Arguing with Insurance!

[chefjlu]

Just ended my 2 years on ADT in late May 2024. My PSA has remained undetectable and just had a blood test (Sept 5) showing all but a couple of blood levels back to normal. Those levels are just off the mark. My doctors have been trying to get approval for a new PSMA scan and of course there is always an argument. So interesting how insurance is in contact over everything up until the point you really need something. I'm doing well except for the stress this causes. It really can take a bit of a toll on you.

[mrscruffy]

My insurance allows one a year. Got declined for one at 6 month mark. MO ordered other scans and they came back great

[fireandice123 in reply to mrscruffy]

For my first PSMA scan Blue Cross required that my PSA be 1 or higher and I had to have bone and CT scans (again). I had already been diagnosed with metastatic PCa. My MO couldn’t figure out why required the additional scans but I had them to be able to get the PSMA scan.

[mrscruffy in reply to fireandice123]

weird

[muttonman]

call and tell whoever answers the phone that your death is in there hands.

[MoonRocket]

PSMA scans are approved for newly diagnosed and recurrent men. Outside of that, I'm not sure what other situations warrant a PSMA scans. Even now clinical trials are based on bone and ct scans, so the insurance approves those readily.

[maley2711]

Mu understanding is that at negligible PSA levels, a PSMA PET has low sensitivity?

[Justfor_ in reply to maley2711]

Wrong. You are confusing sensitivity, which has no correlation with PSA, with detectability that is indirectly related with PSA under the debatable assumption that PSA expressing cells do equally so with PSMA. It has been proven and practiced, at least in Europe, that starting Enzalutamide a couple of weeks before scanning improves PSMA expression and consequently detectability. Yet, at the same time the PSA will decline. So, PSA and PSMA follow each other in broad lines, but don't swear to it.

[maley2711 in reply to Justfor_]

Yes re detection. There are not studies that show detection is low at very low PSAs.? So, does that mean that PSMA scans miss existing metastasis when PSA is very low, or simply that low PSA correlates to very few metastases , and the hgher the PSA, the more metastatses there are to be detected?

[Justfor_ in reply to maley2711]

PThis imaging is PSA, PSMA, metastasis, etc, agnostic. It has rows of rings of discrete detectors positioned 360 degrees round the axis that will send an electric pulse above a threshold when photons emitted by the isotope used hit a detector. First thing to understand is that detection relates to overcoming the individual detector's threshold. Second thing to understand is that isotopes shoot photons at random in a spherical distribution so they land at random detectors. A detection is only obtained when a huge number of photon emmiting isotopes are colocated and in spite of directional randomness there will be at least one diametrically positioned pair saturated with photons that will breach the threshold and produce an electric signal for further processing. This is the sensitivity of the test. The other thing that ignorant people say regarding the dimensions of tumors is only good for the dogs. Sqeeze the necessary number of isotopes into a fraction of a millimeter and they will be detected.

[street-air]

psma scans should not be paid for by insurance unless there is recurrence. You have zero psa so where is the recurrence?

[maley2711 in reply to street-air]

And the question is also...with RT +ADT, at what PSA point do we conclude there is recurrence? My RO agreed that this is up for debate!! Until we have nadir PSA +2 ?????

[chefjlu in reply to street-air]

Even with undetectable PSA cancer can spread and grow. The purpose of the scan is to fully determine a baseline and to determine effectiveness of the RT & ADT. My PSA levels have never been what would be "high", and response to treatment has been extremely quick with Gleason 9. My doctors have discussed my case with a large Cancer treatment center and there is some thought that I may have totally eradicated the cancer.

[street-air in reply to chefjlu]

You didnt have a baseline psma scan before first line treatment? Yes sure low psa cancers can grow - not zero btw - but all I am saying is pet scan cancer detection efficacy is so highly correlated with psa that no insurance company will waste money when there is no cancer detected by other tests yet.

[chefjlu in reply to street-air]

Yes I had a PSMA before salvage radiation.

[85236442968]

Chefjlu

Based on your profile you should be on Medicare or at least Medicare eligible.

Medicare signup time for 2025 is coming up. It is time t o reevaluate your coverage.

While they are more expensive the Supplements (I prefer plan G) may be a preferred way for you to go due to your PCa

Even if you are still working and are on a Company Insurance plan, I would think forgoing it and not putting in your portion of the premium, (probably deducted from your pay so you really do not see it) and getting into Medicare.

Do not let the commercials on TV cause you to accept a substandard policy due to cost. do the research and I do think you will find the Supplement G to be the one for you.

[chefjlu in reply to 85236442968]

Yes, I am on Medicare and I am looking at switching to Supplement over an Advantage plan.

[swwags in reply to chefjlu]

doesn't that require underwriting?

[chefjlu in reply to swwags]

Not in NY, when open enrollment comes you can move without it and no payment difference from anyone else.

[chefjlu]

Part of my question is more of frustration. I know of men younger, who have been diagnosed who have been denied PSMA scans. My frustration is that insurance companies do not always follow SOC and in some cases, refuse treatment processes without regard to patient. Overall, I have been fortunate and only had to appeal 1 past decision, which was ruled in my favor. We all need to be our own best advocate, as well as to put pressure on the right people to see the changes needed to deal with any health issue.

