am I crazy, how can this make sense

CJsmom · Jun 9, 2008

I apologize in advance but this might be a bit of a vent. as I've said in other posts, my son has several symptoms of CF.
Heres my problem, the docs office (CF Care Center) said he was fine with my son having the genetic testing done. The nurse at the Center called me today to send me the paperwork and I asked which screening would be done. She said it would be a test for 23 mutations done in-house. I requested that he have the full screening done and she said she would get an ok from the doc and let me know. She called back and said it was fine, he approved the full sequence testing. When I asked her if it was Ambry's full sequence or Quest's amplified testing she said she wasn't familiar with either of those but that the lab would send it and results would be in within 3 weeks. From what I have read here, the results take longer than 3 weeks and how is it possible that the MAIN nurse in a CF Care Center has never ever heard of Ambrey or Quest??
Needless to say, I had to call the insurance company for approval and the insurance will only cover the testing if it is deemed 'medically necessary'. They won't cover it to rule out a diagnosis or to see if he is, at minimum, a carrier.
What can I do, should I take him to another care center (travel would be 2-3 hours) should I just have them test him for the 23 mutations? I'm so confused now and unsure of how to proceed.
Keep in mind, this doc at the center downright refused to believe my sons uncle (who has atypical cf) has a correct diagnosis.
I'm just at a total loss here.

CJsmom · Jun 9, 2008

I apologize in advance but this might be a bit of a vent. as I've said in other posts, my son has several symptoms of CF.
Heres my problem, the docs office (CF Care Center) said he was fine with my son having the genetic testing done. The nurse at the Center called me today to send me the paperwork and I asked which screening would be done. She said it would be a test for 23 mutations done in-house. I requested that he have the full screening done and she said she would get an ok from the doc and let me know. She called back and said it was fine, he approved the full sequence testing. When I asked her if it was Ambry's full sequence or Quest's amplified testing she said she wasn't familiar with either of those but that the lab would send it and results would be in within 3 weeks. From what I have read here, the results take longer than 3 weeks and how is it possible that the MAIN nurse in a CF Care Center has never ever heard of Ambrey or Quest??
Needless to say, I had to call the insurance company for approval and the insurance will only cover the testing if it is deemed 'medically necessary'. They won't cover it to rule out a diagnosis or to see if he is, at minimum, a carrier.
What can I do, should I take him to another care center (travel would be 2-3 hours) should I just have them test him for the 23 mutations? I'm so confused now and unsure of how to proceed.
Keep in mind, this doc at the center downright refused to believe my sons uncle (who has atypical cf) has a correct diagnosis.
I'm just at a total loss here.

CJsmom · Jun 9, 2008

I apologize in advance but this might be a bit of a vent. as I've said in other posts, my son has several symptoms of CF.
Heres my problem, the docs office (CF Care Center) said he was fine with my son having the genetic testing done. The nurse at the Center called me today to send me the paperwork and I asked which screening would be done. She said it would be a test for 23 mutations done in-house. I requested that he have the full screening done and she said she would get an ok from the doc and let me know. She called back and said it was fine, he approved the full sequence testing. When I asked her if it was Ambry's full sequence or Quest's amplified testing she said she wasn't familiar with either of those but that the lab would send it and results would be in within 3 weeks. From what I have read here, the results take longer than 3 weeks and how is it possible that the MAIN nurse in a CF Care Center has never ever heard of Ambrey or Quest??
Needless to say, I had to call the insurance company for approval and the insurance will only cover the testing if it is deemed 'medically necessary'. They won't cover it to rule out a diagnosis or to see if he is, at minimum, a carrier.
What can I do, should I take him to another care center (travel would be 2-3 hours) should I just have them test him for the 23 mutations? I'm so confused now and unsure of how to proceed.
Keep in mind, this doc at the center downright refused to believe my sons uncle (who has atypical cf) has a correct diagnosis.
I'm just at a total loss here.

