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Medicare and genetic testing

rainbowmouse Member Posts: 5
edited September 2022 in Genetic Testing

I just was assessed at the high risk breast clinic and one of the recommendations was genetic testing. I'm all for that but I can't find anywhere whether Medicare covers it or now. I'm just wondering if anyone here has experience with that situation?

Thank you!


  • alicebastable
    alicebastable Member Posts: 1,932

    I had genetic testing because I've had other cancers besides breast, and my BS referred me to their genetic counselor. If I remember correctly, Medicare covered a kind of limited testing the was specific to the cancers I'd had, rather than covering a wide swath of possible mutations for any kind of cancer. The genetic counselor was part of the hospital/clinics I went to for diagnosis, surgery, and treatment - I don't know if Medicare covers independent testing places.

  • lw422
    lw422 Member Posts: 1,372

    I think it depends on the type of cancer you have. Ask at the clinic if they can get pre-approval for the tests. I had genetic testing last year but Aetna Medicare Advantage refused to pay and I was never billed for it, either. If you have an advantage plan, contact them or check their website for details.

  • finallyoverit
    finallyoverit Member Posts: 131

    Regular Medicare (red, white, and blue card) will not pay for genetic testing unless you have been dx with cancer. Medicare Advantage (part C plans) have their own rules and each can be different. If you have one of those plans, your best bet is to call them directly with the name and CPT code of the genetic test your doc wants to order

  • alicebastable
    alicebastable Member Posts: 1,932

    Oh yes, mine is an Advantage plan. In so many things, they do what Medicare would, so I forget to mention it.

  • trilogy
    trilogy Member Posts: 9

    I had Genetic testing because I am 49% Ashkenazi Eastern European Jewish. Was all covered. Not sure if it was because of BRACA or Cancer. Have Medicare & an Advantage Plan - paid 100% (and I don't have the gene mutation)!

  • mavericksmom
    mavericksmom Member Posts: 1,038

    I had genetic testing for 54 genes in 2020. Medicare would not pay for it, I think it was $100-$150 out of pocket for me. I dion't have any defective genes!

    I highly recommend seeing a genetic counselor. Also. remember, whether you have defective genes or not, it doesn't mean you will or won't get breast cancer. I am proof of that! At the time of my testing I already had breast cancer twice in one breast, new cancers, not recurrences, and a strong family history, mother and two of three sisters. No defects, yet I was diagnosed again in August 2022 and I am having a mastectomy with reconstruction in October.

    I doubt since you are old enough to be on Medicare, that there is value in getting tested. If you haven't seen a genetic counselor, that should be a first step. Make sure your insurance will cover that before scheduling. Medicare may not pay for prophylactic mastectomy, so if you are tested and find you have defective genes, it may just cause more anxiety. I know Medicare won't pay for reconstruction unless you have breast cancer.

    Every woman is considered high risk as they age, the older one gets, the higher the risk. If I were you I would just be vigilant about getting yearly mammograms. Chances are at 65 or older and never having been diagnosed, you don't have a genetic defect. Again, your risk isn't an absolute prediction of whether or not you will be diagnose with breast cancer. BRCA positive women will normally get diagnosed before age 45-50.

    The reason I had genetic testing wasn't for me, but to know if I could have passed it on to my children.

    My cancer was caught very early all three times via mammograms so to me, having yearly mammograms with or withoutultrasound, is far more beneficial than genetic testing in older women.

  • rainbowmouse
    rainbowmouse Member Posts: 5

    Thank you everyone. I guess I should have explained my situation a little more.

    I'm 46 somewhat young for any of this. I am on Medicare because I'm disabled.

    i had an excisional biopsy in April and was referred to the high risk breast center after that. I didn't understand that I had something that was high risk so I thought I was just going there because I have dense breast and self-exams don't work well. So I was surprised to find that I have tissue in my breast that increases my risk to 1:3 in the next 25 years and 43% lifetime. I know that these numbers don't mean I'll get the cancer but it's still a lot to absorb. I'm starting alternating mammograms and MRIs every 6 months in November to catch anything that might occur early.

