The department of health states 'In
the interim, it is not acceptable that funding for licensed treatments
like Tarceva should be withheld from patients simply because guidence
from NICE is unavailable'.
My Name is Deanne Jenkyns, My husband Jimmy was diagnosed with Non Small Cell Lung Cancer on the 27th April 2006. A day that we will never forget it turned our lives upside down. I immediately made it my quest to find the best possible treatments out there for him and have explored many other options. Options we were not told about and through my own research I have found other avenues and options. We have had to fight every step of the way not only the disease but for the right medical care. My strength to do this has came from my husband all the way he has been so positive and not once has he complained about his condition. Many approved drugs are being denied to patients because of cost! We are fighting for the drug Tarceva which is approved in Scotland on the NHS but most hospitals in England are denying it to their patients hiding behind NICE guidelines. Some PCT's in England are giving it to LC patients, others are not! A life is a life and regardless of where you live you should have access to approved drugs. There are very little options available to LC patients to deny new treatments is just wrong. We are paying for the drug at a huge cost of £1741.00. We were able to borrow the funds to do this. Other people cannot, patients are being told no when they ask for Tarceva even when Chemotherapy is not working for them or making them ill! I feel so angry that patients are in affect been told go away and die! Tarceva may not work for everyone but they should be given the chance to try these new treatments. What is the point of putting billions into Cancer research when new advances are being denied to patients. Jimmy's CT scan results are on the home page of the site. We will be taking this to our next appeal. If you are finding yourself in the same position as us we want to hear from you. I can be reached through my website message boards or through email.
An Appeal Hearing took place
on 6th June 2007 in London. It is hoped that NICE will look again at
their decision and ensure that patients, who would benefit from it will
be able to access Tarceva. The decision from the appeal is expected
by the end of June 2007. In the meantime, as indicated by NICE, patients
should not be denied access on the basis of their decision, as it is
dependent on the appeals process.
I received this information from Susan Christie today 6th September 2007
chief executive Mike Unger has been in contact with NICE re the erlotinib appeal. Their response was as follows:
‘I’ve checked on progress with the appeal, and the appeal outcome has not yet been submitted to the Institute’s Guidance Executive. This means that in theory the earliest it could be considered by Guidance Executive is next Tuesday, and once considered by Guidance Executive it could be published the following week. On this basis, I think it would be safe for you to post a note on your website along the following lines:
“The Roy Castle Lung Foundation does not anticipate receiving any further information about the NICE appeal on erlotinib (Tarceva) before mid-September at the earliest. As soon as further information is available we will publish it on our website.”
Unfortunately I can’t give you any further information about when we anticipate the appeal will be submitted to Guidance Executive. ‘
Mike Unger will be following this up again w/c 17th September. As soon as I have any further news I will let you.
Statment from Deanne
It is not acceptable that NICE are dragging this out for so long! Time is precious for cancer patients. NICE are supposed to fast track drugs for cancer patients. When I attended the meeting June 6th we were told a decision would be in three weeks?? We are now into September!! Patients are dying before they get the chance to try this drug becasue they are unable to raise the funds!
