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Post by meaniejean on Feb 3, 2009 11:56:01 GMT -5
Hi all.
So, we found out yesterday that our insurance will not cover genetic testing for diagnostic purposes. So, I guess we are going to have to go with a liver biopsy. Anyone have any comments or advice? I think I will try to have it done and then maybe the kids won't have to do it. This is so frustrating.
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Post by colormist on Feb 3, 2009 12:03:25 GMT -5
That's SO RIDICULOUS. The test cost $100 in the US. A liver biopsy has to cost 10x that amount!! *throttles your insurance company*
I do think I recall they said they sent off the bloodwork under the covert disguise of hypoglycemia so that insurance would cover it. And they suggested I have my mom do the test under the same guise so that her insurance would cover it. Maybe if you have a nice, sneaky doctor they would try this for you? :\
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Post by meaniejean on Feb 3, 2009 12:26:16 GMT -5
Thanks, Colormist. I know, isn't that absolutely crazy. They said that they will cover genetic testing if it is to direct treatment, but not for diagnosis. So, maybe if the diagnosis is hypoglycemia and the genetic test is to figure out how to treat it (i.e. - stay away from fructose!) then maybe that could work. Thanks for the suggestion!
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Post by julienc on Feb 3, 2009 13:04:12 GMT -5
Wow, that is CRAZY!!! I would definitely find a way to work it through the system. The hypoglycemia is a good route, and perfectly legitimate.
For what it's worth, I would rather pay for Dr. Tolan's genetic test out of my own pocket than go through a biopsy. I think you pay just once, and then all family members are covered if the diagnosis is positive. His website has the details. I discussed the biopsy route with my doc, and it sounded like a fairly serious procedure - fairly painful as well.
Good luck.
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Post by meaniejean on Feb 3, 2009 15:00:30 GMT -5
Julienc -
I would absolutely love to just do Dr. Tolan's test, but unfortunately we really can't afford it. I know that others in my family would want to be tested later if it was positive, but if it was negative, we would be stuck with the whole bill.
Fred-
Thank you for the info on the biopsy. If we can get a firm diagnosis, it would be worth it. We really need to find out what is going on here. I wrote in another thread recently that I found out my grandmother passed away due to some sort of liver failure/disorder. Then my dad tells me yesterday that his brother had a liver biopsy done at one point and he doesn't know why or what came of it. I have been talking about HFI with my family for awhile now, and this is the first I hear of these things!
I am assuming that if this is liver related that they would be able to tell from the biopsy? - whereas if I did the genetic test it would only be looking at HFI.
Anyway, my doc is referring me to a GI doc so that we can get this figured out.
Just keeping my fingers crossed still that there is nothing else going on besides fructose issues.
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Post by julienc on Feb 4, 2009 12:12:35 GMT -5
I definitely understand the cost thing.
As Fred says, the good thing about the biopsy is that it gives a solid diagnosis. I imagine they can check out other things, too. The DNA testing is sometimes a bit iffy since not all mutations have been identified.
Good luck.
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Post by flutterby on Feb 12, 2009 12:49:06 GMT -5
Are you saying that insurance won't cover the biopsy? Matthew has one more blood test left before they are going to do the biopsy. I think the next blood test is on the 20th and then if his liver levels are still abnormal (which I assume they will be) then we will schedule the biopsy.
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Post by meaniejean on Feb 12, 2009 15:43:17 GMT -5
No - I think they will cover a biopsy, but not a genetic blood test. Not sure of the reasoning on that ...
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