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DMD Carrier Testing and insurance

My brother had DMD, he passed 7 year ago. My husband and I are planning on starting a family and I wanted to get tested to see if I am a DMD carrier. I went to a Genetic Counselor who recommended I get tested. I guess Athena Diagnostics is the only place who hold a patent for this test. I called my INS BCBS and they said they don't cover genetic screening (i don't really think this is a screening). I had the genetic counselor send them the test information and BCBS still says they won't cover it. BCBS says that I have to get the test and then try to get them to reconsider. Well the test is $5000 and I am concerned with footing the bill.
Does anyone have any experience with getting your ins to pay for Carrier Testing for DMD?
thanks
Julie

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Permalink Reply by Janine on March 1, 2010 at 5:45pm

Donna,

Flanigan is no longer in Utah. He is now in Columbus Ohio at the MDA clinic in Nationwide Childrens Hospital. I assume he most likely does the adult clinic at Ohio State University Hospital as well.

Donna Skibo said:

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 Julie on March 1, 2010 at 9:13pm

I have now already had the test and got the results of not being a carrier.....I had no choice in paying that money.
The MDA association would not help me and my insurance BCBS would not cover any of the test and Athena Diagnostics would not let me enroll in the patient protection plan with BCBS...but they allowed me to enroll when I changed Insurance to Independant Health. My new Insurance authorized the test but I don't know if they will actually pay any of the test..if they pay for the whole test $5000 then I get my $1200 back from Athena...if not then I am out $1200 but at least I now know that I am not a carrier of DMD.

Janine said:

Donna,

Flanigan is no longer in Utah. He is now in Columbus Ohio at the MDA clinic in Nationwide Childrens Hospital. I assume he most likely does the adult clinic at Ohio State University Hospital as well.

Donna Skibo said:
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 Janine on March 2, 2010 at 7:31am

Julie,

That is good news. I'm sure even though you had to pay that much it is good to finally know.

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Permalink Reply by Donna Skibo on March 2, 2010 at 10:34am

Janine:
Thanks for letting me know where Dr. Flanigan is. As I often say, "You think you know something, but everything changes."

Janine said:

Donna,

Flanigan is no longer in Utah. He is now in Columbus Ohio at the MDA clinic in Nationwide Childrens Hospital. I assume he most likely does the adult clinic at Ohio State University Hospital as well.

Donna Skibo said:
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 Michelle on March 2, 2010 at 6:03pm

We have BCBS and the testing for me and my son was covered at 100%. However, the testing was done AFTER I actually had a child who had a suspected DMD diagnosis based on blood test and neuro eval of physical capabilities (at 18 months). My second son, born after we found out, was also tested and fully covered at 100%.

I would highly recommend doing the test even at the cost of $5K out of pocket, in as detailed a manner as possible, b/c if it comes back positive that you're a carrier you have IVF options to avoid DMD. It's called preimplantation genetic diagnosis (PGD) and the fertility clinic can select only those embryos that are unaffected by the disease for implantation. Versus the hundreds of thousands of dollars that DMD will cost you over the lifetime of an affected boy, it may be a small investment to make up front.

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Permalink Reply by Keith Van Houten on March 4, 2010 at 11:34am

If anyone else is having difficulty with insurance and carrier testing, try a different lab. I found that different labs have different insurance codes, and while my insurer wouldn't cover the test at one lab - at another lab with another set of codes - they did.

If you have no insurance, the cheapest place I found is Emory University, who does a carrier test for $900. There's also a discount if you pay in advance. It's not a full sequencing, but adequate if your son has a documented deletion or duplication. Cincinnati recommended this lab and test to me.