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Urgent - Are you on abiraterone pre-chemo through Cancer Drugs Fund?

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User
Posted 14 Aug 2014 at 14:21

Hi all,

 

This is an urgent request from Mary in our Press Office. If you're getting abiraterone, pre-chemotherapy, or have had it in the past, we'd really like to speak with you right away about about possibly telling your story in the media.

 

You can call Mary at 0203 310 7101 or email pressoffice@prostatecanceruk.org.

 

 

User
Posted 16 Aug 2014 at 10:06

A PCUK INITIATIVE?

 

Maybe I'm being too simplistic, but......

 

In view of the alarming prospect of men being denied abiraterone unless it's for 'end of life' care, a decision so many experts feel is ridiculous, and when Owen Sharp (CEO of this charity) expressed his views so well on TV yesterday, can the PCUK take the initiative here?

This is a charity with a healthy income and tremendous assets, and I wondered if there is a way that PCUK could actually set up a fund specifically to help our advanced PCa guys  who will be denied the gift of extended life when drugs such as abiraterone are denied.

 

Over the years, many millions of pounds have been donated to the charity by people wanting only the best for PCa patients, and by families mourning the loss of a loved one and hoping that in future more men will be given the chance to survive for longer.

 

What with this abiraterone crisis, and the scandal of Enzalutamide being denied to patients in Northern Ireland, it would be tremendous if such a big, well respected charity like PCUK could step in and give that gift of life.

 

I suspect many of us may be feeling the same about this when the biggest  fundraiser of the year (MOVEMBER) begins in a few months time.

 

Surely there is some way that PCUK could take this idea forward.

 

Can anyone please add suggestions here, or explain why this might not be possible.

 

 

George

B2PCa
User
Posted 16 Aug 2014 at 11:53
I am just coming to the end of 18 months of Abiraterone treatment. Psa was kept in single figures until recently, no pain and quality of life was great. Psa rising fast now so Abiraterone is lost it's effectiveness. I am one of the lucky ones to have been allowed to be treated with Abiraterone. Had been treated previously with Doxetaxal and Cabitaxol so I would have been eligible for post Chemo treatment of Abiraterone, but it is not right that this is a criteria for being prescribed this drug. Consultants should be allowed to make the judgement NOT some faceless penny pinching group. As you all know you go from one treatment to the next so to slow down the advance of this pernicious cancer, a bit like jumping from one stepping stone to the next, always hoping a new stepping stone will appear. Trouble is they appear briefly and then are removed by the shower called (not) NICE. My next stepping stone was to be Enzalutamide, now I don't have the opportunity. There is also Radium 223 but not available to us. Why oh why are we donating to Cancer research if, when new life enhancing drugs are discovered, they are banned?

Makes you think. Prisoners can cite Human Rights to vote and be represented by the taxpayer. Foreign Criminals can also claim the same so to stay in this country. Well what about OUR Human Rights to live a pain free full life span if medication is available to allow this. WE have paid all our lives into National Insurance and Taxes to fund the National Health. Somebody should take (not) NICE to the Human Rights Court so to claim the right to be treated. I would if I knew how to go about it. RANT OVER

User
Posted 16 Aug 2014 at 16:25

Well said - totally agree. I am in the same position but not living in England makes it much worse as I have no access to the CDF for England (which currently offers Radium 223 by the way) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. I also agree with George that PCUK needs to do a lot more with its resources at the coal face i.e on the men who are dying of this insidious disease. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Nil desperandum

Allister

User
Posted 15 Aug 2014 at 13:29
Just finished my interview. It should be on ITV lunchtime news, C5 early evening news plus possibly ITV evening news.
User
Posted 15 Aug 2014 at 23:37
Hi Kevin,

You did a great job on those interviews.

I managed to see you on Channel 4 and on 5 News.

Excellent work!

Let's all pray that the disgraceful decision about pre-chemo abiraterone will be overturned.

Well done Kev,

George

B2PCa
User
Posted 17 Aug 2014 at 11:07
How about MASSIVE ongoing campaign by the PCUK till we see a change of hearts and minds in HM Government and NICE?

Edited by member 17 Aug 2014 at 19:49  | Reason: Not specified

B2PCa
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User
Posted 14 Aug 2014 at 15:14
I am on Abiraterone at the moment and have been for 18 months. Unfortunately PSA is now rising rapidly and Abiraterone treatment is coming to an end. Had Doxitaxal and Cabitaxal, oncologist considering another round of Cabitaxal.
User
Posted 15 Aug 2014 at 13:29
Just finished my interview. It should be on ITV lunchtime news, C5 early evening news plus possibly ITV evening news.
User
Posted 15 Aug 2014 at 17:26
Channel 4 have just finished. Should be on at 7pm
User
Posted 15 Aug 2014 at 23:37
Hi Kevin,

You did a great job on those interviews.

I managed to see you on Channel 4 and on 5 News.

Excellent work!

Let's all pray that the disgraceful decision about pre-chemo abiraterone will be overturned.

Well done Kev,

George

B2PCa
User
Posted 16 Aug 2014 at 10:06

A PCUK INITIATIVE?

 

Maybe I'm being too simplistic, but......

 

In view of the alarming prospect of men being denied abiraterone unless it's for 'end of life' care, a decision so many experts feel is ridiculous, and when Owen Sharp (CEO of this charity) expressed his views so well on TV yesterday, can the PCUK take the initiative here?

This is a charity with a healthy income and tremendous assets, and I wondered if there is a way that PCUK could actually set up a fund specifically to help our advanced PCa guys  who will be denied the gift of extended life when drugs such as abiraterone are denied.

