I just read the news about the NICE refusing to aproved the use of Lapatinib on the NHS. I think this is awfull and totally Auful and totally unacceptable. I am not on the situation of needing myself the drug but I think, NHS is there to guarantee a basic right, the access to free and quality health treatment. To not to approve the drug, means, once more, that your prognosis and quality of life is determined by how reach you are which in a democratic and advanced country is completely unacceptable. I think we should start a complain campaign maybe gathering signatures and sending them to the politicians or wherever can be sent.
Let me know what you think ladies.
I’m with you… after the success of the “Katie Price” thing, the only way to do things is to get behind something and fight!! The same thing was done regarding herceptin in England a couple of years ago…A lot of ladies died, which is so sad and it makes me real angry… It looks like the same thing is happening with Lapatanib… I do not understand why a drug that has been found to help life is written off. Yes it’s expensive, and the newer it is the more expensive it appears to be. But NICE are playing God with peoples lives and it just doesn’t sit well with me!!! Money is wasted every minute in the NHS… a lot of it on Managers… sack a few of them!! that would pay for it!!!
This subject needs to be brought to the public attention asap… the public know what NICE are like, but a lot of publicity is not what you know… but who you know!!
The thing that reall gets to me about all of this, is that the NHS do not negotiate over pricing with the drug companies. I do not know of any other field where this happens. After all the NHS must be a major purchaser that is considerable negotiating power
This makes my blood boil it really does! When we’ve been dutifully paying national insurance all our lives where is the insurance now?. How can people in their ivory towers dictate the value and quality of life? How can the UK compete and call itself a first world treatment centre when it deprives people of treatments which are accepted as the norm in other countries? Like some of the others here I don’t need lapatinab (yet?) but who knows what is around the corner? Thankfully I have private health insurance but still I would only get active treatment and not maintenance if that was required. and anyway why should it be available only to those who are fortunate enough to have a work (or other) policy. It’s all wrong, especially when the benefits have been proven.
I would be an ardent supporter of any campaign against the NICE (nasty more like!) policy.
Here is the letter. I am thinking of sending it to the main newspapers but I am not sure what do I need to create a likn for the signatures. Please correct and add and take off whatever you think…this is for all of us
The National Institute for Health and Clinical Excellece?! has refused to approve Lapatinib cancer drug for advance breast cancer. Once more, the NICE is playing God, toying with the life of many Breast Cancer Patients who could benefit from this drug which has shown to its effectiveness to increase progression-free time in the treatment of metastatic breast cancer and that is why most of the European countries offer the treatment in their public hospitals. In view of this, we can only conclude that the NICE is denying us, breast cancer patients, the best and latest of the treatments which has proven its efficiency and are good enough for other countries where, surprise, surprise!, the rate of cancer treatment is far better than in U.K. where statistics are not very satisfactory. This is just the same situation that happened a few years ago with another life saving drug, Herceptin for HER-2 positive cancer that was finally approved, thanks to the tenacity of Ann Marie Rogers who won in the High Court in 2006 against the Swindon Primary Care Trust. I think there are not enough words to express how shameful this situation should be for the NICE. First of all is denying a basic human right to access to free health service, (which by the way is there thanks to everybody contributions), is condemning those who are not wealthy enough to a quick and certain death, (How democratic is that!), and also forcing individuals, like Ann Marie Rogers, who are already dealing with a lot in their lives like a breast cancer diagnoses and treatment, to have more stress having to fight the unfairness of the death sentence that NICE imposed with its horrendous and, which it’s more important, incorrect, invalid, mistaken decisions. We, breast cancer patients and survivors insist a revision of NICE decision on Lapatinib and also we would like to insist in the prominent role that breast cancer association should be playing in these, supporting more effectively to their communities with a much more clear and active involvement in NICE decisions. It shouldn’t have been Ann Marie Rogers the one who took Swindon Primary Care Trust to court but the cancer associations who actively campaign for financial support but not for ethical, legal, live support!. Institutions are there to support individuals is it not just time to prove that!.
Very Good!!
Go for it!! I support you!! I have a friend here who is going to need it… Herceptin might not be working for her at the moment and has had a recurrence in the other breast… They have mentioned Lapatanib but are unable to secure it for her at the moment… We are in scotland and I know things are slightly different up here and it shouldn’t be!!.. We had Herceptin when England didn’t… that’s why It makes me so angry!!! If we wait till someone has to take their primary care trust to court it could take years to secure it that way. What we need is a public outcry!! and NOW!!!
Yes, NICE horrible policies and management called to action. But please modify my letter. English is not my first language!!! and also if there is anything else you’d like to add feel free
line 2 'advanced’not advance and ‘lives’ not life.
‘is good enough’ not are good enough.
'First of all Nice is…'missing word
dealing with a diagnosis not diagnoses[re Anne-Marie Rogers]
insist on not in
Did you mean ‘life support’ not ‘live’?
I feel odd to be suggesting these minor alterations because
its a wonderful letter and you are pretty special for writing it.xxx
Great letter, I to would support any petition. We all live in fear that we will need one of these drugs one day (albeit in the very back of our minds) and we need to fight for ourselves as no one else will. Good luck and may your God bless you. Marion. xx
I have now signed the Downing St petition but there are only 45 names on there. Please jump in and sign. There is a lot of research going on out there which never even translate to treatments because companies know that NICE won’t approve on cost grounds. This is especially true for treatments that only help a small minority of people. It’s also why we are losing some of our best cancer doctors and scientists to other countries.
I’ve just signed it and have posted the link to my facebook page too!.
Well Done Happy Nipple what an amazing letter even more amazing that English is not your first language, one would never know.
I have just signed. Thank you so much for starting this petition. I am due to start Lapinatib next week. I consider myself very fortunate that my husband happened to have private healthcare through his work so I am hoping that they will fund this, my Onc said if they don’t he can get it for me under a clinical trial but I would be devastated if I didn’t have that option. I have bone and lung secondaries and my children are only 10 and 7, I want every chance there is to see them grow up (even though I know thats unlikely). We should all have a chance to try this drug, regardless of circumstances.