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Permalink Reply by Julie on November 16, 2009 at 11:31am

My blue cross blue sheild is the federal employees program (fep) and because they said they won't cover dmd carrier testing I think I might switch to Independant heath Insurance because they are not a prefered provider of Athena Diagnostics and suposidly if my ins is not a prefered provider I can enroll in their patient protection plan with athena diagnostics and pay ony $1200.

donna,
thanks for the information about athena.

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Permalink Reply by Ofelia Marin on November 16, 2009 at 11:56am

$5000 even for known mutation? This is incredibly high... Mine was done at Univ of Utah (21 months ago) and the cost was $800. It was covered b/c my son was diagnosed part of a newborn screening study, but I did see the price on the papers we had to sign.

Keith Van Houten said:

Actually, I goofed up. Cigna denied us. We have BCBS starting in January. Cigna told us on the phone it was covered, but after they drew the blood, the lab called and said it wasn't covered and would be $5000.

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Permalink Reply by carrie on November 16, 2009 at 1:48pm

I have blue cross/blue shield and they covered the costs with no questions. I wasnt even planning to have more children, rather needed testing since being a carrier can predispose to cardiomyopathy (adult onset). Perhaps you should get you general physician (internist, family practice) to recommend based on potential for cardiomyopathy and ability to prevent/monitor severity with knowledge of predisposition. My situation is a little different than yours since I have a son with DMD, not a brother, but argument should be the same.
Carrie

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Permalink Reply by Phyllis on November 28, 2009 at 4:24pm

Hi Julie

Best of luck with your situation...the onyl thing i can offer you is my son was diagnosed last year at the age of 7. I saw a genetics specialist at USF(university of south florida) He is the youngest of 3 boys and my two other boys are doing fine. No one in our family has had MD. I did get the genetic blood test thru Athena that confirmed it for Kyle. At the time our ins. was Aetna who paid zero towards the testing. Yes it is 5000 dollars...I pay as I can and that is it. It is suggested to get me, my two sons and daughter tested however if i do the math that would be 25 thousand dollARS. So unless something happens in favor of financial help we are not set to get tested..i have to hope that this is a genetic mutation gone wrong with kyle because i would rather spend 25 grand on helping my debilated child than to pay a lab to tell us yes or no..the only time i would do it is really when they are like you and rady to start a family...right now in these times its not even an option...good luck and please if you find out anything different please share it with us...i do feel guilty that the kids arent being tested at this time but i can grow a money tree either...good luck

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Permalink Reply by Janine on November 28, 2009 at 5:10pm

Phyllis,

You did say it was your youngest son that was diagnosed with dmd, right? I'm not sure why anyone would suggest that your other boys be tested. As they are older than Kyle I would think you would be able to tell if they were displaying symptoms. How old are they? I was tested and found to be a carrier, my two daughters have not been tested. I have left it up to them to decide when they want to be tested. They are both aware that they could be carriers.

Janine

Phyllis said:

Hi Julie

Best of luck with your situation...the onyl thing i can offer you is my son was diagnosed last year at the age of 7. I saw a genetics specialist at USF(university of south florida) He is the youngest of 3 boys and my two other boys are doing fine. No one in our family has had MD. I did get the genetic blood test thru Athena that confirmed it for Kyle. At the time our ins. was Aetna who paid zero towards the testing. Yes it is 5000 dollars...I pay as I can and that is it. It is suggested to get me, my two sons and daughter tested however if i do the math that would be 25 thousand dollARS. So unless something happens in favor of financial help we are not set to get tested..i have to hope that this is a genetic mutation gone wrong with kyle because i would rather spend 25 grand on helping my debilated child than to pay a lab to tell us yes or no..the only time i would do it is really when they are like you and rady to start a family...right now in these times its not even an option...good luck and please if you find out anything different please share it with us...i do feel guilty that the kids arent being tested at this time but i can grow a money tree either...good luck

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Permalink Reply by Keith Van Houten on November 28, 2009 at 5:26pm

If you have a documented deletion or duplication in a family member, you can have a less involved test done to determine carrier status that costs $900 through Emory University. Emory is the lab that CCHMC recommended to me.

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Permalink Reply by Karen Barnett on December 27, 2009 at 6:57pm

Keith,
We have BCN. I had my 12yr old daughter tested a month ago at the pediatric genetics clinic at U of M. Daniel's testing was done 4yrs ago through U of M & sent to Baylor. Because Baylor is no longer doing the testing her blood was sent to Ohio State Univ. Just got the statement from BCN this week. Total provider charges were 329.00. Our out of pocket deductable was 65.67. To my relief her test came back as negative as a carrier. Mine was negative as well when I had the testing done right after Daniel's diagnosis.

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Permalink Reply by Donna on December 28, 2009 at 3:28pm

Julie, see my comments on November 16th. I got the information from our doc at the University of Iowa. I do believe yours will be higher due to it being a sibling testing, but it sounds outrageous to be $5,000.

Good luck. Donna

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Permalink Reply by Julie on March 1, 2010 at 3:32pm

I ended up switching Insurance (BCBS to Independent Health) to get the DMD carrier test from Athena Diagnostics. I don't know if my new Insurance has covered the test in full or not but I only had to pay $1200 to enroll in the Patient Protection Plan...so that is the most i will pay for the test.
I recieved the results back last week and I am happy to say that I am not a carrier of DMD.
thanks
Julie

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Permalink Reply by Ofelia Marin on March 1, 2010 at 4:18pm

Congratulations!

Julie said:

I ended up switching Insurance (BCBS to Independent Health) to get the DMD carrier test from Athena Diagnostics. I don't know if my new Insurance has covered the test in full or not but I only had to pay $1200 to enroll in the Patient Protection Plan...so that is the most i will pay for the test.
I recieved the results back last week and I am happy to say that I am not a carrier of DMD.
thanks
Julie

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Permalink Reply by Donna Skibo on March 1, 2010 at 5:19pm

Why would you pay that much? Are you going to University of Utah with Dr Kevin Flanigan? He is a frequent speaker at PPMD conferences. My son's genetic testing was done there & it did not cost that much. I'll try to find his email for you.
Donna Skibo

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Permalink Reply by Donna Skibo on March 1, 2010 at 5:38pm

Here's the information for Dr Flanigan:
Note the phone number at the end. Maybe you can just call and get an idea on the cost.
Donna Skibo


Kevin Flanigan
From Human Genetics Interest Group

Associate Professor of Neurology

Adjunct Associate Professor of Human Genetics and Pathology

Eccles Institute of Human Genetics, Rm 4420

15 N. 2030 East

Salt Lake City, UT 84103

kevin.flanigan@genetics.utah.edu

801/587-9540

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