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Our insurance covers Keytruda

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Prostate Cancer
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Posted 8/11/2017 12:46 PM (GMT 0)
Hi!

I'm posting as a separate topic since there is great interest on this forum about whether insurance in general approves new fantastically expensive FDA approved treatments.

Recap: Keytruda was FDA approved recently (May?) for all solid tumors showing an (uncommon) DNA mismatch repair defect/MSI-H. It's an infusion that costs approximately $150,000/year. My DH lucked out, his cancer tested positive for this genetic signature when Xtandi was failing. His PSA was undetectable at last test after three infusions and he continues to feel better (except for the darn Lupron SEs).

Our insurance (Highmark Blue Cross Blue Shield, in PA) initially denied the claim. We took the advice of our doctor, and went ahead anyway - Dave said he bought a Bentley every time he got an infusion, and he was building up a fleet. (The cost of the drug is about $12K per infusion but the hospital marked it up by a factor of 4.)

So relieved to see this morning that our insurance has approved the claim now. After all, it wasn't the doctor who was going to be responsible for the charges. Dave was very reluctant to go ahead without insurance approval, but his disease was showing signs of progressing rapidly (PSA and scans). Of course I was on the doctors side and we talked him into it.

I think it could easily have gone the other way.

-- Carolyn
Posted 8/11/2017 1:13 PM (GMT 0)
" Keytruda was FDA approved recently (May?) for all solid tumors showing an (uncommon) DNA mismatch repair defect/MSI-H."

Makes you wonder how many, what percentage, of stage 4 prostate cancer victims have this mis-match?

But it sure seems to be working for you !

The cost and getting insurance to cover it is an issue all its own..
Posted 8/11/2017 2:35 PM (GMT 0)
Great news on the insurance. Now you can sleep better.

Fairwind, the information I have seen estimates it is 5% or less of the resistant metastatic cases, but it really isn't known until testing for it becomes more significant. So that is a pretty small population of PCa patients. With the other cancers that Keytruda is used for it is also a very small number. In 2016 they reported about 16,000 were treated with Keytruda. That is expected to increase with the broader FDA label, but I haven't seen any good estimates.
Posted 8/11/2017 2:59 PM (GMT 0)
The estimates I've seen are in the 5% range too. But I also think we don't really know. The mutation only needs to be in the cancer (not necessarily in the rest of the man). How many advanced well treated (including ADT3) prostate cancers have biopsies which have been tested?

Not enough for big data, I would guess. There is evidence that for specific aggressive types the rate is much higher (ductal).

Dave's doc (Dr. Zibelman, MO at Fox Chase Cancer Center near Philadelphia, bless him down to his toes) said he tested Dave because he was young(ish) AND had aggressive cancer which was progressing on Xtandi. And he just had a biopsy of lymph node (neck, which had been done to confirm PC there) so the material was there to test.

When I asked why the doc had submitted the genetic test, the way he answered made it sound like it was a no brainer for him, I have to say. But I think he also wanted to keep me from expressing excessive gratitude or crying at his feet or something.

He was pleased as punch, though.

-- Carolyn
Posted 8/11/2017 3:44 PM (GMT 0)
Carolyn, This is such great news! Here's hoping that Dave continues to respond well to it! Sue
Posted 8/11/2017 4:52 PM (GMT 0)
Wonderful news Carolyn! Many hope that it can keep Dave's PSA and the tumor under control for a very long time. You are forging the way for the other fortunate few, but every success against PCa is welcome news!
Beth
Posted 8/11/2017 5:31 PM (GMT 0)

Hello CSPIVAK,

This is great news ...

Every step forward for one person, represents a step forward for many --- now, and down the road.

You are blazing a trail ... for other's to follow ... by pursing this treatment, pursuing insurance coverage, and by sharing your experiences with others.

Keep us posted!

Thankful to hear your update,
"Cyclone" ~ Iowa State University
Posted 8/11/2017 7:06 PM (GMT 0)
Hi all,
Do any of you know if a previously radiated (SBRT) lesion can be successfully genetically tested? My husband is scheduled for a laminectomy at L5 in a few weeks and the neurosurgeon said he would also remove the PCa lesion nearby while he was in there. I would love to have it tested (DH did the color.com spit test and he is positive for the CHEK2 mutation) however would the SBRT have made it not test worthy?
Joanne
Posted 8/11/2017 7:34 PM (GMT 0)
Great to hear it was covered and that Dave is continuing to respond so well, and without significant SEs. It's a good lesson too about perseverance with insurance companies. I swear that they give some clerk a "rejected" stamp that he routinely uses on every new request. I think that they depend on patients not challenging it. And a fourfold markup from the hospital! It's enough to turn me into a communist in spite of my capitalist indoctrination (I have an MBA from Columbia B-school).
Posted 8/11/2017 10:13 PM (GMT 0)
Hey JoJoLA

I don't know and you should talk to your doctor.

But, maybe the answer is yes, it's ok, because this:

"Tissue that has been previously irradiated can be biopsied without significant excess risk." In here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3632075/

It's not about your question directly but about whether it's ethical to do biopsies purely for research including gene expression etc. . But if irradiated tissue were worthless for biopsies for genetic testing, it seems like they would have phrased this differently.

I read somewhere that it's tricky doing genetic testing on bone mets, but the outfit that did Dave's testing (Caris Molecular Intelligence) does have instructions about bone tissue on their web site.

Let us know what you find out!

Regards
-- Carolyn
Posted 8/12/2017 3:19 AM (GMT 0)
Thank you Carolyn,
I will check it out further. Also, TA gave me some resources to investigate.
Joanne
Posted 8/17/2017 1:20 AM (GMT 0)
Carolyn, that is excellent news, both the response and the insurance.

Good for your MO at FCCC. I wouldn't be alive today if it weren't for the support I have received from Fox Chase.
Posted 8/17/2017 4:18 AM (GMT 0)
Carolyn,
At Tall Allen's suggestion I called Caris Molecular Intelligence and they said that they COULD obtain the genetic material from previously irradiated tissue. Today I asked DH's MO and he confirmed that the genetic material was readable even if damaged by the radiation. So this is good news and I will make sure the neurosurgeon doing DH's laminectomy and removing the adjacent PCa lesion saves it for testing.
Joanne
Posted 8/17/2017 1:57 PM (GMT 0)
Hi Joanne

Very interesting answer to a great question - thanks for posting! If you do get the testing done, make the doctor give you a copy of the report. Even if it doesn't help, (which I certainly hope it does!!!!), reading the detailed report will boost your Science Nerd score by about 1000.
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