Her2+++ The Her2 Crew - this will be a thread dedicated to pestering NICE and the NHS to fund our drugs

This is the meeting on Monday and that seriously unpronounceable new drug Palbociclib ...

As Co-Chair of the APPG on Breast Cancer, I wanted to invite you to a meeting with representatives from the National Institute of Health and Care Excellence (NICE) and the Pharmaceutical Companies Roche and Pfizer, following on from the debate on Kadcyla and other breast cancer drugs. The General Manager of Roche has confirmed his attendance and so we are just waiting on Pfizer and NICE, but I wanted you to save the date as I think this will be a really important meeting.
 
The meeting will take place from 4pm to 5.30pm on Monday 6th March in Committee Room 13, House of Commons.
 
In the meeting we will discuss access to Kadcyla and Palbociclib; it is worth noting that NICE may already have published their final guidance on Kadcyla by this time. However this will also be an opportune moment to discuss the provisional rejection of Palbociclib and also consider the availability of other innovative drugs including Perjeta for metastatic breast cancer, and the NICE appraisal system.
 
If you would like to attend or have any questions, please email Breast Cancer Now, the APPG’s secretariat, on APPG@breastcancernow.org or call 020 7025 0088.

https://her2climb.com/

a trial in the US for new drug tucatinib

yet another one for NICE to reject

>.<

Morning Carolyn

I am Her2positive count me in the gang.

Dee xxxxxxxxxxxxxxxxxxxx

http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/

10 persistent cancer myths debunked

#6 and #7   there are cures but big pharma are suppressing them

sorry but this is true, or at least partially.  The price is too high, but drugs cost a lot of money to develop.

Herceptin was a game changing drug for Her2+ breast cancer but it took a court case to get it approved and funded on the NHS.

http://news.bbc.co.uk/1/hi/health/4902150.stm

"Ann Marie Rogers of Swindon, Wilts, was appealing against an earlier High Court decision upholding Swindon Primary Care Trust's refusal to fund Herceptin.

Ms Rogers, 53, had said she faced a "death sentence" without Herceptin."

Today we are still fighting to have other drugs funded. Perjeta, Kadcyla, Tykerb, Avastin, Palbociclib ... they are apparently too expensive and treat too few people for the NHS to fund them. 

If you have private healthcare you get to live a lot longer, if you have to rely on the NHS, bad luck.

the rules need to change, the current questions aren't even addressing the issues properly, the criteria are wrong, it all needs updating

I am HER2+ as well, please can I join your group?

Love Ax

Good luck, Carolyn28 

I really think NICE is the most misnamed organisation ever. 

Funding Research

it's all fine and dandy funding research to find ways to prevent, detect, treat and stop breast cancer, only for the resulting drugs to sit on the shelf out of reach because they're too expensive !!!

next time you feel the need to put your hand in your pocket to fund research ask the question

What happens when the drugs work but they're too expensive to fund on the NHS ?

Who funds the drugs if NICE won't approve them for the NHS ?  

Surely the charities need to part fund the treatments they are researching ???

http://breastcancernow.org

http://www.bcacampaign.com/bca-worldwide/united-kingdom/

https://www.breastcancercare.org.uk/

http://www.breastcanceruk.org.uk/

http://www.pinkribbonfoundation.org.uk/

https://www.againstbreastcancer.org.uk/

Hi Carolyn,

At the start of treatment my oncologist gave me stats of between 60% to 75% for recurrence so treatments that add to the  possibility of improved NED are very meaningful to me, as to you! I suppose we need to bear in mind how great an improvement there has been for the outlook of HER2+++ patients post-Herceptin and the new ones coming on stream - IF we can access them. Great idea to form a lobby group here to improve such access. 

I'm here. Thanks Carolyn xx

  is this the group you wanted to join ?

Carolyn

xx