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Genetic Test - Part 1

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Boz Find out more about Boz
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  • Genetic Test - Part 1

    If I was to complain that my insurance will not pay to have a Dr. set a broken bone in my left arm, I think most responses would be “what kind of lousy insurance do you have?” But if we then found out that I was insisting that only Dr. Bert Zarins be allowed to do it, after all he is the Dr. for the New England Patriots, I suspect reactions would be different.

    Insurance companies will pay for the complex blood test currently available to identify genetic mutations that are known to cause Hypertrophic Cardiomyopathy. The referring Dr. simply needs to indicate that it is medically necessary. Tests, which are specifically listed as experimental will initially be denied out-right by the insurance company; that decision can be appealed (HCM test is not on Harvard Pilgrim’s list). Also, and just as important, the lab that performs the test must accept the specific insurance and be recognized by that insurance carrier; if they are not on the “approved vendor list” there is a process for getting a one time approval – sort of an out-of-network type step.

    The customer service person I spoke with, just this morning at Harvard Pilgrim (HMO Plan), makes no promises about my specific situation but has never seen a genetic test request refused. Insurance will pay for genetic testing, the referring Doctor is the one who needs to “buy in.”

    Just like the broken bone example, perhaps we are wrong to be laying blame on the insurance companies. And NO, once again, I do not work anywhere in the insurance industry.
    • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
    • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
    • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
    • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
    • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
    • 2011: Brigham & Women’s - Medtronic ICD implant

  • #2
    Re: Genetic Test - Part 1

    that makes sense but I wonder how it would work in my families case. We are military and its hard enough to get a referral to a pediatric doc for my daughter to have a yearly echo or ekg. I wonder what they would say to my request for genetic testing
    Lana

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    • #3
      Re: Genetic Test - Part 1

      This is an ongoing discussion... one that will take many months to smooth out. I have heard of the testing being paid for and others are still fighting. If anyone has had it paid for by your ins. co please let us know.
      Thanks,
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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      • #4
        Re: Genetic Test - Part 1

        Originally posted by dew_drop_2
        that makes sense but I wonder how it would work in my families case. We are military and its hard enough to get a referral to a pediatric doc for my daughter to have a yearly echo or ekg. I wonder what they would say to my request for genetic testing
        If you need any help with this please let me know. My husband was active duty for about 4 years after his diagnosis and we had the kids screened annually. You can PM me if you'd like.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

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        • #5
          Re: Genetic Test - Part 1

          I switched PCP's in September after it became clear that my former cardiologist was not going to refer me to NEMC.

          Actually the final straw was when his office - to be fair, it was not the Dr. himself, told me that I couldn't even get the second referral I was seeking for a specialist at the Brigham. The Brigham is the same hospital that my cardiologist was affiliated with, but the specialist was considered out-of-network. I think the cardio sensed I was really miffed and went right to work on the second referral which included his OK for genetic testing.

          Long story short - I switched PCPs to have access to NEMC and then find that the referral for genetic testing comes through. Of course - you guessed it - that referral is no longer valid because I am not associated with the organization that provided it.
          • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
          • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
          • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
          • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
          • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
          • 2011: Brigham & Women’s - Medtronic ICD implant

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