CJsmom · Jun 9, 2008

I apologize in advance but this might be a bit of a vent. as I've said in other posts, my son has several symptoms of CF.
Heres my problem, the docs office (CF Care Center) said he was fine with my son having the genetic testing done. The nurse at the Center called me today to send me the paperwork and I asked which screening would be done. She said it would be a test for 23 mutations done in-house. I requested that he have the full screening done and she said she would get an ok from the doc and let me know. She called back and said it was fine, he approved the full sequence testing. When I asked her if it was Ambry's full sequence or Quest's amplified testing she said she wasn't familiar with either of those but that the lab would send it and results would be in within 3 weeks. From what I have read here, the results take longer than 3 weeks and how is it possible that the MAIN nurse in a CF Care Center has never ever heard of Ambrey or Quest??
Needless to say, I had to call the insurance company for approval and the insurance will only cover the testing if it is deemed 'medically necessary'. They won't cover it to rule out a diagnosis or to see if he is, at minimum, a carrier.
What can I do, should I take him to another care center (travel would be 2-3 hours) should I just have them test him for the 23 mutations? I'm so confused now and unsure of how to proceed.
Keep in mind, this doc at the center downright refused to believe my sons uncle (who has atypical cf) has a correct diagnosis.
I'm just at a total loss here.

CJsmom · Jun 9, 2008

I apologize in advance but this might be a bit of a vent. as I've said in other posts, my son has several symptoms of CF.
 Heres my problem, the docs office (CF Care Center) said he was fine with my son having the genetic testing done. The nurse at the Center called me today to send me the paperwork and I asked which screening would be done. She said it would be a test for 23 mutations done in-house. I requested that he have the full screening done and she said she would get an ok from the doc and let me know. She called back and said it was fine, he approved the full sequence testing. When I asked her if it was Ambry's full sequence or Quest's amplified testing she said she wasn't familiar with either of those but that the lab would send it and results would be in within 3 weeks. From what I have read here, the results take longer than 3 weeks and how is it possible that the MAIN nurse in a CF Care Center has never ever heard of Ambrey or Quest??
 Needless to say, I had to call the insurance company for approval and the insurance will only cover the testing if it is deemed 'medically necessary'. They won't cover it to rule out a diagnosis or to see if he is, at minimum, a carrier.
 What can I do, should I take him to another care center (travel would be 2-3 hours) should I just have them test him for the 23 mutations? I'm so confused now and unsure of how to proceed.
 Keep in mind, this doc at the center downright refused to believe my sons uncle (who has atypical cf) has a correct diagnosis.
 I'm just at a total loss here.

Alyssa · Jun 9, 2008

Is the doctor willing to state that it is medically necessary?

I don't think there is anywhere else they would be sending full sequencing anyway, so I'm assuming the nurse had just never really been in the loop on the names of the labs. Yeah, she also might be a little optimistic on the three weeks -- but I think they usually say 3-6 weeks.

Here's what I'd lean towards.... if this doctor has already said he will order the full testing, and he is willing to deem it medically necessary so that insurance will pay for it, I'd move forward with this doctor and clinic for now.

If he will not tell the insurance company it is medically necessary, take the in house 23 mutation test now, but start making your plans to go to another clinic to ask for full sequencing.

Best of luck!

Alyssa · Jun 9, 2008

Is the doctor willing to state that it is medically necessary?

I don't think there is anywhere else they would be sending full sequencing anyway, so I'm assuming the nurse had just never really been in the loop on the names of the labs. Yeah, she also might be a little optimistic on the three weeks -- but I think they usually say 3-6 weeks.

Here's what I'd lean towards.... if this doctor has already said he will order the full testing, and he is willing to deem it medically necessary so that insurance will pay for it, I'd move forward with this doctor and clinic for now.

If he will not tell the insurance company it is medically necessary, take the in house 23 mutation test now, but start making your plans to go to another clinic to ask for full sequencing.

Best of luck!

Alyssa · Jun 9, 2008

Is the doctor willing to state that it is medically necessary?

I don't think there is anywhere else they would be sending full sequencing anyway, so I'm assuming the nurse had just never really been in the loop on the names of the labs. Yeah, she also might be a little optimistic on the three weeks -- but I think they usually say 3-6 weeks.

Here's what I'd lean towards.... if this doctor has already said he will order the full testing, and he is willing to deem it medically necessary so that insurance will pay for it, I'd move forward with this doctor and clinic for now.

If he will not tell the insurance company it is medically necessary, take the in house 23 mutation test now, but start making your plans to go to another clinic to ask for full sequencing.

Best of luck!

Alyssa · Jun 9, 2008

Is the doctor willing to state that it is medically necessary?

I don't think there is anywhere else they would be sending full sequencing anyway, so I'm assuming the nurse had just never really been in the loop on the names of the labs. Yeah, she also might be a little optimistic on the three weeks -- but I think they usually say 3-6 weeks.

Here's what I'd lean towards.... if this doctor has already said he will order the full testing, and he is willing to deem it medically necessary so that insurance will pay for it, I'd move forward with this doctor and clinic for now.

