Help me find resources

M

mom4holly

New member
Hi, I am new to this site but I have learned so much and find that so many of you have so much knowledge. First thing is that my dr has req my insurance to cover a genetic test for CF and my insurance has denied the request stating that they do not cover genetic testing NO EXCEPTIONS---this has frustrated me beyond belief as my daughter is not a good sweater and this is the only way to get a yes or no answer and I can not afford the test.

My question is this,does anyone know of any way to get assistance with these kinds of tests. I am over the income threshold to qualify for state assistance so they will not help me. Do any of the company that do the test offer financial assistance or maybe a financial payoff program to have the test done?

Any assistance would be great, and please dont be mistaken---my dr is pushing hard but my insurance has denied 2 times already and I have another infant that I am also trying to raise while trying to pay for the meds my dr has put her on for now that my insurance will not give me for the lower copay until we have a CF diagnosis for sure and I am a single mother. Thank you for listening!!!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
M

mom4holly

New member
Hi, I am new to this site but I have learned so much and find that so many of you have so much knowledge. First thing is that my dr has req my insurance to cover a genetic test for CF and my insurance has denied the request stating that they do not cover genetic testing NO EXCEPTIONS---this has frustrated me beyond belief as my daughter is not a good sweater and this is the only way to get a yes or no answer and I can not afford the test.

My question is this,does anyone know of any way to get assistance with these kinds of tests. I am over the income threshold to qualify for state assistance so they will not help me. Do any of the company that do the test offer financial assistance or maybe a financial payoff program to have the test done?

Any assistance would be great, and please dont be mistaken---my dr is pushing hard but my insurance has denied 2 times already and I have another infant that I am also trying to raise while trying to pay for the meds my dr has put her on for now that my insurance will not give me for the lower copay until we have a CF diagnosis for sure and I am a single mother. Thank you for listening!!!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
M

mom4holly

New member
Hi, I am new to this site but I have learned so much and find that so many of you have so much knowledge. First thing is that my dr has req my insurance to cover a genetic test for CF and my insurance has denied the request stating that they do not cover genetic testing NO EXCEPTIONS---this has frustrated me beyond belief as my daughter is not a good sweater and this is the only way to get a yes or no answer and I can not afford the test.

My question is this,does anyone know of any way to get assistance with these kinds of tests. I am over the income threshold to qualify for state assistance so they will not help me. Do any of the company that do the test offer financial assistance or maybe a financial payoff program to have the test done?

Any assistance would be great, and please dont be mistaken---my dr is pushing hard but my insurance has denied 2 times already and I have another infant that I am also trying to raise while trying to pay for the meds my dr has put her on for now that my insurance will not give me for the lower copay until we have a CF diagnosis for sure and I am a single mother. Thank you for listening!!!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
J

JazzysMom

New member
I dont know off hand what to tell you, but I do have a ???. Isnt prenatal &/or newborn screening considered genetic testing? They would deny prenatal testing to an expectant Mom? Just a thought as an avenue to work from. Good Luck!
 
J

JazzysMom

New member
I dont know off hand what to tell you, but I do have a ???. Isnt prenatal &/or newborn screening considered genetic testing? They would deny prenatal testing to an expectant Mom? Just a thought as an avenue to work from. Good Luck!
 
J

JazzysMom

New member
I dont know off hand what to tell you, but I do have a ???. Isnt prenatal &/or newborn screening considered genetic testing? They would deny prenatal testing to an expectant Mom? Just a thought as an avenue to work from. Good Luck!
 
M

Mommafirst

Guest
Gosh, what insurance company do you use? I had absolutely no resistance at all from my company and we did four sweat tests (2 not enough sweats, 2 borderline results), a basic genetic panel, and then the full ambry. Plus genetic bloodwork on my other two kids and myself.

I'd contact Ambry. There is a post on this forum, you can find the phone number or e-mail there. They may be able to tell you what route to go to get it covered, or if they know that that company doesn't cover it, they may be able to point you toward some assistance.

Good luck, insurance companies can be infuriating, especially in a time when you are trying to get a not-so-happy diagnosis.
 
M

Mommafirst

Guest
Gosh, what insurance company do you use? I had absolutely no resistance at all from my company and we did four sweat tests (2 not enough sweats, 2 borderline results), a basic genetic panel, and then the full ambry. Plus genetic bloodwork on my other two kids and myself.

I'd contact Ambry. There is a post on this forum, you can find the phone number or e-mail there. They may be able to tell you what route to go to get it covered, or if they know that that company doesn't cover it, they may be able to point you toward some assistance.

Good luck, insurance companies can be infuriating, especially in a time when you are trying to get a not-so-happy diagnosis.
 
M

Mommafirst

Guest
Gosh, what insurance company do you use? I had absolutely no resistance at all from my company and we did four sweat tests (2 not enough sweats, 2 borderline results), a basic genetic panel, and then the full ambry. Plus genetic bloodwork on my other two kids and myself.

I'd contact Ambry. There is a post on this forum, you can find the phone number or e-mail there. They may be able to tell you what route to go to get it covered, or if they know that that company doesn't cover it, they may be able to point you toward some assistance.

Good luck, insurance companies can be infuriating, especially in a time when you are trying to get a not-so-happy diagnosis.
 
A

Alyssa

New member
Yes, that sounds strange to me to that there are no exceptions -- I can see denying it for screening purposes, but when you are trying to use it for diagnostic purposes it seems like that should be part of the normal stuff.

