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Husband diagnosed with HCM -- Questions from battle with Insurance


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  • Husband diagnosed with HCM -- Questions from battle with Insurance


    My husband was diagnosed with HCM a little over a month ago, after we got him checked out since his Mother and Sister (younger than him) both died from HCM within the last 4 years.

    Due to the multiple deaths in the family and my husband's diagnosed HCM after MRI and tests, the doctor recommended an ICD implant, and my husband definitely wants it for peace of mind. They recommended a wireless S-ICD since he is young (31).
    Insurance would not cover the S-ICD, only the wired ICD, after multiple rounds of appeals and a final independent ruling. So... questions!

    1. We are considering self paying for the S-ICD surgery, but we are unsure if insurance would deny coverage for the battery changes in the future since they only OKd the wired ICD. That would be financially impossible. If we are under new insurance once the battery needs replacing, would they cover battery replacement or is there a chance they would deny it since the initial surgery of the wireless implant was deemed not medically necessary by our previous insurers?

    2. Husband is worried about limitations of arm movement with the wired ICD. What are the physical limitations that go along with having a standard ICD implant?

    3. Assuming insurance would cover the battery replacements, are the benefits of an S-ICD potentially worth self paying for it vs. accepting the wired ICD?

    This has been a scary time but I was so happy to find that there's a community of people here going through the same thing. Thank you so much!

  • #2
    Hi MissRutabaga,
    And welcome! I saw that you posted more or less the same thing on the Facebook discussion board. It looks as though you got a fair number of comments there, but I'd just add my voice to the suggestion that you call the HCMA.

    Myectomy on Feb. 5, 2007.