Last minute considerations before testing

[AniSk]

I met today with the genetic counselor and neurologist at Columbia for a pre-testing session, as part of the ALS Families Project. I’ve been in the study for a few years now but with undisclosed results. I’ve pretty much decided that I’d rather know at this point, than deal with the uncertainty of not knowing. They are supposed to be mailing a cheek swab which I’m to send back early next week. At that point it will be 6 weeks until we have another session to get the results. When going over all of the consents and paperwork, I realized that I’ve overlooked upgrading my life insurance or getting long term care insurance. I’m wondering how much this matters given that the testing will be done as part of research (and not through insurance). We have open enrollment and option to buy into LTC through my job in November. Part of me thinks that I should just wait until after that but I’m also eager to just get this done with. It’s like I spent so much time working myself up to the decision and now that it’s made I don’t want to wait any longer. Anyone have any insight on this??

 

[Nikki J]

If you add it at work are you completely sure there are no questions about pre existing ? I have a vague memory of my work having some things that if you had previously refused something they could ask if you picked it the next year. It might just have been upgrading life insurance above a certain amount though. Just check to be sure.

I was always told that testing during research wouldn’t be a problem unless you disclosed it to someone and it got into your record. I heard this year from a lawyer whose expertise this is that this may not be true. She also said that companies are asking more about genetic issues when they screen people. Not all companies but some she said.
I understand wanting to get it over with but maybe just to be sure get what you want for life and verify you can get ltc at work without issues? That might not take very long?

 

[lgelb]

Yes, quite often if you don't take the coverage at your first eligibility when you join, you will be underwritten thereafter, meaning they will ask health questions and possibly get medical records. Nikki is right that you should find out if that will be the case.

Best,
Laurie

 

[AniSk]

On my job’s HR site it states that voluntary benefits “are available without having to answer any medical questions (up to the stated limits) …” it also says cost is based on age at issue and whether you use tobacco. But this is just the informational pdf- not sure if there’s additional fine print in the actual policy.

Open enrollment is only about 2 months away so you’re right that it’s probably best just to wait.