genetic testing/insurance/cost

alinaandjared

I have not posted here in quite some time, but figured this was the best place to ask this quesiton.DH and I are planning on TTC in about a year or so-- I had intended on doing the standard jewish panel genetic testing, but after reading a post on the bump about cost, had a heart attack!
Did your insurance cover the test? If not, how much did it cost out of pocket. I am trying not to think about it until I have more information, which I will have before I go in for my annual in August.

Thanks ladies!

jessicabessica

So, I cannot answer your question because I don't know the answer, but I wanted to say that I have seen some events advertised where you go to a dinner and do the testing.  I have seen this at the JCC of Greater New Haven--not sure where you're located--so you might want to call around to various Jewish orgs to see if they might have anything coming up.

alinaandjared

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_genetic-testinginsurancecost?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:44585ca3-3c0e-4f60-a00e-20b6adb30a40Post:f05f4559-5fb7-4efc-8230-ca309afb79b6">Re: genetic testing/insurance/cost</a>:
[QUOTE]So, I cannot answer your question because I don't know the answer, but I wanted to say that I have seen some events advertised where you go to a dinner and do the testing.  I have seen this at the JCC of Greater New Haven--not sure where you're located--so you might want to call around to various Jewish orgs to see if they might have anything coming up.
Posted by jessicabessica[/QUOTE]
Did you know I was in CT when you posted that? We are 40 minutes from New Haven thank you thank you, will definitely look into that!

imimahoney

At my first pregnancy appointment I had the testing done. My ob said if I came up positive for any of them then my husband should get tested. 

I did receive a bill originally but then I called the testing facility and told them it was genetic testing for my pregnancy. My ob office rebilled them with a different code and I never received another bill, so I assume my insurance covered the whole thing. 

I'm pretty sure the originaly bill was around $350/$400 maybe. 

laur2511

My FI and I had this done several months ago. My dr referred me to another dr who deals with high risk pregnancy who had a genetic counselor in his office. They have a special panel just for Jewish genetic diseases (though I chose to get tested for all). I want to say the bill was around $300 but I can't remember exactly.

Only one of you needs to be tested because of you are a carrier of anything then your husband only has to be tested for that one disease. If you are both Jewish then I highly recommend you do this despite the costs.

On a side note: Many orthodox couples do this testing before they even go out on a date. There is a service that tests each person and I believe they call a number and enter each of their personal numbers (provided by the company) and it will tell them if they are compatible or not. No one gets the results to prevent anyone from being stigmatized in the dating world.
http://www.jewishgenetics.org/?q=content/connecticut

alinaandjared

thanks ladies...the numbers I was seeing ranged from 1700-3500. A few hundred dollars we could deal with.
Laur- yes I had previously been told by my Dr that there was no sense in us both getting testing unless my tests results were not ideal.

ElisabethJoanne

From my experience in working with insurance companies for more than 10 years now, if you are planning to get pregnant or are pregnant, some insurance plans cover the testing (if you're in a high-risk group, which most American Jews are), but not as a general life-planning thing similar to the observant potential dates described above.

I've read on chabad.org about various charitable organizations that cover the cost of testing for needy Jewish couples.

Shoshie

We have Kaiser - and it covered the testing. We had to call a different department and have them put in for the panels.

jessicabessica

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_genetic-testinginsurancecost?plckFindPostKey=Cat:Cultural Wedding BoardsForum:399Discussion:44585ca3-3c0e-4f60-a00e-20b6adb30a40Post:90fb9183-1879-470e-930b-bc93a03db502">Re: genetic testing/insurance/cost</a>:
[QUOTE]In Response to Re: genetic testing/insurance/cost : Did you know I was in CT when you posted that? We are 40 minutes from New Haven thank you thank you, will definitely look into that!
Posted by alinaandjared[/QUOTE]

Yes, it says it under your name.  I grew up in that area, so that's how I heard about it at that JCC.  Glad to help!

