to self fund for the next 12 months which is unsustainable.
This came as a great shock and is a massive kick in the face to all NSCLC patients who desperately need this drug now.
When are NICE going to understand they are playing with people’s lives?
Cancer patients are dying because they are working at a snail’s pace.
This is on Samantha Roberts watch,the Chief Executive of NICE,she should hang her head in shame. We have tried to contact her but are being ignored.
lung cancer kills almost twice as many women as breast cancer and has done since 1987,surly this is another good reason to get the Enhertu drug licensed now.
Ironically once we can no longer afford the drug the NHS will take Elaine off the Enhertu treatment which is working and put her on an alternative chemotherapy which may not work.
Surely this is a complete waste of taxpayers money.
Now the government have come back from Summer recess we will be chasing up our parliamentary petition and continue to lobby anyone in Government who can make a difference to our fight of getting the drug licensed sooner rather than later.
We are still trying to get answers from cabinet ministers but unfortunately if you don’t live in their constituency they are not interested in replying back.
Because of this we are now appealing to any of our supporters who live in Steve Barclay’s (Secretary of Health and Social Care) constituency and Rishi Sunak constituency to contact both of them on our behalf and make both of them aware of our fight.
On a final note we have Elaine’s birthday fundraiser coming up on 18th September, we hope to raise more funding so she can continue her treatment. We have some amazing raffle prizes which have been donated - look out for the launch on 18th September. To date we have paid nearly £50,000 for her treatment so we have to keep the fundraising going.
Apart from being made to pay for the drug the Government have taken their cut out of this by charging us VAT. This is morally wrong and a disgrace, they too should hang their heads in shame.
Thank you once again for all your support, we couldn’t do this without you.
Elaine & Chris