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PSMA and AXA PPP

User
Posted 09 Sep 2017 at 16:21
I recently had a robotic prostatectomy 22 nd Aug , decided to go private to save the NHS some money and I had been paying for insurance for 25 years without making a claim. Before surgery my consultant was keen to arrange a PET choline to highlight any possible spread. On 2 occasions the injection sample failed and I was sent home , however on the day before surgery a chance came up for a PSMA at the same hospital which was informative and thankfully negative.

What followed though was a wrangle with AXAPPP who informed me that 'because this test is not sanctioned by NICE they wouldn't pay', when I pointed out that we were only going that route because the Choline PET had failed, PPP then informed me that because NICE did uphold Choline PET they would indemnify up to that amount, which still left us £2K out of pocket. Confusingly enough in their terms and conditions in states that scans are covered in full ?

I have also heard of people with a BUPA policy where no such problems occurred.

I wondered whether anyone else has experienced similar problems ?

Michael.
User
Posted 10 Sep 2017 at 07:15

Thank you Dave, Chris and Lynn, much appreciated. Think I'll start gathering evidence to challenge AXA 's position, particularly as NICE have issued guidelines for the use of PSMA (March 2017 albeit they haven't yet approved the test), additionally that BUPA (in some cases at least) are accepting to pay and further that PPP 's own insurance guidelines state that they will pay for imaging PET and CT scans when referred by a specialist (surely a matter for the financial ombudsman for lack of transparency). It's going to be a busy Monday morning, I'll post how I get on. Thanks again, Michael.

Michael.
User
Posted 11 Sep 2017 at 21:49

When the cyclotron at UCLH is operational (it may be by now), they should be able to produce their own Choline marker more readily, reliably and hopefully at less cost than rushing it in from an outside source when needed as has been the case hitherto. The PSMA scan does indeed require a marker but this is produced much more easily as stated in this extract from the article I quoted, viz :- "One additional aspect of the presented 68Ga-labelled PSMA ligand is the fact that no (cost-intensive) cyclotron is needed. 68Ga can be extracted from a commercially available 68Ge/68Ga radionuclide generator. In contrast, radiolabelling choline tracers requires isotopes produced by a cyclotron (e.g. 18F or 11C)."

Due largely to the way PCa micro cells can spread often in an non concentrated way, it can be difficult to gain a true picture of cancer spread from scans, even advanced ones. In my case different hospitals took conflicting views on my choline scan. If my PSA continues to rise I will ask for a PSMA scan but doubt UCLH will give me one as I was told back in February that I had had two major treatments and no further radical treatments would be given but only HT if my PSA trend continues. However, when I contacted my RT treating hospital in Heidelberg, they told me they would give me a PSMA scan and would consider some further RT in conjunction with HT depending on results if I aagreed. So this is a possibility. I trust them to do a more reliable 68 Gallium PSMA as they afterall invented it and further RT could give my PCa another set back.

Hope they can do something effective for you Chris, you have been very unlucky in a number of respects

Edited by member 11 Sep 2017 at 21:51  | Reason: Not specified

Barry
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User
Posted 09 Sep 2017 at 20:23
I can confirm that BUPA cover PSMA PET scans.

I am having my 3rd one on Wednesday and BUPA have paid for all of them.

My BUPA cover is a company work cover so that may make a difference?

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 09 Sep 2017 at 21:30

I nearly had to pay for a PSMA PET at UCLH and was quoted roughly £1800. I was also told it was cheaper than Choline PET so I'm not sure where your insurers are getting their figures. The injections are notoriously difficult to get right for either scan. I was cancelled twice at Oxfird and twice at London leading to considerable angst and expense

User
Posted 10 Sep 2017 at 01:02

Yes but I think you were trying to negotiate to pay the NHS for a PSMA Chris; if I have remembered it right, the difficulty was that they didn't have a vehicle for charging a patient in that way. It seems that Moomack has had a private PSMA which is probably a lot more expensive. If I get time tomorrow I will dig out the invoice for John's bone scan - that was expensive enough!

Edited by member 10 Sep 2017 at 02:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Sep 2017 at 07:15

Thank you Dave, Chris and Lynn, much appreciated. Think I'll start gathering evidence to challenge AXA 's position, particularly as NICE have issued guidelines for the use of PSMA (March 2017 albeit they haven't yet approved the test), additionally that BUPA (in some cases at least) are accepting to pay and further that PPP 's own insurance guidelines state that they will pay for imaging PET and CT scans when referred by a specialist (surely a matter for the financial ombudsman for lack of transparency). It's going to be a busy Monday morning, I'll post how I get on. Thanks again, Michael.

Michael.
User
Posted 10 Sep 2017 at 19:50

If my memory serves me correctly, our member Roy had the PSMA test in Munich, albeit some time ago and I think he said the cost of the scan was about £2000. It is an easier scan to do as it does not require a cyclotron (or synchrotron) unlike the choline one which requires a marker that frequently fails to meet the required standard as I and others have experienced at UCLH. This is an interesting article comparing the two types of scan :- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3843747/

Barry
User
Posted 10 Sep 2017 at 20:09

Good article Barry. I've read a few of these and had such hope with the PSMA scan. Unfortunately I may be one of the 8% that neither scan can see :-( . One thing for sure is that my psa is doubling merrily and at a high level , and either scan was expected to see mets. The PSMA PET does require a marker !! It failed twice just as did the Choline one. Three trips to UCLH from Southampton before we got it right

User
Posted 11 Sep 2017 at 21:49

When the cyclotron at UCLH is operational (it may be by now), they should be able to produce their own Choline marker more readily, reliably and hopefully at less cost than rushing it in from an outside source when needed as has been the case hitherto. The PSMA scan does indeed require a marker but this is produced much more easily as stated in this extract from the article I quoted, viz :- "One additional aspect of the presented 68Ga-labelled PSMA ligand is the fact that no (cost-intensive) cyclotron is needed. 68Ga can be extracted from a commercially available 68Ge/68Ga radionuclide generator. In contrast, radiolabelling choline tracers requires isotopes produced by a cyclotron (e.g. 18F or 11C)."

Due largely to the way PCa micro cells can spread often in an non concentrated way, it can be difficult to gain a true picture of cancer spread from scans, even advanced ones. In my case different hospitals took conflicting views on my choline scan. If my PSA continues to rise I will ask for a PSMA scan but doubt UCLH will give me one as I was told back in February that I had had two major treatments and no further radical treatments would be given but only HT if my PSA trend continues. However, when I contacted my RT treating hospital in Heidelberg, they told me they would give me a PSMA scan and would consider some further RT in conjunction with HT depending on results if I aagreed. So this is a possibility. I trust them to do a more reliable 68 Gallium PSMA as they afterall invented it and further RT could give my PCa another set back.

Hope they can do something effective for you Chris, you have been very unlucky in a number of respects

Edited by member 11 Sep 2017 at 21:51  | Reason: Not specified

Barry
 
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