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Drug denial

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User
Posted 16 Jan 2024 at 18:47

I was just about to get darolutamide because my PSA was going up despite being on Prostap (like Zoladex) but at the last minute the pharmacy refused it because my PSA was not quite 2.0 or above. Catch 22: if I get worse I will get  darolutamide, but if I don't get it I will get worse because I am not getting it. What appalls me is that NICE should use PSA in their cost benefit analysis. Any one else been subject to control by the NICE-pharmacy-mafia? Literally my doctor went to see the pharmacy while I was sitting there in the hospital and came back with the answer no.  

User
Posted 16 Jan 2024 at 18:47

I was just about to get darolutamide because my PSA was going up despite being on Prostap (like Zoladex) but at the last minute the pharmacy refused it because my PSA was not quite 2.0 or above. Catch 22: if I get worse I will get  darolutamide, but if I don't get it I will get worse because I am not getting it. What appalls me is that NICE should use PSA in their cost benefit analysis. Any one else been subject to control by the NICE-pharmacy-mafia? Literally my doctor went to see the pharmacy while I was sitting there in the hospital and came back with the answer no.  

User
Posted 19 Jan 2024 at 06:46

It seems that darolutamide has what is called a "base" below which it may be denied. Everything I have read says the base is PSA 2.0.  This seems to be the thin end of a long and complicated cost-benefit wedge starting with NICE "Health Technology Assessment" and ending up in strict rules for local pharmacies. And I suspect the local health Commissioners, a mysterious starsi-like outfit who speak in taxpayer tongues, have a big say. I am just a patient terrified of the cancer spreading and being denied the best drug which WHO describes as "essential". 

User
Posted 19 Jan 2024 at 11:15

The NHS says

"Chiara De Biase, Director of Support and Influencing at Prostate Cancer UK, said: “Being told you have advanced prostate cancer can be devastating, and we urgently need new treatments to help these men live longer.

“That’s why it’s fantastic that thousands of men are being given early access to darolutamide alongside traditional hormone therapy and chemotherapy, which could massively improve their survival.

“This is great news for men, and we hope that this temporary approval leads to the treatment being rolled out permanently across the UK”. ".

But apparently the cost benefit gurus have denied it to people whose PSA is just below the "base", even though PSA is one of the most accurate of bio-markers.  Cheers, Otto

User
Posted 20 Jan 2024 at 14:01

I did of course mean PSA is NOT one of the most accurate biomarkers. My point is that they should not deny a key drug because the PSA just misses the baseline, in this case PSA = 2.0. They don't tell you that it is all about some cost benefit done behind closed doors somewhere. Drug denial is a term used in private medical insurance, but the fact is that it is part of the NHS too, as I have been finding out. Another word is "triage", particularly "emergency triage", when they may have shortage of medicines or ICUs. But here there is not a "shortage" of the drug, what there seems to be is a shortage of cash.   

User
Posted 21 Jan 2024 at 14:27

They say

"Darolutamide will only be an option if tests show your prostate cancer has started to grow and is likely to spread to other parts of the body. This will usually be if your PSA level is 2 ng/ml or higher, and has doubled in the last 10 months. You may hear this described as a PSA doubling time of 10 months or less".

But what they do not say is that this is based partly on a cost-benefit analysis which is, apparently, confidential. My guess (and I am very happy to be wrong) is that the critical PSA = 2.0 value can be linked to the mysterious QALY arithmetic which involves the cash value of a human life. No wonder they want to keep in confidential.   

Otto

User
Posted 26 Jan 2024 at 14:31

Me again. One of our comrades has pointed out that Australia has cut the cost of darolutamide incredibly.

://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/new-treatment-for-advanced-prostate-cancer-added-to-the-pbs

Now in my somewhat paranoid state after they denied me I wonder if they are removing  the PSA < 2 cut off in oz or whether they are locked into the same last century QALY straightjacket like in the UK. 

Cheers, Otto

 

User
Posted 07 Apr 2024 at 17:27

I was “lucky”. They have now put me on Darolutamide. Am still stage 3 advanced, and it has pushed PSA right down. Side effects are tough, but just about manageable. I am a sort of tearful zombie for 3-4 hours every day. Interested if anyone is in a similar position. I really have to stay on it for ever or until it spreads from being local, when I then switch to chemo. One snag is that they don’t really know what the long term effect of Darolutamide is eg do I become more and more zombie-ish?  A kind of  zombie versus chemo trade off. Cheers to all, 

Otto

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User
Posted 17 Jan 2024 at 19:23

OttoC, sorry no experience,just bumping you back up the posts.

