Cysic Fibrocis

[Tigger1]

My sons girlfriend is expecting a baby soon . When she was at the Dr in July she was told that Cysic fibrosis ran in her family. She and my son were then told to get blood test as a precaution.
We just got a bill for my sons test, for nearly $7000 for the blood test. Is it possible for it to be that high?

Was it really necessary to test? We have no Cyscic fibrosis in my family.
Oh btw, the test came back negative .

 

[princess momma]

It sounds like they did genetic testing on your son, which probably isn't necessary if they're already expecting.

 

[JessicaR]

It sounds like they did Genetic Carrier Testing. There are people that are symptomless carriers of the defective CF gene. This test can help detect carriers, who could pass CF onto their children. I hope they informed him before doing a test that costs $7000!

A sweat test is usually done to diagnose CF when a person exhibits symptoms.

Edited to ask - Did his wife test positive as a carrier?

 

[golfgal]

I agree that the test was probably unnecessary since they were already pregnant. Generally that is something people do BEFORE having a child. Since they were already pregnant it would have been more appropriate to test the baby after he/she was born.

I have a good friend that has a DD with CF. She is now 20 years old. They agonized over having another child as their chances were 1 in 4 they would have another child with CF. They decided to have another baby and she does not have CF.

 

[Lisa loves Pooh]

Well they do the blood testing on me--my OB only charges $2200 for my entire prenatal care and delivery (negotiated rate)---that blood test fee sounds....astronomically impossible. My husband did his blood test (he was negative for CF) and I think our co-pay was $15 or something. No way that the test originally cost $7000. It really sounds like they went above and beyond what they were supposed to do.

I believe both mom and dad have to be a carrier for CF to come up (that is what I was told).

I hope you guys are not responsilbe for $7000.

ETA: We only found out when pregnant with my third. I am uncertain if the testing is new, but I wasn't told I was a carrier until my 3rd pregnancy.

 

[JessicaR]

Well they do the blood testing on me--my OB only charges $2200 for my entire prenatal care and delivery (negotiated rate)---that blood test fee sounds....astronomically impossible. My husband did his blood test (he was negative for CF) and I think our co-pay was $15 or something. No way that the test originally cost $7000. It really sounds like they went above and beyond what they were supposed to do.

I believe both mom and dad have to be a carrier for CF to come up (that is what I was told).
I hope you guys are not responsilbe for $7000.

ETA: We only found out when pregnant with my third. I am uncertain if the testing is new, but I wasn't told I was a carrier until my 3rd pregnancy.

Thats correct and why I was wondering if the wife tested positive and then he was tested. I have no idea of the cost but it sounds so outragous to me too! Even more so if they did the test and just sent him a bill w/o being informed of cost!

 

[Lisa loves Pooh]

Thats correct and why I was wondering if the wife tested positive and then he was tested. I have no idea of the cost but it sounds so outragous to me too! Even more so if they did the test and just sent him a bill w/o being informed of cost!

I tested + and only then did they test the hubby.

OP--I would be inclined to double check the bloodtest request and dispute the charge. They shouldn't have done anything more than what they did for mom.

 

[Chuck-PA]

My son, who is 21 yrs old has Cystic Fibrosis.

Back then (1988) we were give the option to have genetic testing prior to a second pregnancy. At that time, insurance could deny coverage from this test because of pre-existing conditions.
We never had anymore but we do have many great memories with our son, as his health came across some speed bumps.

There is CF on my side of the family but not on my wife's side.
But the disease was not labeled until the 1950"s. And on both sides of our families there were babies who died from pneumonia in the early 1920's. This could have meant they had cystic fibrosis and was not diagnosed as such back then.

 

[jfoofj]

Both parents need to be carriers for a child to be born with Cystic Fibrosis. I was tested before having my son and I am not a carrier so we didn't bother to test my exH (who was adopted and has no medical history, so it was a bit of a concern). I felt pretty confident that I wasn't a carrier since there is no CF in my family at all, but you never know. I work with CF kids, and I wanted to know if I was a carrier, even though treatment for CF has come a long way, I wouldn't have wanted to risk having a child if it was a possibilty.

As for the bill, that is just ridiculous. I would ask to see the itemized bill and dispute it. I disputed a bill for a NICU consult when my son was born via emergent c-section, he needed to be in a special care nursery for supplemental O2 for 6 hours, but was never admitted to the NICU... they said if he had been admitted to the NICU insurance would have covered it, but because he wasn't admitted they charged me $900!!!! I fought it... the reasoning was stupid... if he had been admitted to the NICU his care would have been THOUSANDS and they would have paid it, but because he didn't require extensive care and it was cheaper I had to pay it?!?!?! Nope.... I didn't have to pay a dime. Dispute it!

I'm glad the test was negative.

 

[CF'er]

I have CF and before we had kids my DH was tested. He was negative for all they tested for. I don't remember getting a bill like that. I would dispute it with your insurance.

 

[sunnyday123]

First off, I am glad the test was negative. My best friend in high school had CF, and I remember feeling so helpless because there was nothing I could do for her but carry her books from class to class.

However, I would dispute that bill. Does your son have health insurance? Seems to me they should have covered it. Good luck.

 

[maroo]

I hope the bill was just the CHARGE for the test.

The charges are MUCH higher than what the insurance company will most likely "approve"...

I would not worry too much about the bill until the bill after the insurance weighs in.

If you don't have insurance...I would call the doctor that ordered the test and ask them if they have an assistance available that would help cover it.

We have companies that do lab tests for us that are very expensive...but the insurance companies only pay a fraction of their billed charge. And if the patient has no insurance, they usually grant a very deep discount...and make very small payment arrangements with the family.

