PV - need medical codes for allele burden test - MPN Voice

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PV - need medical codes for allele burden test

FlannelPJs profile image
10 Replies

I have polycythemia vera and have been on hydroxyurea since November 2023. My doctor has finally agreed to prescribe Besemri but, I have asked him to first authorize the allele burden test (I am JAK2 positive and think it would be helpful to have a baseline percentage). His nurse has been unable to find the code needed to order it so my insurance Medicare will cover the cost. Does anyone happen to have that information that I can share with her? My doctor is not an MPN specialist and there are none in the state.. If there is an additional code to determine the type, whether homogeneous or heterogeneous, I would appreciate that code, also. I suppose it is possible that Medicare will not cover it and I may have to pay out-of-pocket.

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FlannelPJs profile image
FlannelPJs
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hunter5582 profile image
hunter5582

It depends on which test you use. This is the test I use for quantitative analysis.

JAK2V617F Mutation Analysis, Quantitative TEST: 481020 Test number copied CPT: 81270

labcorp.com/tests/481020/i-...

You can access the information from the menu at whichever lab you choose to use.

FlannelPJs profile image
FlannelPJs in reply to hunter5582

Do you know if there is a test that can tell whether the type you have is homozygous or heterozygous?

hunter5582 profile image
hunter5582 in reply to FlannelPJs

The test I use does not show homozygous/heterozygous. Suggest you contact the lab to find out what is available.

FlannelPJs profile image
FlannelPJs in reply to hunter5582

Thank you!

EPguy profile image
EPguy in reply to FlannelPJs

Zygousity is not a standard test, from my knowledge it's mostly used in research. This new report is one such example. It concerns the pre-MPN state of "CHIP" where the mutation is present but MPN disease has not presented. They make an argument that Zygousity has prognostic value and:

"future prognostication systems should take mutation 'zygosity’ into account."

nature.com/articles/s41408-...

Generally higher VAF% is more likely to be homozy since here are two mutations in each gene pair which gives a higher concentration of alleles.

It seems to be not difficult to test for from what I find.

FlannelPJs profile image
FlannelPJs in reply to EPguy

Thank you. Very helpful

monarch5000 profile image
monarch5000

I'd suggest forgetting about the Jak2 test and go straight for the Gold Standard - the Tempus Next Generation Sequencing blood Xm test which will screen for 648 mutations and tell you their allele burden percentages, including Jak2. By filling out this financial assistance form tempus.com/patients/oncology/, you may find the test is free or will cost no more than $100.

The test will tell you about other primary and secondary mutations you may have, besides Jak2, that are likely to impact your long term prognosis and drug treatment choices. Example: you might have secondary mutations that suggest an aggressive disease course towards myelofibrosis or a predisposition to developing MPN/MDS cross over disease or acute myeloid leukemia. Or might so you have no seriously adverse secondary mutations.

FlannelPJs profile image
FlannelPJs in reply to monarch5000

Very helpful information. Thank you so much.

Imkerin profile image
Imkerin

Thanks for posting this query and hope you can progress things at your end.

I would be very interested to hear from anyone in the UK who knows where, as individuals we can access (and pay) for the equivalent tests. My specialist MPN team has the view that there is no value in a quantitative analysis so doesn't commission them.

Meatloaf9 profile image
Meatloaf9

I had a Jak2 test this past December. It was sent from my local hospital to Quest Labs in Virginia. It was covered by Medicare 100%, they billed Medicare 270.00. Do not take this as a guarantee that it will be covered. Probably the only way to know would be to call the billing office for the Lab that will be running the test, they should be able to tell you the cost of the test as well as if Medicare usually covers the cost. This was my 4th Jak2 test and they have all been covered 100% by Medicare. Please do your own research, past payments are no guarantee of future payments, I think. Best to you.

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