User
Posted 19 Jan 2024 at 06:46

It seems that darolutamide has what is called a "base" below which it may be denied. Everything I have read says the base is PSA 2.0.  This seems to be the thin end of a long and complicated cost-benefit wedge starting with NICE "Health Technology Assessment" and ending up in strict rules for local pharmacies. And I suspect the local health Commissioners, a mysterious starsi-like outfit who speak in taxpayer tongues, have a big say. I am just a patient terrified of the cancer spreading and being denied the best drug which WHO describes as "essential". 

User
Posted 19 Jan 2024 at 11:15

The NHS says

"Chiara De Biase, Director of Support and Influencing at Prostate Cancer UK, said: “Being told you have advanced prostate cancer can be devastating, and we urgently need new treatments to help these men live longer.

“That’s why it’s fantastic that thousands of men are being given early access to darolutamide alongside traditional hormone therapy and chemotherapy, which could massively improve their survival.

“This is great news for men, and we hope that this temporary approval leads to the treatment being rolled out permanently across the UK”. ".

But apparently the cost benefit gurus have denied it to people whose PSA is just below the "base", even though PSA is one of the most accurate of bio-markers.  Cheers, Otto

User
Posted 20 Jan 2024 at 14:01

I did of course mean PSA is NOT one of the most accurate biomarkers. My point is that they should not deny a key drug because the PSA just misses the baseline, in this case PSA = 2.0. They don't tell you that it is all about some cost benefit done behind closed doors somewhere. Drug denial is a term used in private medical insurance, but the fact is that it is part of the NHS too, as I have been finding out. Another word is "triage", particularly "emergency triage", when they may have shortage of medicines or ICUs. But here there is not a "shortage" of the drug, what there seems to be is a shortage of cash.   

User
Posted 21 Jan 2024 at 14:27

They say

"Darolutamide will only be an option if tests show your prostate cancer has started to grow and is likely to spread to other parts of the body. This will usually be if your PSA level is 2 ng/ml or higher, and has doubled in the last 10 months. You may hear this described as a PSA doubling time of 10 months or less".

But what they do not say is that this is based partly on a cost-benefit analysis which is, apparently, confidential. My guess (and I am very happy to be wrong) is that the critical PSA = 2.0 value can be linked to the mysterious QALY arithmetic which involves the cash value of a human life. No wonder they want to keep in confidential.   

Otto

User
Posted 23 Jan 2024 at 11:28

Dear Chris (?)

I forgot to thank you for bumping me up. Thanks. Will see what happens on my next appointment.

Regards, Otto

User
Posted 26 Jan 2024 at 14:31

Me again. One of our comrades has pointed out that Australia has cut the cost of darolutamide incredibly.

://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/new-treatment-for-advanced-prostate-cancer-added-to-the-pbs

Now in my somewhat paranoid state after they denied me I wonder if they are removing  the PSA < 2 cut off in oz or whether they are locked into the same last century QALY straightjacket like in the UK. 

Cheers, Otto

 

User
Posted 07 Apr 2024 at 17:27

I was “lucky”. They have now put me on Darolutamide. Am still stage 3 advanced, and it has pushed PSA right down. Side effects are tough, but just about manageable. I am a sort of tearful zombie for 3-4 hours every day. Interested if anyone is in a similar position. I really have to stay on it for ever or until it spreads from being local, when I then switch to chemo. One snag is that they don’t really know what the long term effect of Darolutamide is eg do I become more and more zombie-ish?  A kind of  zombie versus chemo trade off. Cheers to all, 

Otto

User
Posted 07 Apr 2024 at 18:21

Hi Otto,

All I can say is that when I started Prostap I was a tearful zombie for most of the day. I just could not function. I started taking sertraline(small dose) and it made a world of difference to me. I am still on it 18 months later and just had my last Prostap injection, but I intend to stay on it until this horrible ‘stuff’ is out of my system.

Good luck,

Derek

User
Posted 09 Apr 2024 at 13:02

Hi Derek,

I am happy if  the  "tearful zombie" term catches on but would not wish it on anyone.

Thanks for the sertraline tip. I will ask my consultant(s).

Cheers,

Otto

 
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