Related question--if my parents were tested and were not carriers, do I need to be tested?  My H's dad isn't Jewish, so it seems like his chances are down, does he need to be tested?  I know that we should talk to a genetic counselor, but I just wanted to see if anyone had this experience or any thoughts. 

Rachiemoo

My insurance covered the testing AFTER I was pregnant.  It turned out I am a carrier for Cystic Fibrosis.  So obviously I freaked out and we had to wait to get DH's results back (he was not a carrier thankfully).  So please, get the test before your pregnancy so you can avoid any worrying.

I know my SIL got the testing done for free at Brandeis, so maybe other colleges/organizations have it for free as well (like jessica said).

Rachiemoo

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_genetic-testinginsurancecost?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:44585ca3-3c0e-4f60-a00e-20b6adb30a40Post:5cbcf677-969c-462c-8c31-ef2ea6eab72a">Re: genetic testing/insurance/cost</a>:
[QUOTE]IRelated question--if my parents were tested and were not carriers, do I need to be tested?  My H's dad isn't Jewish, so it seems like his chances are down, does he need to be tested?  I know that we should talk to a genetic counselor, but I just wanted to see if anyone had this experience or any thoughts.
 
Posted by jessicabessica[/QUOTE]
Jessica - don't know about the other Jewish diseases, but I know for a fact that Cystic Fibrosis is common in non Jews as well (specifically white Europeans), so for peace of mind I would recommend that at least one of you get tested. 

ElisabethJoanne

If your parents aren't carriers, I don't know if you still have to be tested, but it should be easy to find out. Depends on whether it's a Mendelian trait or another kind.

elizanurse

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_genetic-testinginsurancecost?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:44585ca3-3c0e-4f60-a00e-20b6adb30a40Post:5cbcf677-969c-462c-8c31-ef2ea6eab72a">Re: genetic testing/insurance/cost</a>:
[QUOTE]Related question--if my parents were tested and were not carriers, do I need to be tested?  My H's dad isn't Jewish, so it seems like his chances are down, does he need to be tested?  I know that we should talk to a genetic counselor, but I just wanted to see if anyone had this experience or any thoughts. 
Posted by jessicabessica[/QUOTE]

We tested me first because I'm only halvsies and I'm + for Tay-Sachs, so Fi got tested. We're going to do the same thing for the full panel before we start trying. We only did TS at first because my GP didn't suggest anything else and I didn't know to ask :) Derp.

shirz903

I was tested twice and both times at no cost to me. My fertility specialist tested me and then my ob once I was pregnant. I told them I had all the results already, but its standard. I think it depends on your insurance. 

craigdana

I live in Mass and my insurance paid for the whole thing. Do before you are pregnant.

MrsMLRB

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/cultural-wedding-boards_jewish-weddings_genetic-testinginsurancecost?plckFindPostKey=Cat:Cultural%20Wedding%20BoardsForum:399Discussion:44585ca3-3c0e-4f60-a00e-20b6adb30a40Post:5cbcf677-969c-462c-8c31-ef2ea6eab72a">Re: genetic testing/insurance/cost</a>:
[QUOTE]In Response to Re: genetic testing/insurance/cost : Yes, it says it under your name.  I grew up in that area, so that's how I heard about it at that JCC.  Glad to help! Related question--if my parents were tested and were not carriers, do I need to be tested?  My H's dad isn't Jewish, so it seems like his chances are down, does he need to be tested?  I know that we should talk to a genetic counselor, but I just wanted to see if anyone had this experience or any thoughts. 
Posted by jessicabessica[/QUOTE]

Genetic testing technology is much better than it used to be, so you should get tested. Also, children on intermarried couples are more likely to be carriers. My dad is Jewish and my mom was Catholic and I am a carrier for cystic fibrosis. DH has two Jewish parents and he is a carrier for nothing.

OP, if you are having trouble finding where to get the low cost screenings, call your local rabbi and find out. Our rabbi made getting screened a condition of marrying us and he is the one who told us about the low cost screening program in the Chicago area.