I second the contact Ambry.

One more suggestion -- find out about the nasal potential test -- it will give you a pretty accurate diagnosis of CF or not, but it is not very pleasant and not available everywhere, but it definitely is not genetic testing so they might go for it. How old is your child?
 
A

Alyssa

New member
Yes, that sounds strange to me to that there are no exceptions -- I can see denying it for screening purposes, but when you are trying to use it for diagnostic purposes it seems like that should be part of the normal stuff.

I second the contact Ambry.

One more suggestion -- find out about the nasal potential test -- it will give you a pretty accurate diagnosis of CF or not, but it is not very pleasant and not available everywhere, but it definitely is not genetic testing so they might go for it. How old is your child?
 
A

Alyssa

New member
Yes, that sounds strange to me to that there are no exceptions -- I can see denying it for screening purposes, but when you are trying to use it for diagnostic purposes it seems like that should be part of the normal stuff.

I second the contact Ambry.

One more suggestion -- find out about the nasal potential test -- it will give you a pretty accurate diagnosis of CF or not, but it is not very pleasant and not available everywhere, but it definitely is not genetic testing so they might go for it. How old is your child?
 
T

thefrogprincess

New member
The nasal potential tesdt isn't THAT bad, you just have to stay still and with a small child that is pretty much impossible. I had it done as part of research study. The put a tiny tube into your sinuses and needle just under your skin (mine was in my upper arm) then they run severall different fluids through the tube and record any changes in electrical activity in the nasal cells.
 
T

thefrogprincess

New member
The nasal potential tesdt isn't THAT bad, you just have to stay still and with a small child that is pretty much impossible. I had it done as part of research study. The put a tiny tube into your sinuses and needle just under your skin (mine was in my upper arm) then they run severall different fluids through the tube and record any changes in electrical activity in the nasal cells.
 
T

thefrogprincess

New member
The nasal potential tesdt isn't THAT bad, you just have to stay still and with a small child that is pretty much impossible. I had it done as part of research study. The put a tiny tube into your sinuses and needle just under your skin (mine was in my upper arm) then they run severall different fluids through the tube and record any changes in electrical activity in the nasal cells.
 
M

mom4holly

New member
I have great west and what sucks the worst is that I work for a pharmacutical benefit company. They dont do the newborn screening for CF in my state unfortunately and when I had my child I qualified fot state assistance so they paid for everything, now I dont. My dr is going to try to contact someone in our hospital to see if they can get me some financial aid. I see the dr in Jacksonville florida in the Nemours childrens clinic and they have been seeing my daughter for several things since infancy which brought up the possibel CF diagnosis.

I am going to try to contact Ambry to see if they can point me in the right direction. Holly is 4 so I am not sure she would coorporate with the Nasal test because it takes 4 people to hold her down to get a shot of anti's (Roceferin) about every other month for her infections so I dont imagine my dr will get that done-but I am for sure going to talk to him about it.

Thank you all for your input!!!!
 
M

mom4holly

New member
I have great west and what sucks the worst is that I work for a pharmacutical benefit company. They dont do the newborn screening for CF in my state unfortunately and when I had my child I qualified fot state assistance so they paid for everything, now I dont. My dr is going to try to contact someone in our hospital to see if they can get me some financial aid. I see the dr in Jacksonville florida in the Nemours childrens clinic and they have been seeing my daughter for several things since infancy which brought up the possibel CF diagnosis.

I am going to try to contact Ambry to see if they can point me in the right direction. Holly is 4 so I am not sure she would coorporate with the Nasal test because it takes 4 people to hold her down to get a shot of anti's (Roceferin) about every other month for her infections so I dont imagine my dr will get that done-but I am for sure going to talk to him about it.

Thank you all for your input!!!!
 
M

mom4holly

New member
I have great west and what sucks the worst is that I work for a pharmacutical benefit company. They dont do the newborn screening for CF in my state unfortunately and when I had my child I qualified fot state assistance so they paid for everything, now I dont. My dr is going to try to contact someone in our hospital to see if they can get me some financial aid. I see the dr in Jacksonville florida in the Nemours childrens clinic and they have been seeing my daughter for several things since infancy which brought up the possibel CF diagnosis.

I am going to try to contact Ambry to see if they can point me in the right direction. Holly is 4 so I am not sure she would coorporate with the Nasal test because it takes 4 people to hold her down to get a shot of anti's (Roceferin) about every other month for her infections so I dont imagine my dr will get that done-but I am for sure going to talk to him about it.

Thank you all for your input!!!!
 
2

2perfectboys

Guest
Mom4Holly
I was looking on Great White's website and they list Genetic testing sites under both PPO and HMO plans, 2 of them actually, the one Genzyme Genetics
(800) 326-7002 , i am pretty sure does CF testing, I would contact them and see if they can work on your behalf with your insurance, also, did u personally get denial letters from your insurance, or did they just deny the dr's request?
 
2

2perfectboys

Guest
Mom4Holly
I was looking on Great White's website and they list Genetic testing sites under both PPO and HMO plans, 2 of them actually, the one Genzyme Genetics
(800) 326-7002 , i am pretty sure does CF testing, I would contact them and see if they can work on your behalf with your insurance, also, did u personally get denial letters from your insurance, or did they just deny the dr's request?
 
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