GINA bill signed by Bush last month

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BethNY
BethNY Member Posts: 2,710
edited June 2014 in Life After Breast Cancer

GINA- genetic information nondiscrimination Act...

 the next time someone tells you they are afraid of having the BRCA test- direct them to this.

http://www.sciencedaily.com/releases/2008/05/080526152654.htm

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  • Jen44
    Jen44 Member Posts: 631
    edited June 2008

    Thanks for letting us know.  It's nice to have a win for a change!

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  • iodine
    iodine Member Posts: 4,289
    edited June 2008

    I saw that it went thru.  When I was dx'd I didn't get one for the very reason of discrimination of self or for my daughter.

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  • BethNY
    BethNY Member Posts: 2,710
    edited June 2008

    I ended up paying out of pocket b/c I was afraid at first... then got reimbursed.  But, the loopholes of insurance covering the BRCA test is still ridiculous.  Because I tested negative, even though my sister is under 40, of ashkenazic decent, and had a sister with cancer, insurance wouldn't pay cause I was negative... RIDICULOUS.

    Anyway, I heard even though it was passed, it will take 12-18 months to roll out, although I don't really understand why it wouldn't take affect right away.

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  • BethNY
    BethNY Member Posts: 2,710
    edited July 2008

    Whether they had the reults or not, the GINA bill prevents them from doing anything with that information.

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited July 2008

    Just like when a company wants to fire someone for other discrimination, they'll find a way. Just a more subtle and not 'pinnable' way.  That's my concern. Once your file is marked with it, they can find ways to avoid you or drop you.  It's the same for other heriditary things.  My mother has a genetic thing and could not get life insurance about 10 years ago b/c of it.  SHE'S 80!  How freaking stupid is that? I'm sure she already had a premium figured in for her age! JUST NUTTY what insurance gets away with! LIKE THAT Maximum life payout!  WTH?

    I think we should have a maximum pay out on insurance premiums. so after 40 years it's FREE to be covered?  Makes sense to me.  If you've not used your million or what ever max, then your insurance should be free after paying it for so many years! :)  Lalalala land I suppose...must be the heat again! :D

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  • BethNY
    BethNY Member Posts: 2,710
    edited July 2008

    Well, the unfortunate thing is that LIFE insurance CAN discriminate.  I don't think we will EVER see that change.

    My hope is that with the GINA law, people who avoided genetic testing out of fear, can now get it done.

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  • BethNY
    BethNY Member Posts: 2,710
    edited August 2008

    I attended the kickoff breakfast for Making Strides Against Breast Cancer this morning, and the survivor speaker was actually a PRE-VIVOR!!  She was the oldest living female in her family.  Her mom, grandmom, aunts, and sisters had all died of BC and OC, and she told the story as her sister was dying, how she was approached in 1999 to do genetic testing.

    Her story was moving, and I am so glad that American Cancer Society put someone who is BRCA +, and chooses to have preventative surgery as the survivor speaker for this year!  It's about time that we started honoring and recognizing pre-vivors, and also spreading the word about genetic testing and who should have it.

    just thought I'd share.

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  • iodine
    iodine Member Posts: 4,289
    edited August 2008

    My college roomie is a pre-vivor (love that name) and I have always been so impressed that she had the nerve, after too many scares, to get a bilat mast.  Her mom and 2 of her sisters have had bc and Mom died when she was a kid.

    Yes, I agree!  They should be honored.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    One of our customers came in a few months ago, young mom, under 30, 2 kids. She is a pre-vivor!  Double mast with recon. And she is so happy about her decision to fight BC this way!  She said her sister is next up!

    ----------

    I just finished my forms for genetic testing ... already had the 1st appointment.

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