If he will not tell the insurance company it is medically necessary, take the in house 23 mutation test now, but start making your plans to go to another clinic to ask for full sequencing.

Best of luck!

Alyssa · Jun 9, 2008

Is the doctor willing to state that it is medically necessary?
 
 I don't think there is anywhere else they would be sending full sequencing anyway, so I'm assuming the nurse had just never really been in the loop on the names of the labs. Yeah, she also might be a little optimistic on the three weeks -- but I think they usually say 3-6 weeks.
 
 Here's what I'd lean towards.... if this doctor has already said he will order the full testing, and he is willing to deem it medically necessary so that insurance will pay for it, I'd move forward with this doctor and clinic for now.
 
 If he will not tell the insurance company it is medically necessary, take the in house 23 mutation test now, but start making your plans to go to another clinic to ask for full sequencing.
 
 Best of luck!

Buckeye · Jun 9, 2008

Be aware that if you go to a new CF clinic they will most likely start the whole process over again. He'd probably have to do a new physical, new sweat test and everything before they approve the genetic testing, so it may be the quicker route to just finish up at the clinic you're at.If the nurse said that the doctor approved full sequencing then I would hold her to it even if she has no idea what that means. You can go to the Ambry website and I believe there is a form you can print that tells them how to collect it and where to send it etc. Also a lot of insurance companies won't cover the Ambry test for the first genetic test, they prefer to do the basic genetic test first and then if nothing is found go on to the other test - the basic genetic test is a lot cheaper than the full blown test so I think they figure why pay for the high priced one if the mutation may be found on the lower priced one.And the clinic should be the one getting approval from the insurance company, not you - make them work for their money. I know with our insurance if it wasn't for the nurse at the cf clinic explaining the test in great detail to them we never would have gotten it approved.

Buckeye · Jun 9, 2008

Be aware that if you go to a new CF clinic they will most likely start the whole process over again. He'd probably have to do a new physical, new sweat test and everything before they approve the genetic testing, so it may be the quicker route to just finish up at the clinic you're at.If the nurse said that the doctor approved full sequencing then I would hold her to it even if she has no idea what that means. You can go to the Ambry website and I believe there is a form you can print that tells them how to collect it and where to send it etc. Also a lot of insurance companies won't cover the Ambry test for the first genetic test, they prefer to do the basic genetic test first and then if nothing is found go on to the other test - the basic genetic test is a lot cheaper than the full blown test so I think they figure why pay for the high priced one if the mutation may be found on the lower priced one.And the clinic should be the one getting approval from the insurance company, not you - make them work for their money. I know with our insurance if it wasn't for the nurse at the cf clinic explaining the test in great detail to them we never would have gotten it approved.

Buckeye · Jun 9, 2008

Be aware that if you go to a new CF clinic they will most likely start the whole process over again. He'd probably have to do a new physical, new sweat test and everything before they approve the genetic testing, so it may be the quicker route to just finish up at the clinic you're at.If the nurse said that the doctor approved full sequencing then I would hold her to it even if she has no idea what that means. You can go to the Ambry website and I believe there is a form you can print that tells them how to collect it and where to send it etc. Also a lot of insurance companies won't cover the Ambry test for the first genetic test, they prefer to do the basic genetic test first and then if nothing is found go on to the other test - the basic genetic test is a lot cheaper than the full blown test so I think they figure why pay for the high priced one if the mutation may be found on the lower priced one.And the clinic should be the one getting approval from the insurance company, not you - make them work for their money. I know with our insurance if it wasn't for the nurse at the cf clinic explaining the test in great detail to them we never would have gotten it approved.

Buckeye · Jun 9, 2008

Be aware that if you go to a new CF clinic they will most likely start the whole process over again. He'd probably have to do a new physical, new sweat test and everything before they approve the genetic testing, so it may be the quicker route to just finish up at the clinic you're at.If the nurse said that the doctor approved full sequencing then I would hold her to it even if she has no idea what that means. You can go to the Ambry website and I believe there is a form you can print that tells them how to collect it and where to send it etc. Also a lot of insurance companies won't cover the Ambry test for the first genetic test, they prefer to do the basic genetic test first and then if nothing is found go on to the other test - the basic genetic test is a lot cheaper than the full blown test so I think they figure why pay for the high priced one if the mutation may be found on the lower priced one.And the clinic should be the one getting approval from the insurance company, not you - make them work for their money. I know with our insurance if it wasn't for the nurse at the cf clinic explaining the test in great detail to them we never would have gotten it approved.

