Genetic testing and huge bills. Are they really necessary?

Cinnamon4

I got genetic testing done through Counsyl at the recommendation of my OBGYN since I'm over 35.  It included gender results.  I had it done with my first but didn't get such a huge bill, maybe because I had different insurance at the time.  This time, it was $1,200!  Although almost the entirety of the billed amount got covered by insurance, $1,200 is being applied to my deductible.  I feel ripped off!  And I'm sure the hospital delivery bill will be huge too which makes my head spin.

Anybody else feel like these genetic tests are unnecessary?  My test with baby's #2 confirmed the same results I got with baby #1's test, except the gender.  I felt like if I said no to the test though, my OBGYN would look upon me badly, or maybe that's just my insecurities talking.

ButterMyBiscuit

This is a very personal decision and we have a thread or two about them. To some women, they are very necessary..and to others, not so much. It truly varies on your situation. I get that they're expensive but some women are willing to pay for peace of mind.

PugsandKisses

Quick question, does your insurance pay for 100% once your decutible is met?

mandyjulie

@Cinnamon4 You could have said no, your OB doesn't get to "judge" you about that type of decision.

Like Butter said, it's about your preferences. No, they are not necessary, as these tests only became available a few years ago. Some people get absolutely no scans/genetic testing of any kind throughout pregnancy. Others opt for all of it, regardless of costs. 

That said, the cost issue is pretty nuts when you think about it. These companies operate like brokerage firms. They make deals with offices. My office made a deal with a company in which we only have to pay $25. I think in a couple of years, lower-priced options like this will be widely available.

pourmeanothermocktail

That's an insane cost, I'm sorry. Sounds like had you known that ahead of time you might have opted out. I did only a simple genetic screening test on me. Then something came up on it, so we had DH do a blood draw. ONLY if he comes up with also being a carrier for the same thing will we do any testing on our leech.

I think the biggest reason they "suggest" testing the baby is that even if you guys aren't carriers, as you both get older, odds of genetic "oops" issues increases, such as trisomy 18, trisomy 21 (down syndrome), etc. Neither one of you can be a carrier for these. It is definitely a very personal decision for the mom/couple to make on whether they want to know these things ahead of time.

Personally, those things I don't need/want to know before birth. The weird "Smith-Lemli-Opiz" syndrome that I am a specific carrier of, different story. I need to know whether there is a 1 in 4 chance that any of my child would have this. It's an actual genetic disease rather than an anomaly where chromosomes don't split correctly.

Cinnamon4

Thanks for the replies.  
@PugsandKisses, my husband's company pays the deductible up to the last $500 and then we pay the rest, followed by co-pays and coinsurance.  So I'm concerned about going above what his company pays for.  I was originally told by our insurance company that the gender test alone would require a $15 copay.  Nowhere near it!  My OBGYN didn't explain what would be tested or even what the cost might be.  She just sent me to the lab to get my blood drawn right after seeing her.  Then she changed the company she would be submitting my samples to at he last minute.  Originally, it was supposed to be Materniti21.  

The test confirmed my results with my first baby which is that I have an intermediate allele for Fragile X.  That means my child won't have the disorder since I would need a premutation or a full mutation.  I guess I should feel good about those results, right?  Plus I'll be having the girl I was hoping for.  I just feel embarrassed because I used to work at an insurance brokerage and my job, among other things, was to find out how a claim would be processed beforehand so as to avoid any surprises.  I totally didn't do my research on this one.

PhoebeJune1984

If your husbands company pays for the deductible (except the last $500), shouldn't they expect that they will be paying a lot? I mean, they are the ones that pick the insurance plans. Example:  If they pick a $2,000 deductible plan, they have to assume that they will be paying $1,500 of every deductible. 

Or are you worried about what you are going to be paying, after his company pays the deductible, and you are left with the bills after that?

carrieandr

Now I'm nervous. My dr told me insurance covers it since I'm over 35. Now I'm wondering if I'll get a bill in the mail.

jlgriff11

I chose not to get genetic testing done for that very reason. Our first blood tests alone (for all the normal stuff plus HIV and STD's) was over $700 after insurance. We will see what we can see at the anatomy scan on the 5th and then if the Doctor suggests there may be issues we will go from there. No need to freak myself out for no reason and be miserable the entire pregnancy for something that "might" happen and certainly no need to spend thousands of dollars for something that isn't even fool-proof.

megstervt

I chose not to have any screenings due to the cost. However my OB was totally upfront about the costs and gave us an estimate based on which test we selected. They didn't even bat an eye when we opted out.

rakel88

I didn't have any testing done and no one said anything about that choice. They are optional after all. I don't know what it would've cost if we had done it, but yours is insane! I'm guessing you wouldn't have done it if you'd known ahead of time?

thebigoaktree

Our genetics Doctor talked about all of this with us before I even agreed to get the harmony done, went through all options and all the costs, I think you were not given information that you needed. I was on my insurance at the time and I just got my bill in the mail. 130.00 compared to it being 4,000, however he explained that the company does something for a flat rate if you call and talk to them. Which we didn't have to do but he made sure we knew all our options. I get worked up about this topic because I think it should be covered with insurance 100% and to me it should be preventive care in a way. That you can prepare yourself for something if need be. Your doctor sounds like what my moms told her when she was 30 and pregnant with my sister. Scared her into doing these screenings and there's nothing wrong with my sister expect maybe she sucks at math.

thebigoaktree

CarrieandRoy said:

Now I'm nervous. My dr told me insurance covers it since I'm over 35. Now I'm wondering if I'll get a bill in the mail.

