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GINA clarification


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  • GINA clarification

    I'm trying to understand the GINA in the context of my own searching for health insurance and being denied (I'm not giving up!) based on the diagnosis of HCM. When it goes into effect, will it outlaw such denial? My impression is that it will affect insurance based on genetic considerations, including genetic testing. Insurance coverage based on a diagnosis of HCM in and of itself would not necessarily change.My diagnosis was based on an echocardiogram. Is my interpretation correct?

  • #2
    Re: GINA clarification

    You are correct. GINA protects those who have had a genetic test and has nothing to do with a clinical diagnosis. If you have been diagnosed with HCM by echo that is a clinical diagnosis, thus it is then seen as a "pre-exsisting condition". This is where you are likely running into problems with insurance.

    I remind you all again to look closely at health insurance issues when you cast your votes this November - thousands of your HCM family are in bad shape because of the lack of access to coverage.

    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)


    • #3
      Re: GINA clarification

      I want to echo what Lisa just said. Anyone who has any kind of diagnosis (HCM, diabetes, cancer, even something as simple as multiple ear infections) can operate to disqualify them from being able to obtain health insurance. If you don't have health insurance, then you can't get decent care. This is a vicious circle. The people who most need health insurance --the people who have something wrong with them -- are the ones who can't get it. As a result, people are suffering and can't get the treatment that they need.

      So, come November, let's vote and pay attention to this issue and hopefully our next administration will fix some of these problems or at least improve them, because there are lots and lots of issues now.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


      • #4
        Re: GINA clarification

        Let me change the subject slightly. While not having the slightest sympathy for insurance companies of any kind, it's worth noting that pre-existing condition clauses in some employer-offered policies actually say they'll cover pre-existing conditions after some time period. That time period, of course, is enough to put off most people with serious pre-existing conditions.

        For example, we were just offered a disability policy that said they won't pay for pre-existing conditions for, I think, the first year of coverage.

        Yes, that's rotten, and it doesn't help if you have a problem that needs attention right away. My guess is that they do this to appear to be non-discriminatory because they'll cover you for other things and will *eventually* cover the pre-existing condition. My other guess is that this probably succeeds in greatly lowering their costs.

        But if you have no other insurance and are stuck, for some people some of the time such policies may be temporarily be the best of some rotten choices.

        Now we can, and should, go back to beating on the insurance companies.

        Myectomy on Feb. 5, 2007.