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Gene Testing

B

blondelawyer

New member
My husband has CF, definitely not a question about that. He had a genetic test done in 1997, which showed dF508 and then an unknown mutation. I know that there have been so many more mutations discovered so they might be able to "find" it if they looked again. My question is whether this is something that we should do. The only real reason that I can think of is that there are some drugs in the pipeline that only effect specific types of mutations. So, that seems like it would be a good reason to get it. But the treatments, etc., would be the same, so is it just a waste of money to get it (unless/until these drugs do come out)? And will it be a struggle with the insurance company to get it covered?

Thoughts???
 
B

blondelawyer

New member
My husband has CF, definitely not a question about that. He had a genetic test done in 1997, which showed dF508 and then an unknown mutation. I know that there have been so many more mutations discovered so they might be able to "find" it if they looked again. My question is whether this is something that we should do. The only real reason that I can think of is that there are some drugs in the pipeline that only effect specific types of mutations. So, that seems like it would be a good reason to get it. But the treatments, etc., would be the same, so is it just a waste of money to get it (unless/until these drugs do come out)? And will it be a struggle with the insurance company to get it covered?

Thoughts???
 
B

blondelawyer

New member
My husband has CF, definitely not a question about that. He had a genetic test done in 1997, which showed dF508 and then an unknown mutation. I know that there have been so many more mutations discovered so they might be able to "find" it if they looked again. My question is whether this is something that we should do. The only real reason that I can think of is that there are some drugs in the pipeline that only effect specific types of mutations. So, that seems like it would be a good reason to get it. But the treatments, etc., would be the same, so is it just a waste of money to get it (unless/until these drugs do come out)? And will it be a struggle with the insurance company to get it covered?

Thoughts???
 
B

blondelawyer

New member
My husband has CF, definitely not a question about that. He had a genetic test done in 1997, which showed dF508 and then an unknown mutation. I know that there have been so many more mutations discovered so they might be able to "find" it if they looked again. My question is whether this is something that we should do. The only real reason that I can think of is that there are some drugs in the pipeline that only effect specific types of mutations. So, that seems like it would be a good reason to get it. But the treatments, etc., would be the same, so is it just a waste of money to get it (unless/until these drugs do come out)? And will it be a struggle with the insurance company to get it covered?

Thoughts???
 
B

blondelawyer

New member
My husband has CF, definitely not a question about that. He had a genetic test done in 1997, which showed dF508 and then an unknown mutation. I know that there have been so many more mutations discovered so they might be able to "find" it if they looked again. My question is whether this is something that we should do. The only real reason that I can think of is that there are some drugs in the pipeline that only effect specific types of mutations. So, that seems like it would be a good reason to get it. But the treatments, etc., would be the same, so is it just a waste of money to get it (unless/until these drugs do come out)? And will it be a struggle with the insurance company to get it covered?

Thoughts???
 
B

blondelawyer

New member
My husband has CF, definitely not a question about that. He had a genetic test done in 1997, which showed dF508 and then an unknown mutation. I know that there have been so many more mutations discovered so they might be able to "find" it if they looked again. My question is whether this is something that we should do. The only real reason that I can think of is that there are some drugs in the pipeline that only effect specific types of mutations. So, that seems like it would be a good reason to get it. But the treatments, etc., would be the same, so is it just a waste of money to get it (unless/until these drugs do come out)? And will it be a struggle with the insurance company to get it covered?

Thoughts???
 
J

JazzysMom

New member
IF you can get it covered by insurance with little or no out of pocket.....why not? IMHO knowing your mutations is like knowing your blood type. You just never know when that info might come in handy. If you dont feel its worth it at this time & the insurance doesnt cover it then wait..........
 
J

JazzysMom

New member
IF you can get it covered by insurance with little or no out of pocket.....why not? IMHO knowing your mutations is like knowing your blood type. You just never know when that info might come in handy. If you dont feel its worth it at this time & the insurance doesnt cover it then wait..........
 
J

JazzysMom

New member
IF you can get it covered by insurance with little or no out of pocket.....why not? IMHO knowing your mutations is like knowing your blood type. You just never know when that info might come in handy. If you dont feel its worth it at this time & the insurance doesnt cover it then wait..........
 
J

JazzysMom

New member
IF you can get it covered by insurance with little or no out of pocket.....why not? IMHO knowing your mutations is like knowing your blood type. You just never know when that info might come in handy. If you dont feel its worth it at this time & the insurance doesnt cover it then wait..........
 
J

JazzysMom

New member
IF you can get it covered by insurance with little or no out of pocket.....why not? IMHO knowing your mutations is like knowing your blood type. You just never know when that info might come in handy. If you dont feel its worth it at this time & the insurance doesnt cover it then wait..........
 
J

JazzysMom

New member
IF you can get it covered by insurance with little or no out of pocket.....why not? IMHO knowing your mutations is like knowing your blood type. You just never know when that info might come in handy. If you dont feel its worth it at this time & the insurance doesnt cover it then wait..........
 
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