You should be ok, you can also call your insurance company, we did that, and when I say we I mean I made my husband call.

thebigoaktree

jlgriff11 said:

I chose not to get genetic testing done for that very reason. Our first blood tests alone (for all the normal stuff plus HIV and STD's) was over $700 after insurance. We will see what we can see at the anatomy scan on the 5th and then if the Doctor suggests there may be issues we will go from there. No need to freak myself out for no reason and be miserable the entire pregnancy for something that "might" happen and certainly no need to spend thousands of dollars for something that isn't even fool-proof.

You do know that the harmony is 99% accurate.

ellou05

Ugh, sorry to hear that.  That's not cool.  

When I did Verifi testing, I had to sign a form for it that said the maximum I would pay was $85.  I just looked up the EOB for the heck of it and was surprised to see it's fully covered as I'm under 35...?   Wasn't expecting that.  Also interesting what a huge discount they provide my insurer.   

Amount charged: $5,250.00
Discount: $4,455.00
Amount Approved:  $795.00
Plan Paid $795.00 
My payment:  $0  

heade

My doctor said that my insurance not covering the test would bill me for the test $3,000 and that they will try billing me three times and then the company that makes the test would send the bill which is $99. Double check with your doctor to see if that's the case for you! Hope that helps

hannahmp

My office said that even if insurance paid nothing, Verifi would be $99 Max. I was thrilled to have early testing done. I'm 26 btw, with no reason to have the test. My entire bill for an ultrasound, urine lab test, multiple blood tests, pap, and the verifi was $376, so that seems crazy for it to be so expensive if you are actually over 35!

nopegoat

I have always skipped all the extra tests.

jlgriff11

thebigoaktree said:

jlgriff11 said:

I chose not to get genetic testing done for that very reason. Our first blood tests alone (for all the normal stuff plus HIV and STD's) was over $700 after insurance. We will see what we can see at the anatomy scan on the 5th and then if the Doctor suggests there may be issues we will go from there. No need to freak myself out for no reason and be miserable the entire pregnancy for something that "might" happen and certainly no need to spend thousands of dollars for something that isn't even fool-proof.

You do know that the harmony is 99% accurate.

99% accurate isn't 100%. Either way, not affordable for everyone, and not everyone is offered 99% accurate screenings. Cousin was told, via testing, that her baby would have Downs. Just ended up with a big head. This is my opinion and is not intended to persuade one way or another. I don't think it's worth the money you spend.

CosmoAnne1

Talk to your dr and see if it can be coded diffrent so it doesn't cost so much. Sometimes 1 code makes the difference. Also check with your insurance hand book or call them and ask if certain age groups for certain test get discounted.

stillcozy

I did the NT scan and the spina bifida test and to me knowing was worth the money. I would like to prepare if my baby is likely to have special needs so I can start finding resources now. I didn't do the harmony because I didn't qualify being younger and not high risk I went with my dr's reccomendations and didn't feel the need to pay a ton just to find out the sex
If my NT scan would have come back with more distressing percentages I would have probably done more testing though.

thebigoaktree

99% is more accurate than a 1 in 1200 chance, which I will gladly have that test done than one that puts you in a ball park figure. Sorry, I'll take knowing if my baby needs a possibly a huge surgery or if he just needs a small opening on the back of his neck stitched up. You might not find it necessary @jlgriff11 but some of us do. The problem with your first statement I guess is how you worded what you were trying to say.

carrieandr

I don't think jlgriff11's cousin had genetic testing done (which is what this thread is about). A diagnosis of Downs based on a genetic test would be because of the presence of a large proportion of chromosome 21. I'm guessing she had an NT scan, which is not a blood test. --I'm just pointing this out in case anyone gets concerned about the reliability of genetic testing based on that story.

thebigoaktree

Thank you @CarrieandRoy.

kayham12

I'm opting out this time. I only had MaterniT21 after my anatomy scan when my doctor had a soft marker for chromosome abnormalities. My insurance still didn't cover it 100% and I originally got a bill for about $3000 i think we ended up paying $285. My daughter has a very rare variant of Turners Syndrome and I'm so glad I didn't know before 20 weeks. The test results caused so much stress for us and we were told doom and gloom from the genetic counselor we met with. I'm glad I kind of found out before she was born. That genetic test doesn't actually test for Turners and it said "possible turners". We did not get confirmation until she was 4 months old. Chromosome abnormalities are far more complex than a yes and no answer. No doctor will be able to tell you how your child will present symptoms of the syndromes.

jlgriff11

Alright alright. I concede I have no idea what genetic test she took. All I am saying is to me, its not worth the stress or the financial strain. To others, it is. As long as you don't think I'm some kind of irresponsible parent because of it. Or I guess its OK if you do, but I'd prefer you keep that particular opinion to yourselves lol

mandyjulie

@jlgriff11 No way, it's got nothing to do with what kind of parent you are. This is a decision people (who aren't higer risk for chromosomal abnormalities) make based on how much they want to know before baby's here and the desire for peace of mind. Balanced with how much it'll cost them of course.

Mine was only $25 this time so it was just a no brainer.

thebigoaktree

My insurance pays jack for a paps but then covered any genetic testing we wanted... *eye roll*.

fleurdelakeview

I just got new insurance and the policy is very unclear as to how they handle testing (ETA - they cover for AMA but below, it's almost on case by case). But to me it didn't matter. My younger sister has Down syndrome which doesn't increase my chances of having a child with DS BUT means I know what it's like both to be in a family with a special needs child and what she has gone through in her life. I need to know for my peace of mind and that to me is priceless. Also, since I've had two losses I really want to make sure I know what's going on.