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#5036 - 07/10/06 02:28 AM Genetic testing
wonderboy Offline
Member

Registered: 07/02/06
Posts: 45
Loc: Orem, Utah USA
We are starting the process of getting genetic testing and chromosome testing done and paid for. Any suggestions on where to start and who to get help with the referral letters and the appeals process?

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Kerry
Mason's Mom
Lamellar Ichthyosis
5/9/2004
_________________________
Kerry
Mason (3 years old) smile
Lamellar Ichthyosis

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#5037 - 07/10/06 03:24 AM Re: Genetic testing
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Your doctor may have to write a letter to explain the medical necessity of having testing done. For us, we had to have the doctor provide a case history and a letter of medical necessity. The review process took 3 days to 2 weeks.

We had the testing done 2 years ago. At the time, GeneDX cost about $400 per gene to test just the hot spots - the areas most likely to have a mutation. It we wanted the entire gene sequenced, it would have been about $1200. I wouldn't be surprised if the cost has gone up now.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#5038 - 07/13/06 05:47 PM Re: Genetic testing
Anonymous
Unregistered


AFTER MY DAUGHTER WAS BORN, THEY TOOK BLOOD TO DO SOME TESTING. THEY COULDNT REALLY PIN POINT ALL THE GENES. THEY SAID THE TYPE SHE HAS IS CLOSE TO LLAMEAR BUT ALL THE PICS IVE SEEN, SHE DONT LOOK LIKE THAT. SO NOW IF I WANTED TO GET FURTHER TESTING DONE I THINK IT WOULD COST A FORTUNE.. THE DR SAID ITS IT WOULD ONLY B WORTH IT IF I WAS GOING TO HAVE MORE CHILDREN.

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#5039 - 07/14/06 07:28 PM Re: Genetic testing
dpatock Offline
Member

Registered: 01/31/05
Posts: 44
Loc: Sacramento, CA
I recommend you start with your insurance company. Our insurance would only approve it as a pre-authorized expense (in other words, we needed to get authorization from insurance before we could get them to pay for it). I wrote them, and called them...my doctor did too, and got it pre-approved. I think GeneDX is one of the few places that does testing for ichthyosis. It cost us ~$3K to have the testing done on our daughter, me and my husband (to make sure we are carriers). And then I recently had genetic testing on the baby i am carrying (I am 6 months pregnant). That test was $1500, and was also covered through insurance. If they don't approve it, just keep at them. Most insurance companies will approve it as it is needed for treatment options and to ensure/plan for future births.

Good luck!

-Darcie
(daughter Lily has Lamellar)

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#5040 - 07/17/06 11:37 PM Re: Genetic testing
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
We had our daughter tested for Netherton's, as well as a variety of other genetic disorders when we weren't sure what was "wrong" with her, and our insurance covered. I actually don't even think we had to get authorization, our derm. just sent the tests out, and GeneDX (at the conference, I met the woman who actually looked at Julia's DNA and determined it was NS, how cool is that? lol) billed our insurance company.
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Courtney
Mom to Julia

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