Genetic testing - discrimination?

cmb35

HI All

I'm not really sure where to put this, but I thought I'd start out here. Please somebody re-direct me if there is a more appropriate thread or topic.

I met with a genetic counselor yesterday at Dana Farber. After going through the whole she-bang about the pros/cons, she ended the conversation by saying some people ask about the possibility of the results of the genetic testing being used to discriminate against someone - by either denying them health insurance, charging higher premiums etc. She said, "but the laws are very clear, they are not allowed to discriminate, the only group that is at risk are self-employed individuals, because the laws are less clear for individuals that are not covered under a group health insurance plan."

Well, of course those of you that know me (my mother should have named me Murphy) can guess - yup, self-employed. Worse yet, I'm currently on COBRA (ex-husbands group plan) and so need to obtain health insurance as a self-employed individual for the very first time this November.

The genetic counselor literally told me to go make sure I could find insurance coverage and wouldn't be discriminated against before going through with the testing. Her recommendation was to delay the testing until I got my new insurance, so that at the very least they could not say refuse to accept me as a plan participant.

Can this possibly be correct? Wouldn't the fact that I have already had bc at age 41 already make me a higher risk for insurance purposes (and jiminy cricket - do I need to worry about that now too?) I know I need to start making inquiries on Monday, but I'm just wondering if anyone knows anything about this.

Sorry this is so long! I was trying to include everything so it was clear, but didn't really think it all out first. As one of my favorite quotes (by Abraham Lincoln) reads, "I would have written you a shorter letter but I didn't have time."

As always, thanks in advance for you help, advice and support.

Colleen

florencedonna

Colleen,

I live in Massachusetts. I was diagnosed 10/10/2005 and 10/31/2005 my insurance stopped.  My husband's company closed.  When a company closes, there is no COBRA.  I called BlueCross/BlueShield of Massachusetts that I had my policy with and purchased a new non group policy.  They knew I had cancer.  There was no preexisting condition stuff.  It was expensive (1200 per month for a family plan, at that time a family plan with a group insurance plan was about 900$ per month) but no more expensive for me with or without cancer.  When I took a new job in 2/2007 which came with a group health insurance, it was no problem to transition to the new insurance.

Insurance regulations so vary somewhat from state to state.  The genetic counselor is right that it is riskier for self employed.  Is it self employed or is it non group insurance policies? Can you join the Chamber of Commerce or a Professional society and qualify for a group policy?

I did a ton of looking on the web about portability of insurance but never felt I could get a reliable answer about the subtleties.  I hope you live in Massachusetts because I think portability if fairly reliable here, one of the reasons insurance is so expensive in Massachusetts.  donna

cmb35

Donna,

Thanks so much for your response. I've since spoken to an insurance expert, and he assured me that MA is indeed a very safe state to live in, from the pre-existing condition/genetic test results perspective. He said that it is absolutely not an issue for me. He did say that NH and RI came to mind as states where although they are not allowed to discriminate (no one is obviously), they are allowed to ask about that type of information, which would not make me feel all warm and fuzzy.

What a nightmare for you! I had insurance trauma coincide with my dx too, but it was just a paperwork nightmare, I was never without coverage.

btw I was dx 5/05 and finished my chemo at the end of Oct 05, congrats to you on being 2 years out!