Insurance and Genetic Testing Companies-Help!

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gracegirl95
gracegirl95 Member Posts: 1
edited February 2017 in High Risk for Breast Cancer

Hello All,

I was hoping, if anyone feels comfortable sharing, to learn some more about the different options for preventative genetic testing. More specifically, what companies have people worked with (Myriad, InVitae, Color Genomics, Ambry, etc...), why you or your physician chose that company, and whether your insurance covered the costs or you had to pay out of pocket. Vague or detailed information is appreciated!


Thanks!

Comments

  • Lisey
    Lisey Member Posts: 1,053
    edited February 2017

    Grace, most insurance will cover genetic testing to see if you predisposed to cancer if you meet the criteria (family diagnosis and your age). I was tested because I'm 41 at diagnosis. So the BRCA and the list of genetics tests are typically covered. Your insurance will determine which lab to work with.

    If you don't qualify for covered genetic testing, I suggest using a FDA lab certified such as Kailos Genetics. They do breast genetic testing (BRCA, BRCA2, etc) for $225. https://www.kailosgenetics.com/cancer-screening I highly recommend Kailos. I got my full pharmacological pathways genetics test done (called the KailosPGX complete) for $149 (they've since raised their prices I believe) and it has come in extremely handy for numerous medications and seeing where my mutations make me more susceptable to errant Estrogen.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2017

    Depending on your insurer you may have to make a case for genetic testing - it's not automatically approved. Your insurance will also dictate which company does your testing, unless you choose to pay for it yourself. Your insurer may also approve only certain tests, i.e., BRCA 1/2 but not extended panel testing.

    My insurer used Myriad for my panel testing and they (Myriad) were very helpful when I had a question. Testing took a little while but not too long - maybe a month? (I don't quite recall, as there were delays in authorization.)

    I know people who've used Color Genomics, dealing directly with the company, and been very satisfied but they do tend to get backlogged, so factor that into your planning.

    I don't see that Kailos lists the additional HBOC genes that they check for; I'd definitely want that info before testing.

  • Lisey
    Lisey Member Posts: 1,053
    edited February 2017

    Hi Hopeful, as an FWIW, Kailos' $225 test does more than just BRCA1 and 2. They test 23 different genetic markers. I agree their website doesn't list them, but I called an they said they would email me the full list.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2017

    I had two panels done separately, 6 months apart (same year) and insurance paid for both in full. My genetic counselor used Ambry Genetics and they had a pretty quick turnaround, like 3 weeks. From what I understand, it's usually approved if you have a close male relative with breast cancer or two+ close female relatives with breast cancer, and of course if there is a known gene in the family. When I did my testing, we knew about my brother's breast cancer, but I really didn't have much family history other than my grandma and one first cousin out of many cousins. And no one was tested. I was the trailblazer!

  • Denise-G
    Denise-G Member Posts: 1,777
    edited February 2017

    My genetics team at Univ of Michigan went through Ambry Lab for myself, my mom and sister (all breast cancer patients

    at the time). My sister had the best insurance - so they checked her for a lot of genes. She had Chek 2. Next my mom who

    had Medicare which doesn't pay. They only charged her $250.00 Then me - they checked for Chek 2 which I have.

    I have huge deductibles and I was charged about $200.00

  • rainnyc
    rainnyc Member Posts: 1,289
    edited February 2017

    My insurance paid for BRCA testing due to the fact that we're Askenazi Jews, who have this gene in higher numbers than the norm. I don't have any close relatives with breast cancer, so I couldn't get them to pay for other genetic testing, though.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2017

    "... as an FWIW, Kailos' $225 test does more than just BRCA1 and 2. They test 23 different genetic markers. I agree their website doesn't list them, but I called an they said they would email me the full list."

    Yes, I am well aware that Kailos' test covers more than just BRCA1/2. They refer to testing a number of additional genes but that information is not readily available. It's great that they'll email a list but that info should be easily located on the web site.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited February 2017

    Your genetic counselor (not physician) is the best informed person and should be making the decision on which company to use, in conjunction with insurance coverage. Mine chose Ambry - had we gone to Myriad, their panel would have been incomplete at that point in time. I was given a max out of pocket of $200 but paid nothing.

    As it turned out, I was fully qualified for BRCA testing due to my initial diagnosis of two separate tumors according to the policy guidelines. The claim was denied however I won on appeal, appearing before a committee of lawyer, doctor and an unknown person on the phone. Don't be intimidated. You have a right to receive covered benefits.

    Once a known mutation is found, medical college or university research labs may be able to analyze samples from relatives for minimal cost. Especially for older folks on Medicare, that is an option worth pursuing.

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