Come on ladies!!Call to action SIGN E-PETITION FOR LAPATINIB

Dear all,

This is really important. The NICE, (National Institute for Health and Clinical Excellence!!!), has refused to approve the new cancer drug Lapatinib. Lapatinib is available in the public hospital in Europe and has shown to be very effective to increase progression free-time for the treatment of Breast Cancer… This decission will sentence to death those who can affor to pay for the treatment don’t leave this to happen. Please sign this petetion.

petitions.number10.gov.uk/cancer-pct-funds/Read More

hi happynipple, there seems to be a problem with this link, I signed it last night but my hubby was wantin to sign it this morning, ill try the original link

well done you for starting this, you should be proud of yourself

love

Carol x

Hi,

Here is a working one… I hope… xxxx

petitions.number10.gov.uk/cancer-pct-funds/

done it x

Signed up!

And me !!

When I started Herceptin I was asked to go on a trial for Lapatinib which I decided not to take up. I always thought that if I needed treatment in the future that Lapatinib would be available for me. Lets hope this petition works

Liz xx

Will do…and have passed this link on to another private group of others with bc.
xx

Hi all

I’ve also signed up and will be sending an email to appropriate friends and family to urge them to do the same. If we all do this and if even only a few of our family/friends sign up as well then we should still make a big difference. This is such an important issue, not just now with regard to Lapatinib, but for all new drugs for all sorts of treatments in the future.

Alison x

have done

just done it,and also got my daughter to sign as well. julie

Hello again

If anyone would like to copy and paste the email (see text of it below) I’ve just sent to my contacts list, please feel free to do so! I put all email addresses in the BCC field, so that people won’t inadvertently see other people’s email addresses.

"Please excuse the impersonal nature of this email but this is going to lots of people in my contacts list. THIS IS NOT A HOAX CHAIN EMAIL, but originated by ME.

VERY VERY IMPORTANT!!! PLEASE PLEASE would you consider signing the petition accessible via the link below? I signed up yesterday and quite a few people have signed up since then. I’m hoping that many of my friends and relatives will also sign up - think of me as you do so!!!

The petition creator wrote these words: “I would like new and improved cancer treatments to be readily available to patients on the National Health Service without having to apply to primary care trusts for funding. The present system delays vital treatments and drugs for patients, who have to fight and even pay privately for life saving treatment. There should be no question or hesitation about these new drugs and treatments being made readily available and accessable to everyone, regardless of their financial status. Many patients find themselves on waiting lists whilst their local primary care trust makes a descision about whether or not to fund treatments. Often during this interim period their condition will become more advanced and then the treatment becomes useless. Cancer patients need urgent treatment having to wait six to eight weeks for a decision on funding can mean the difference between life or death.Human life does not have a price and funding should be available immediatly without question.”

petitions.number10.gov.uk/cancer-pct-funds/

Some background information: on Monday this week, there was a report on BBC Breakfast to the effect that a number of health authorities in England have got together and decided to put aside £1million (yes, £1million!) over three years to set up a QUANGO (quasi non-governmental organisation) to put pressure on NICE (the National Institute for Health and Clinical Excellence, the body that authorises new drugs for use within the NHS) to NOT authorise some new cancer treatments. There is one such new drug - Lapatinib - which NICE has just refused to authorise. That means that it won’t be available on the NHS, unless the decision is appealed or overturned, and that anyone who wants it will have to pay for it. The drug I’m on currently, Herceptin, is thankfully currently working wonders, but sooner or later it wll stop working. When it does I’ll be taken off it, and it sounds like this new drug, Lapatinib, might be appropriate for me - but if it’s not available on the NHS … clearly this is an issue very close to my heart! If lots of people sign the petition, then maybe the Department of Health will take notice.

Thank you for reading and I hope that you wll sign up. If you can’t follow the link by clicking on it, please copy and paste into the address bar."

Best wishes.

Alison

Yes, done that. We need to keep bumping this up to the top.

Ann

signed up

signed and bumped !

Anna xx

im trying but keeps saying doesnt understand sign up link used! raaahh

just signed.bump

signed.

Julie

done.

For those having problems with link - you need to remove the word “read” at the end of the URL which is actually part of the message post.

happynipple, I can’t see where this petition refers to lapatinib as such. It seems to be about cancer drugs being readily available on NHS and not having to go to PCT to fight for drugs not available on the NHS. Couldn’t agree more and have already signed up.

However, as I understand it all drugs have to be approved for use in the NHS by a team of the non-medical beaurocrats at NICE. It is these incompetents who cannot appreciate the importance of 2.4 months or 7.5 minutes when you have cancer and are staring death in the eye. All whilst sitting with a calculator (or abacus, more likely) whilst they ponder the cost of life.

With regards to the petition and NICE’s recent decision confirming that they don’t support Lapatinib/Capecitabine combo on the NHS for HER2+ women with advanced or metastatic breast cancer who have experienced disease progression despite being treated with standard chemotherapy (taxanes, anthracylines)and Herceptin. (This excludes those on trials.)

So, if NICE don’t recommend it for women with advanced disease which progresses and are on their 3rd or 4th lines of treatment, I’m assuming I could still fight with my PCT over it and wait 4-8 weeks for a response? (I’ve never been down this road before, so a bit ignorant here). If this petition is asking to dispense with the PCT application process, then how would one get Lapatinib from your hospital when NICE doesn’t recommend a drug and prevents them from dispensing it? Essentially, we need to get rid of NICE.

Apologies if I am being dumb - I think I may have taken too many sedatives with my chemo yesterday :S
xxx

Yes, Lapatinib could be prescribed to you off-license. There is a page here macmillan.org.uk/Cancerinformation/Cancertreatment/Gettingtreatment/Accesstotreatment/Accesstotreatment.aspx which explains how you can go about getting access to non-NICE approved drugs.