[Spinel_Cutter]

I had my first about 6 weeks ago. Oddly, my co-pay was $2,950 because the entity was not in-network. This was weird because they had previously done my multi-p MRI and that was in-network. Additionally, I asked on the phone about in-network and was told: "we obtained authorization from your insurance, so everything looks ok." Now it's "it was up to you to confirm with your united medicare advantage." I'm arguing that they were not in compliance with the Surprise Billing act of 2022, nor required "form," nothing on their website and no required notice prominently placed at the scan site. Time will tell.

United had told me that they covered PSMA-pet scans on the phone but that there "was a 2 in a lifetime cap." Should I ever get denied I'll hop a plane and fly to Mumbai, India. PSMA-pet w/ the pluofast whatever tracer costs about $500 in total. My "bill" was supposedly $28,000.

Ok...$28,000 in America, $500 in India. Hmm...well Orgovyx is $2,980/month in USA (but I "only" pay $850 per month, but in India, it's about $85/month.

I agree, the stress of doing battle is worse than the cancer.

Note: Supposedly starting Jan 1 max Schedule D drugs = $2,000 out-of-pocket. Therefore I'll pay for two months of Orgovyx + abi and cap out in February. That's good, if it happens.

[bean1008 in reply to Spinel_Cutter]

That’s crazy! Let’s build a luxury compound in India for us all to stay at during treatment!

[chefjlu in reply to Spinel_Cutter]

It does get crazy. I was lucky with Abi as my pharmacy got me into a program where it was free for me. On Cost Plus, Abi is only about 100 a month for those not covered in insurance. Orgovyx was ineffective for me so I did Lupron every 6 months and insurance covered if after deduc title of 250.

[bean1008]

After three years of ADT and 2 1/2 years of being undetectable I asked my oncologist if we could do a PSMA and she said absolutely! I had no issues with insurance covering it. The results were that they did not see any of the three previous lesions seen in a prior PSMA. That’s when I started on the Lupron and Zytiga. I’m so glad I had the new scan last February and we will continue to monitor using PSA and future scans if needed.

Over the last seven years I have had three PSMA scans and they were all incredibly helpful in determining my treatment plan. The first two in 2017 and 2020 i had to pay for as they were not yet covered by insurance. Thankfully UCLA and UCSF were both doing clinical trials so the cost out of pocket was about $3000 each. I know not everybody had that ability at the time but I considered it money well spent. Probably saved my life.

[TJGuy]

Ok so I read comments and your question.Let see if I can provide answers.

I had many many PSMA scans over the years and multiple during a single year.

So yes it's unlikely you'll find PC at " non detectable" <0.1 levels.

Yes I've been told PSA needs to at least 1.0 for a PSMA scan.

I've been denied multiple times because my doctor doesn't do peer to peer so I go immediately to a doctor that will and get approved immediately. I've then had the PSMA scan with the new doctor, submitted it to the main doctor who then gets approval for a PSMA scan at their hospital. So the insurance paid for two, instead of one yup.

I have been approved after appeal on denial for a PSMA scan after 2 years on Lupron to see ,"if my PC puts out PSA at low levels" which around 8 percent of PC will btw. But I had to argue that in my appeal.

Your ability to find a hit on a PSMA scan will depend on how aggressive your cancer is and how spread it is. Think of very aggressive as like white silica sand, and brown sand as normal.

So I explain it like this. You've got a child's bucket like they play with at the beach. A full bucket of sand represents 1.0 PSA.

So let's say your detector is your eyes, maybe a paid of binoculars.

Let's say your body is a field of grass.

So let's say you've got a spread of cancer that is like sand being finely broadcasted by a lawn spreader. It's finely spread in the grass.

Looking out over the grass these single grains of grass are not visible. Your "scan" produce no positive results but you have a PSA.

Now say you go out in the grass and dump that whole bucket in one place (one occurrence of PC)

You might easily see that on your scan even if you poured less than that full bucket, say half a bucket you might still see it.

But if you pour 4 or 5 or more piles of sand from that bucket you might or might not see one or any of them. There just wasn't enough sand in any pile to be visible.

So scans work like this, the more metastases you have the higher your PSA might need to be to make any of them visible to your scan.

Consequently the fewer the lower your PSA may need to be to find them.

I had 5 metastases at one time and weren't found until my PSA was 3.8

I've had 1 and it was easily found at 0.8

So this is without a prostate, if you have a prostate it will put out PSA.

If you have a prostate and your PSA is super high like 60 just picking a number. Nearly all of the PC and PSA can still be in the prostate and just a little escaped. If that prostate is removed then your working with only what escaped the prostate.

Ok so you want to stay far far away from any advantage plans with Medicare. It's a one way trip once on advantage plans always on advantage plans. Unless a state passes laws saying otherwise.

Hope this helps.

[TJGuy in reply to TJGuy]

Oh by the way prices of PSMA scans in the US very to extreme amounts. One hospital charges $38,000 another $22,000 another $16,000.

These are places I go to, the UCLA trial was $2800.

There is a place near Vancouver BC that gives Foreigners like US a scan for around $2,500 US dollars.

[j-o-h-n]

Okay now that you've teased us............ what is your "pièce de résistance" meal for us..

Good Luck, Good Health and Good Humor.

j-o-h-n

[BumblingButBrave]

Ive had success using chatgpt. Paste your insurance policy, medical history, denial letter into chatgpt. Tell it to act as an attorney and medical care activist to find ways to get your scan covered by the insurance company. Then tell it to write a persuasive letter to the insurance company with the goal of getting the scan covered. Good luck.