    I have some genetic risk because my grandmother had ovarian cancer. I've been referred to a genetic counselor but nobody has called me back so I will have to try again tomorrow.

    Thank you for sharing your experiences.

  • threetree
    threetree Member Posts: 1,149

    I would think that once you hook up with the genetic counselor they would know if you are eligible for Medicare coverage or not. I only ever looked up the coverage online (thinking of my two daughters), but the impression I got was that Medicare only covers it in very limited circumstances, but that getting it in your 40's was at least one of the criteria for Medicare coverage though.

    I got mine in my mid 60's like my paternal grandmother, but according to what I read, they think that if it's genetic, you get it at a younger age. I have yet to see a genetic counselor, but again, I would think that they would know about the coverage via Medicare in your given situation.

  • specialk
    specialk Member Posts: 9,211

    Here is some info on Medicare coverage for genetic testing. It seems that you have to be diagnosed with cancer to be eligible for coverage for testing.

    There are some commercially available testing platforms like Color Genomics, that are reasonably affordable. Your physician can order testing, or their internal physicians can place the order for you. I think it important though to have access to genetic counselors who can explain any anomalies uncovered by this type of testing.

  • K-Gobby
    K-Gobby Member Posts: 144

    I agree with the others. Check with your insurance company as they may have a company you can go to. I am being treated at the City of Hope. They are a research hospital. I was asked after a few visits if I would consent to a genetic test. I signed the papers and after a few wereks I received the result. Brca2.

    I saw the geneticist yesterday after one year. I thanked him for what they do. Without genetics. My treatment would be very different and I may have made different choices.

    Please look into a test. You have something that needs another look, and if it has a name, very often they have treatments focused on the specific cancer. Amazing. Please report back. We all want to support you.

    Kathy g.

  • rainbowmouse
    rainbowmouse Member Posts: 5

    In case anyone comes along searching for this in the future this was my experience. I met with the genetics counselor and she was concerned about a possible genetic componenet due to a heavy number of cases of cancer on my father's side, a few of which can be associated with a higher risk of breast cancer. So that qualified me for the testing. It was paid 100% by Medicare and would have only been $250 if I hadn't been covered. I wound up with a negative result on the screening, thankfully.

  • threetree
    threetree Member Posts: 1,149

    rainbowmouse - Thanks for posting this. I have a couple of cases on my father's side (and my sister) and have wondered about the genetics. What I read online was that Medicare would not pay, unless you were diagnosed something like in your 40's or younger. I was 66. I have two daughters and I'd like to let them know if there is anything genetic, but it was my understanding that Medicare would not pay in my case, and that if I paid out of pocket it could run close to $1000.00, so I have been hesitant. I was also thinking that if the genetic cases get diagnosed in one's 40's and mine wasn't, then maybe my daughters don't have any higher than normal risk. My sister was diagnosed in her early 40's and has been fine for 20 years, as it was caught early. She "claims" to have gotten the genetic test and said there was nothing there, but she has some serious problems with the truth and will often say things for attention, so I have to eliminate anything she has said about the situation, unfortunately.

    Do you know if just a consult with the genetic counselor is covered by Medicare? Maybe the genetic counselor could give me more info on both the likelihood of a family genetic possibility and whether Medicare would cover in my case. They do have a genetic counselor at the center I go to. I am very concerned for my daughters, as one turned 40 last year, and the other is 39 this week-end. Thanks so much!

  • alicebastable
    alicebastable Member Posts: 1,932

    rainbowmouse, my screening was negative. My dad had kidney cancer and skin cancers. His sister had breast cancer. My mom had breast cancer. Her mother had uterine cancer. I have had ALL of these cancers. Just because the genetics say there's no connections doesn't mean you are in the clear. Stay vigilant and continue with mammograms and other screening.