 

Over the years, many millions of pounds have been donated to the charity by people wanting only the best for PCa patients, and by families mourning the loss of a loved one and hoping that in future more men will be given the chance to survive for longer.

 

What with this abiraterone crisis, and the scandal of Enzalutamide being denied to patients in Northern Ireland, it would be tremendous if such a big, well respected charity like PCUK could step in and give that gift of life.

 

I suspect many of us may be feeling the same about this when the biggest  fundraiser of the year (MOVEMBER) begins in a few months time.

 

Surely there is some way that PCUK could take this idea forward.

 

Can anyone please add suggestions here, or explain why this might not be possible.

 

 

George

B2PCa
User
Posted 16 Aug 2014 at 11:18

Originally Posted by: Online Community Member
Channel 4 have just finished. Should be on at 7pm

 

I saw it too Kevin. It (and you of course!)   http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif   were very good. Very positive report.

Hope it all helps anyway.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Aug 2014 at 11:53
I am just coming to the end of 18 months of Abiraterone treatment. Psa was kept in single figures until recently, no pain and quality of life was great. Psa rising fast now so Abiraterone is lost it's effectiveness. I am one of the lucky ones to have been allowed to be treated with Abiraterone. Had been treated previously with Doxetaxal and Cabitaxol so I would have been eligible for post Chemo treatment of Abiraterone, but it is not right that this is a criteria for being prescribed this drug. Consultants should be allowed to make the judgement NOT some faceless penny pinching group. As you all know you go from one treatment to the next so to slow down the advance of this pernicious cancer, a bit like jumping from one stepping stone to the next, always hoping a new stepping stone will appear. Trouble is they appear briefly and then are removed by the shower called (not) NICE. My next stepping stone was to be Enzalutamide, now I don't have the opportunity. There is also Radium 223 but not available to us. Why oh why are we donating to Cancer research if, when new life enhancing drugs are discovered, they are banned?

Makes you think. Prisoners can cite Human Rights to vote and be represented by the taxpayer. Foreign Criminals can also claim the same so to stay in this country. Well what about OUR Human Rights to live a pain free full life span if medication is available to allow this. WE have paid all our lives into National Insurance and Taxes to fund the National Health. Somebody should take (not) NICE to the Human Rights Court so to claim the right to be treated. I would if I knew how to go about it. RANT OVER

User
Posted 16 Aug 2014 at 16:25

Well said - totally agree. I am in the same position but not living in England makes it much worse as I have no access to the CDF for England (which currently offers Radium 223 by the way) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. I also agree with George that PCUK needs to do a lot more with its resources at the coal face i.e on the men who are dying of this insidious disease. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Nil desperandum

Allister

User
Posted 17 Aug 2014 at 11:07
How about MASSIVE ongoing campaign by the PCUK till we see a change of hearts and minds in HM Government and NICE?

Edited by member 17 Aug 2014 at 19:49  | Reason: Not specified

B2PCa
User
Posted 17 Aug 2014 at 14:53
I'm furious about this new ruling, this was our expected next step and now all we have to look forward to is chemotherapy. Why would anyone want that above Abiraterone?

It's madness.

Allison

Edited by member 17 Aug 2014 at 14:54  | Reason: Not specified

User
Posted 18 Aug 2014 at 22:28
We will watch with great interest for more on NICE and drug company Jansen on the NEWS & VIEWS section of this site.

What puzzles me about the issue is this:

Abiraterone lay forgotten 'at the back of the shelves' for many years (it's been around since about 1993), so how can Janssen justify such an exorbitant charge for this drug?

George

B2PCa
User
Posted 19 Aug 2014 at 08:57

That's interesting George,

I assumed that as it is fairly new to the PCa scene it was hot out of the test tube.

So the development costs have been recovered in the general turnover through the years.

We tend to work on a three year recovery window, would assume that Jansen would be similar.

 

Fully understand putting a premium on it to cover newer research but it sounds like they have room to wriggle the price a bit then.

 

Kevin

User
Posted 20 Aug 2014 at 10:38
Hi all,

Thank you for your thoughts on abiraterone and the terrible situation with Janssen and NICE. Our Policy & Strategy team is looking at this and will be able to respond to you soon.

Best,

Sadie

User
Posted 21 Aug 2014 at 11:38
Sadie What about enzalutamide being banned by NHS England if you have had treatment with abiraterone. I am one of the few men caught in this situation. This is morally wrong. I have written to my MP asking for assistance in getting this ruling reversed, but I am not holding my breath.
User
Posted 21 Aug 2014 at 16:33

Hi all – this message is from our Drew Lindon, our Head of Policy and Campaigns.

---

We’re working to change both this decision on abiraterone, as well as improve the overall drug appraisal system, which simply doesn’t work. We are considering how we can change the system, and that might involve Prostate Cancer UK and other charities pooling their resources in the future.  However, there’s two issues with us funding access to drugs. 

You might have guessed the first reason. Given the massive cost of drugs like abiraterone, we don’t have the money to fairly, or sustainably fund men to have access.

Secondly, there is a principle here: this is a drug we think the NHS should be funding.  The drug works, and has been approved on the NHS for men who have had chemotherapy.  We would be wrong to let the NHS off the hook.  Indeed, if we start plugging holes in the NHS drug budget, we will never be able to stop. 

As it stands, men in England have the right to apply, via their cancer specialists, to funding for the Cancer Drugs Fund.  So we think the best approach is to try to change NICE’s stance, so that men can access this on the NHS in England, Wales and NI.  Scotland has a separate system, and the Scottish Medicines Consortium will be considering abiraterone pre-chemo later this year.  And you better believe we’ll be there making the case too.

 

 
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