COST OF C9orf72 TEST

[Atsugi]

According to the rate schedules I've seen online, a blood test to survey for the C9orf72 repeat mutation costs about $260.

I'd like to keep the test out of insurance records, so I'll be paying cash.

Does anyone have any experience paying for the C9 test?

 

[Nikki J]

I had to pay for mine. Insurance would not pay. I paid more but I think the price is going down and I think more than one lab does it now. It would still have to be ordered by a clinician and it would still go into the medical record though. And that raises life disability and longterm care questions. I am not sure they will test minors for this. If you are pursuing this you might want to ask the people you know at Mayo if all the labs that do this are equally reliable now a little while ago it was hinted to me they were not. Pm me if you want

 

[gooseberry]

I would consider asking them to run your test as a john doe or a number that your doctor can link to you but no one else.

 

[Nikki J]

If you know you have some medical issue and purposefully conceal it on applications for life insurance ( and disability or ling term care) if it comes to light it can void the insurance policy. How would they know. It could slip into the medical record if mentioned in the context of a visit. Suppose person tests positive, twenty years later sees doc for a twitch mentions why he is concerned and there it is

 

[nebrhahe53]

Get the policies now when you can truthfully say you know of no issues. You can always discard them later if everything turns out ok which I hope it does.

 

[gooseberry]

I wasn't suggesting atsugi withhold the information if he knew for insurance purposes for himself but, once that is noted in the family history as a mutation in the kids medical records it is a different story. For instance, any pertinent neurologic family history? Yes, mom had als and dad has a mutation on genetic testing. Then if those records are used for life insurance the ramifications could be big. Unless Mike isn't planning on telling his kids the results.

 

[brienw]

When I went to get my gene test (SOD1 and C9orf72) I first had to get a prescription from my neurologist. I am on Medicare. The testing facility (Athena diagnostics) Did not take Medicare, but did discount the tests. initially around $1600, discounted to around $400.

Results:
SOD1-negative
C9orf72-positive

-Brienw

 

[Hope4Me]

Hi -

Could someone define what the C9orf72 test is? I believe I know about the SOD1 gene is but have not read about the C9. If you have this information does it or would it help in future treatments if they ever discover a good treatment?

Thanks
Hope4Me

 

[GregK]

Drop it into a Google search. Many hits.

 

[Nikki J]

C9 is the most common genetic defect in familial ALS ( see the sticky for discussion of FALS) it also occurs in a percentage of sporadic patients and some neuros are offering testing for it. There is no gene specific treatment now but there are some in preclinical development. My family has been waiting for the first clinical trial of antisense therapy for 3 years. They were talking about it as a possibility very shortly after the defect was found.

 

[Hope4Me]

C9 is the most common genetic defect in familial ALS ( see the sticky for discussion of FALS) it also occurs in a percentage of sporadic patients and some neuros are offering testing for it. There is no gene specific treatment now but there are some in preclinical development. My family has been waiting for the first clinical trial of antisense therapy for 3 years. They were talking about it as a possibility very shortly after the defect was found.

Thanks for the explanation Nikki. I'll look it up as well. Just had not heard of it yet.
Hope4Me

 

[hjlindley]

I am also C9 positive I am also. The first one in my family to have it. I have health records going back on my father's side to the 1600s and my mother's side to the early 1800s. They are discovering new genes all the time. What makes C9 different is the number of repeats on the gene that causes proteins to miss fold. If you Google the gene you will find a very good explanation from the NIH. The test is a blood test, and I had the entire panel done but it's very expensive. Good luck!
Hollister