Medical Coverage for CMT Genetic Testing

[Guest guest]

Hi All --

I recently was denied coverage for CMT genetic testing.

Many years ago there was one test that could be done and my insurance

at the time covered it. It came back negative (much to the surprise

of my MD). So now that there are more tests available I have sought

to see about having those done.

The request for coverage as I said was denied by my insurance. I

wrote an appeal and again it was denied, stating that my condition,

upon review by their staff, was stable and the tests were not needed

for treatment.

I don't really understand how they can state that. Given we have no

idea what type of CMT I have, we are basically treating it on guess

work.

In any case I have one other opportunity to appeal the request for

coverage and 90 days in which to do so. If anyone has any advice in

this area it would be greatly appreciated.

Thanks

Cheryl

[Guest guest]

Cheryl,

I had a similar experience. I was told by my neurologist that there

were more types of CMT available for genetic testing, and of course I wanted to

get tested. But my insurance told me they would only cover 1/2 of the test and

it's an expensive test. Years ago as you had stated, it was covered by my

insurance too. Now, since nothing can be done either way with the information

the insurance companies don't think it's not important enough to cover. I

totally understand your frustration. Because if later on down the line

researchers come across a cure for one type of CMT or some type of improvement

for one type none of us will know which type we have because our insurance

companies didn't think it was important enough to find out. Let's pray that

changes. But then again insurance companies are designed to make money off us

not the other way around. It's backwards I know but all we can keep doing

really is challenging their decision. Good luck!

Jane

[Guest guest]

Hi Cheryl,

Do you have a Doctor that could write a letter and back you up? Also

as my neurologist told me, the test could give you important

information on the type and help your family, siblings, children etc.

as I know,you are already aware of. My test revealed that my son

won't have CMT because mine is a recessive type. You can't put a

price on that.

Gigi

[Guest guest]

Hi Cheryl,

If you are getting in done through Athena Diagnostics they offer a program to

help patients pay for the testing. Athena called me and told me what the costs

would be before then ran the tests and I had to sign a form that I understood

the costs, etc. I believe at the time there was a program where I could only be

responsible for 20% of the total cost if my insurance didn't cover it. Here is

the site www.athenadiagnostics.com. I found Athena to be very helpful when I

spoke to them.

Depending on what tests they are running they can be very expensive. My son's

total cost was $9,000+ but he had the complete testing done - I was fortunate

that my insurance covered most of it. I was able to set up a payment plan for

the amount I did owe.

Is there someone in your company that handles insurance issues (usually HR) that

can help you? I've found out over the years that there are ways around these

things that employees aren't always made aware of.

Good luck

Carmella