GINA Law ???

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tykikibuds
tykikibuds Member Posts: 7
edited June 2014 in Employment, Insurance, and Other Financial Issues

  Hi, I have a young family member BRCA1+ who was encouraged to participate in a previvor program at MD Anderson. Her insurance won't pay for it because she has a pre-existing condition, being BRCA+. Her insurance co. said because they pay part of her premium, they have that option. My basic understanding of the GINA law is that insurance cannot deny you coverage and employers cannot make job placement decisions based on the genetic information. What about insurance having to actually pay for services for people that have a known genetic mutation? Is there nothing in this law related to this issue? Please help educate me, I'm baffled.

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    GINA mandates that an insurance company can't refuse to give you a policy at all, and also that they can't charge you more for that policy; AFAIK, it doesn't control whether or not the company pays a specific claim for service under that policy. My guess is that whatever a given insurance policy's specific terms are, in regard to coverage of claims/services, would apply.

     I believe that according to GINA, the company is allowed to obtain and consider the results of genetic testing as part of their process of deciding whether or not to pay for something.

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  • tykikibuds
    tykikibuds Member Posts: 7
    edited August 2010

        That makes me feel ill. I feel as though the older family BRCA+ members and I (I was the only negative one but I ended up getting Leukemia, go figure) should not have encouraged her to get tested. We should have let her quietly go about her life until she gets diagnosed then she would be covered. Sorry for the emotions but I am venting here and I am angry at this whole situation.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited August 2010

    I have heard of this and they should definitely let people know that insurance may not cover them if the results show +.  I personally did not recommend for my sisters to have the test for this reason.  What good is the results of this if you can not get treated!

    Terri

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    I found a definitive answer for you (albeit not good news). Frown  It's on pages 2 and 3 of the PDF file linked below, and says

    "GINA does not mandate coverage for any particular test or treatment" and also "GINA does not prohibit health insurers or health plan administrators from obtaining and using genetic test results in making health insurance payment determinations."

    http://www.genome.gov/Pages/Policy/Ethics/GeneticDiscriminatin/GINAInfoDoc.pdf

     So as grossly unfair as it is, the insurance company does have the legal right to use her test result as a reason to refuse to pay. Frown

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  • tykikibuds
    tykikibuds Member Posts: 7
    edited August 2010

      ibcmets -

     Thank you for your reply and I hope you are doing well.

      Yes, what good are the results if you can't get treated and in many cases if your insurance does not cover the claim, the person just won't get the treatment. I would have liked her to pay out of pocket and never even let the insurance co. know, but it is a very expensive program which shocked me. That's another subject I'm not starting hereLaughing.

      I have to say the decision was up to her to get tested. I shouldn't have used the word "encouraged" in my earlier post ... or maybe we did and didn't realize it :( I hope not. She is a very intelligent, independent, strong-willed young lady who is not easily swayed by anyone. She went for counseling first then she made the decision but what a heavy load that is to carry. She is now worried she may not get future mammograms, etc., paid for. I hope it was just the previvor program her insurance objected to.

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  • tykikibuds
    tykikibuds Member Posts: 7
    edited August 2010

    lovemygarden -

      You are wonderful! Thank you. I appreciate you researching the wording in GINA pertaining to this subject. I am saving the link. We were all tested in 2007 before the GINA law came out. My genetic counselor did tell me insurance may be a problem but there was a law being worked on to prevent people with genetic mutations from being discriminated against. I think we were all mostly focused on getting tested and answers. We have/had many family members with breast cancer/triple neg and we are just fed up with cancer tagging each of us one by one. None of us regrets being tested, we all believe knowledge is power.

    Thank you again, much appreciated.

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  • Del11
    Del11 Member Posts: 944
    edited August 2010

    You should be sure of the reason for denial... are you 100% positive it was due to "pre-existing condition"?  I had trouble even getting my test paid for because the genetic counselor billed it as preventative, and I was only allowed a certain number of preventative visits per year. Or something like that.

    Just saying... the issue could be with the way the bill was submitted. You or your family member should talk to insurance and the hospital billing office to understand the reason, and ask the insurance company to show you/her the policy stating why they won't cover it.  I just find it hard to believe that any insurance company is conflating genetics with pre-existing condition. It's not a "condition". That's not me being indignant, that's me thinking maybe there was a miscommunication somewhere.

    If she still has no luck, she should contact Sue Friedman at FORCE, http://facingourrisk.org .  I think she can give some advice to help her.

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    I find it interesting (and unfortunate) that GINA only applies to health insurance companies, and not to life insurance companies. Under GINA, the mere mention of a family history of a disease (for example the fact that someone's parent or sibling died of heart attack, i.e. heart disease) is considered "genetic information" and thus a health insurance company cannot deny or charge a higher premium for a policy because of that fact. Which is all well and good. But life insurance companies can and always do use that same kind of information to either charge more for or refuse to give someone a policy.

    I wonder why GINA doesn't apply to both types of  "disease-related" insurance? If it's only because of the typical dollar amounts paid out by insurers per type of insurance, well,  the cost of treatment for cancer, heart disease, diabetes, longterm can run into hundreds of thousands of dollars too, just like many life insurance policies are for that much.  And there can easily be many different claims submitted to a health insurer related to a given disease over a person's lifetime, although there's only one single claim that's ever paid under a life insurance policy!

    Seems to me that what's sauce for the goose should also be sauce for the gander...

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  • tykikibuds
    tykikibuds Member Posts: 7
    edited August 2010

      Thank you all for the additional thoughts. I am directing this discussion to her and her mother. They live in another state and her mother (bc 2x's) is very familiar with FORCE.

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