Denied BRCA Testing, adopted

Options
Rhondalynn
Rhondalynn Member Posts: 4
edited February 2018 in Genetic Testing

My adoptive mother had ovarian CA. her mother had ovarian CA. I was offered the test, for high risk, and said. "Sure." I don't think about being adopted, nor is it on my mind. My insurance denied it. The gene counselor put it through again, and I got denied. The gene counselor asked me why I got denied, and I said, "I don't know." Then I looked into it and thought, "Oh yeah, I'm adopted." I told the gene counselor I'm adopted, and she nearly hung up on me. And now they won't even consider it...I don't why, I get tested for everything else. I'm considered high risk due to no medical history, and frankly, my lack of medical history has turned me into sort of a hypochondriac.

I found out it's around $3,000 to get the test done out of pocket. I emailed Myriad. I've not had much of a cause, but I guess this is my cause, to allow for adopted women to be able to get BRCA testing covered by insurance.I don't know where to go from here. How do I get the BRCA testing done except to change health insurance?

Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    I am also adopted but was not tested for BRCA until after diagnosis.  I have zero access to any family history.  Being adopted does not make you "high risk" it only makes you unaware of your risk.  Unless you can provide history of close family being diagnosed, or early onset info for those relatives, you do not fit the testing criteria as it is currently used by both physicians and insurance companies.  Changing insurance companies will not increase the likelihood that the test will be covered.

  • Rhondalynn
    Rhondalynn Member Posts: 4
    edited March 2015

    I don't have any access to family history. That's the only issues I have about being adopted. I guess I can keep up the fight. I'm a little perturbed. I should'nt had said anything to the gene counselor, I guess.It's a huge ordeal to get my adoption files open, one I don't really care about except PMH and Family medical history.

  • JJOntario
    JJOntario Member Posts: 356
    edited March 2015

    I'm feeling for you as not knowing is frustrating. I could qualify for the test if my aunt had it in BOTH breasts...but she only had it one. With both of my parents gone (in their 60's) info is hard to get...and cancer for older generations was not talked about. How can you prove family history if you can't access it???

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Rhondalynn, we understand your frustration with this. However, indeed they will not pay for genetic testing if there is no information on your genetics. If you are very anxious about this lack of information, it may be worth pursuing with the adoption agency to just receive your medical history.

    Sorry for what you are going through.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2015

    Rhondalynn,

    Not to be nosy, but how old are you? I was diagnosed at 46, and even though there's not much cancer in my family (we're a high BP/stroke family), my MO was able to get BRCA covered by insurance. She pointed to some guidelines about women under 50, and insurance caved.

  • Rhondalynn
    Rhondalynn Member Posts: 4
    edited March 2015

    I don't care to know my birth mother. But I am on the website of Crittenton. It has a cross reference for adopted children to register. So I'm going to start there...at the source.


    I was interested in knowing before I got the disease. It's really frustrationg.

  • DiveCat
    DiveCat Member Posts: 968
    edited March 2015

    Yeah, being adopted itself does not make you high risk. BRCA mutations are actually very rare. For example only about 10% of breast cancers are hereditary related (ovarian cancer has a different rate, but I am not sure of it), and of those only about 25% are due to BRCA mutations. The majority of people who test, even with a known strong family history, and even if they DO have a cancer diagnosis, but no known BRCA-mutation in the family, still test negative. I HAVE a strong family history of pre-menopausal/aggressive breast cancer and had to fight a bit to get tested (as my mother, who does have a cancer diagnosis, would not test at the time and they prefer to test someone with a known diagnosis first) and I was still negative for BRCA mutations (I was still considered high risk for breast cancer due to my known family history).

    Do you have any other indicators of risk, like any pre-cancerous conditions?

    You certainly can look at doing out of pocket testing, that is what I essentially did as the wait here for covered testing (universal healthcare) would have been at least a year (it actually would have been longer, as I got the call from a GC in respect to testing here more than 1.5 years after I started the process...and months after I already had my PBMX). I already had had prior genetic counseling and been told I was high risk, and that testing would be appropriate, and so took those results and found a GC across the border in the US who gave me a second genetic counseling appointment/riskassessment and the testing, as I qualified on the risk assessment/threshhold used for referring for genetic testing. I went through Ambry and yes it was something like $3,000+ USD. However, I still qualified for that testing based on my risk factors, I am not sure that you can at this point just pay for testing even if you can't show strong risk factors/threshold of likelihood of having a BRCA-mutation.



  • Rhondalynn
    Rhondalynn Member Posts: 4
    edited March 2015

    I am 53. I am an HCC coding nurse.

  • GAMom4326
    GAMom4326 Member Posts: 1
    edited July 2015

    I have also recently been denied for testing because I am adopted with no access to my medical history. I went through the process of getting a subpoena for the medical record portion of my adoption records a few years back only to find them virtually blank - I guess the hospitals in the early 1970's were not overly concerned with recordkeeping back then. So, in my case, there is no history to be found.

    I am now 42 years old. I have undergone surgery for what they thought was appendicitis but was rampant endometriosis, I have had multiple benign ovarian cysts and have gone through several breast biopsies to "benign but let's monitor" results. I was essentially told I would need a positive result for myself to be qualified for testing since I have no positive history to present. That has to be one of the saddest things I have ever heard.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    Check out Color Genomics - they have a 19 gene Breast and ovarian cancer panel for $249 (self pay). I did it after I was denied the multigene panel twice. I'm still waiting on the results.

  • cb123
    cb123 Member Posts: 320
    edited April 2016

    I'm under the impression that the BRCA test is <$500 and that the Oncotype test is the $3,000 one???

    Have you called the lab directly? There was a new law last year that we can go directly to the lab and order our own tests and pay out of pocket,

    My surgeon paid for my test when insurance would not.

    BRCA: to see if you have a genetic mutation that causes a predisposition for breast/ovarian cancer

    Oncotype: to estimate risk of recurrence of early-stage, hormone-receptor-positive breast cancer

    cb

  • DanneMarie
    DanneMarie Member Posts: 1
    edited February 2018

    I know this is an old post, but did you ever get tested? Many people were only being tested for BRCA 1 and/or 2 and not the other genes. Myriad had a monopoly on testing for these genes after filing a patent and were charging thousands. I used Counsyl, which I was lucky to have been covered for, but saw it was billed at $999.00 for a full beast panel (which I learned I had a mutation of the ATM gene. Hoping you found the answers you were searching for Rhondalynn

    * An important note for anyone who has to pay out of pocket for any medical services...often the amount one is quoted for a medical service is what the provider bills Medicare, which they must bill to all insurance carriers. However, for medical services even petscans and others, there is a “cash price” which is significantly lower than the quoted price they would try to bill for. Another way for them to cash in on a persons grief and illness.

Categories