 

[crashbb]

The problem with the "well I tested negative so we are safe" thing is that there are over 1000 mutations within the CF-causing gene that can cause CF. The vast majority of CF patients in North America have one or two copies of the same mutation (delta F508), but there are a lot of really rare mutations out there (about 60% have two DF508 mutations and 80% have at least one DF508 mutation).

Most genetic screenings only look at the major mutations (since, the vast majority of people will have one of these). However, there have been quite a few cases where a mother tested negative (so the father wasn't tested) and then a child is born with CF. Further testing, shows that the mother had a rare mutation not picked up in screening. The odds of both parents having rare mutations is pretty much null. So, once one parent shows up as a carrier, the second parent is often given the complete mutation panel (rather than just the screening panel). Is it possible that this is what your son received? I have no idea of the costs involved (and I'm in Canada anyway, so our costs are likely totally different).

It does seem very strange to me that the cost of the test (or at least an estimate) wasn't provided before the test was done.

 

[lil mermaid]

I am guessing that your son's girlfriend tested positive as a carrier for cystic fibrosis. That is why they would test your son. If both were carriers, there would be a 25% chance that the baby would have the disease.

It is a simple blood test, and I agree that $7000 seems quite high. I'd just give a call to your insurance company to see what they say. You should find out if the mother is indeed a carrier before you call, and let them know that is why your son was tested.

Good luck, and I am glad his test was negative.

 

[pipersmom]

I would say the reason they wanted to test before the birth is that there can be complications for the baby at birth if he/she has CF, and it's much easier to deal with knowns than unknowns if that were to happen. (Especially when there's a known history). $7000 seems steep unless they are doing the complete panel, looking for ALL known mutations and not just the most common ones. I know the complete panel is very expensive, but I don't know exactly how much. I'll try to find out. The results from it usually take 2-3 weeks to come back, so if took much less than that for your son's testing to come back, it was probably just the simple test, and definitely worth disputing the bill. Never be afraid to call and raise a little cane when you need to, the squeaky wheel gets the grease

Amanda (mommy to an 8 yr old sometimes princess..with CF)

 

[Tigger1]

My sons girlfriend found out during a routine check-up that it CF was on her side of the family. Her sister used the same doctor so I guess that is how the dr new. The doctor told her that she and my son should be tested. They called in the test to the county hospital where my son went seeveral days later to take the test.

My son was never told the cost. He does still have insurance threw me, which ends in December when he turns 25. My insurance pays about 50 % of the first $11,000 of network providers. ( I pay over $4000 a year for my childrens coverage, mine is paid for.

The bill did show allowed charges being just over $4000 but had no write-offs for these. Therefore, our part is over $4000. I think there must be some errors. First of all the hospital is in the network, the bill does not credit for it.
Second, this seems way too high. Third, I have not received any bill from the hospital, just got insurance part, test was done July 30th.

Another fishy thing, last spring I got the insurance papers for what a dentist billed. The problem with that was I never went to that dentist and I never had been to the town this dentist was from. I called the insurance to report possible fruad. They told me I would need to contact the dentist to have them return the charges. I thought, why would I call a dentist I never went to to have them return a payment my insurance sent them. I did not get around to calling the insurance again to speak with someone that new what they were doing. Later on in the summer our skin dr mentioned that the insurance provided was sending duplicate forms out, due to fruad.
Do you think maybe someone is trying to fruad the ins again? I did get another insurance form that showed the dental $$$$ bill reversed.

 

[golfgal]

My sons girlfriend found out during a routine check-up that it CF was on her side of the family. Her sister used the same doctor so I guess that is how the dr new. The doctor told her that she and my son should be tested. They called in the test to the county hospital where my son went seeveral days later to take the test.

My son was never told the cost. He does still have insurance threw me, which ends in December when he turns 25. My insurance pays about 50 % of the first $11,000 of network providers. ( I pay over $4000 a year for my childrens coverage, mine is paid for.

The bill did show allowed charges being just over $4000 but had no write-offs for these. Therefore, our part is over $4000. I think there must be some errors. First of all the hospital is in the network, the bill does not credit for it.
Second, this seems way too high. Third, I have not received any bill from the hospital, just got insurance part, test was done July 30th.

Another fishy thing, last spring I got the insurance papers for what a dentist billed. The problem with that was I never went to that dentist and I never had been to the town this dentist was from. I called the insurance to report possible fruad. They told me I would need to contact the dentist to have them return the charges. I thought, why would I call a dentist I never went to to have them return a payment my insurance sent them. I did not get around to calling the insurance again to speak with someone that new what they were doing. Later on in the summer our skin dr mentioned that the insurance provided was sending duplicate forms out, due to fruad.
Do you think maybe someone is trying to fruad the ins again? I did get another insurance form that showed the dental $$$$ bill reversed.

The dental bill sounds like a clerical error, not fraud.

 

[Green Tea]

One in 29 Americans is a carrier of the CF gene. Most don't know it. Statistically, of the members on this board, 8100 are carriers. Many times one side of the family is aware of CF, but the other is not. If there had been no cases of the disease, the family wouldn't know. If both parents carry the gene, 25% chance of having CF. 50% chance of carrying the gene. 25% chance of no involvement.

Until a baby is born with CF, many families never know the gene was on their side of the family.

 

[NJMomma]

My hubby was tested after my test came positive (he was negative). We have no family history of CF, the test for CF was part of routine blood work done early in my pregnancy.

As for the cost, I am stunned. I agree w/PP statement about the squeeky wheel. Good luck, fight the good fight!

 

[Tigger1]

We have not even gotten a bill from the hospital that did theblood work, just the insurance showing what they paid. Should we just wait for the hospital to send a bill or ask the hospital why the insurance shows such a high bill?


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