Buckeye · Jun 9, 2008

Be aware that if you go to a new CF clinic they will most likely start the whole process over again. He'd probably have to do a new physical, new sweat test and everything before they approve the genetic testing, so it may be the quicker route to just finish up at the clinic you're at.If the nurse said that the doctor approved full sequencing then I would hold her to it even if she has no idea what that means. You can go to the Ambry website and I believe there is a form you can print that tells them how to collect it and where to send it etc. Also a lot of insurance companies won't cover the Ambry test for the first genetic test, they prefer to do the basic genetic test first and then if nothing is found go on to the other test - the basic genetic test is a lot cheaper than the full blown test so I think they figure why pay for the high priced one if the mutation may be found on the lower priced one.And the clinic should be the one getting approval from the insurance company, not you - make them work for their money. I know with our insurance if it wasn't for the nurse at the cf clinic explaining the test in great detail to them we never would have gotten it approved.

CJsmom · Jun 9, 2008

thanks for your replies. The insurance co said they won't cover ANY genetic testing unless it is deemed medically necessary. I am willing (if I absolutely have to) to pay for the 23 mutation testing out of pocket but I certainly cannot afford the full testing.
Also, we have only met with this doc 1 time for a consult and he really brushed us off and made us feel like we were wasting his time. He made it very clear to me that he feels CF is pretty cut and dry, either you have and all the symptoms or you don't, there is and I quote him 'nothing atypical about CF. Its a very classic disease'
I'll have to call them back tomorrow and see if he will deem it medically necessary. The insurance is sending me the checklist he has to fill out and sign for them to approve. I really think he said he would approve it just to get me out of his office.

CJsmom · Jun 9, 2008

thanks for your replies. The insurance co said they won't cover ANY genetic testing unless it is deemed medically necessary. I am willing (if I absolutely have to) to pay for the 23 mutation testing out of pocket but I certainly cannot afford the full testing.
Also, we have only met with this doc 1 time for a consult and he really brushed us off and made us feel like we were wasting his time. He made it very clear to me that he feels CF is pretty cut and dry, either you have and all the symptoms or you don't, there is and I quote him 'nothing atypical about CF. Its a very classic disease'
I'll have to call them back tomorrow and see if he will deem it medically necessary. The insurance is sending me the checklist he has to fill out and sign for them to approve. I really think he said he would approve it just to get me out of his office.

CJsmom · Jun 9, 2008

thanks for your replies. The insurance co said they won't cover ANY genetic testing unless it is deemed medically necessary. I am willing (if I absolutely have to) to pay for the 23 mutation testing out of pocket but I certainly cannot afford the full testing.
Also, we have only met with this doc 1 time for a consult and he really brushed us off and made us feel like we were wasting his time. He made it very clear to me that he feels CF is pretty cut and dry, either you have and all the symptoms or you don't, there is and I quote him 'nothing atypical about CF. Its a very classic disease'
I'll have to call them back tomorrow and see if he will deem it medically necessary. The insurance is sending me the checklist he has to fill out and sign for them to approve. I really think he said he would approve it just to get me out of his office.

CJsmom · Jun 9, 2008

thanks for your replies. The insurance co said they won't cover ANY genetic testing unless it is deemed medically necessary. I am willing (if I absolutely have to) to pay for the 23 mutation testing out of pocket but I certainly cannot afford the full testing.
Also, we have only met with this doc 1 time for a consult and he really brushed us off and made us feel like we were wasting his time. He made it very clear to me that he feels CF is pretty cut and dry, either you have and all the symptoms or you don't, there is and I quote him 'nothing atypical about CF. Its a very classic disease'
I'll have to call them back tomorrow and see if he will deem it medically necessary. The insurance is sending me the checklist he has to fill out and sign for them to approve. I really think he said he would approve it just to get me out of his office.

CJsmom · Jun 9, 2008

thanks for your replies. The insurance co said they won't cover ANY genetic testing unless it is deemed medically necessary. I am willing (if I absolutely have to) to pay for the 23 mutation testing out of pocket but I certainly cannot afford the full testing.
 Also, we have only met with this doc 1 time for a consult and he really brushed us off and made us feel like we were wasting his time. He made it very clear to me that he feels CF is pretty cut and dry, either you have and all the symptoms or you don't, there is and I quote him 'nothing atypical about CF. Its a very classic disease'
 I'll have to call them back tomorrow and see if he will deem it medically necessary. The insurance is sending me the checklist he has to fill out and sign for them to approve. I really think he said he would approve it just to get me out of his office.

am I crazy, how can this make sense

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