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Permalink Reply by Veronica E. on November 11, 2009 at 2:58pm

We have BCBS insurance, and my carrier testing, as well as Max's testing, was covered at 100%. I was told at one point that insurance companies probably want people to be tested (and, in turn, cover the cost of testing) since covering someone with Duchenne is so expensive, and they hope a positive test result would keep the individual from having a baby. (Sounds cold, I know, but I think that's the reality.) I actually didn't have to fight at all or even write one letter. I wish I had some advice ...

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Permalink Reply by Jennifer Shumsky on November 11, 2009 at 5:43pm

I would check with your local MDA office to see if they would cover the cost for you. If they would cover the cost to have me and my daughter and my sister tested I don't see why it would be different for you as an adult sibling of a DMD man that has passed (and I'm sorry for your loss :( )
Good Luck

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Permalink Reply by Julie on November 11, 2009 at 5:54pm

Thanks Jen...I will try to get some more info from the mda office

Jennifer Shumsky said:

I would check with your local MDA office to see if they would cover the cost for you. If they would cover the cost to have me and my daughter and my sister tested I don't see why it would be different for you as an adult sibling of a DMD man that has passed (and I'm sorry for your loss :( )
Good Luck

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Permalink Reply by Linda Bailey on November 13, 2009 at 10:11am

If they know where your brother's mutation was that should simplify the testing, they would just look there for you. Was your mother a carrier? Our daughter-in-law was tested after they located the marker on her son (our grandson) and the test (screening) for her was rather simple then, at least in the explanation and their insurance covered it.

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Permalink Reply by Jerry Dallapè on November 13, 2009 at 11:47pm

Yes, the mutation specific test is much less expensive. I also have BCBS (of NJ) and they covered 100%.

Linda Bailey said:

If they know where your brother's mutation was that should simplify the testing, they would just look there for you. Was your mother a carrier? Our daughter-in-law was tested after they located the marker on her son (our grandson) and the test (screening) for her was rather simple then, at least in the explanation and their insurance covered it.

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Permalink Reply by Julie on November 14, 2009 at 2:22am

We don't know my brothers mutation and they only did a partial test on my mom...the results on my mom's test state "no evidence of a deletion, duplication, or other structural abnormality was detected in the dmd gene, bayesian analysis cannot be performed as no clinical information was provided analysis for dmd gene point mutations is recommended for individuals with a documented family history of dmd who have tested negative for deletion/duplication mutations. Genetic counseling is recommended"

My moms dr is un educated in these matters clearly because all they did is fax her these results and didn't recommend her to continue the test.

I take this to mean they only did the first part of the test. when I went to my genetic counselor they said it was a two part test and the second part was point mutations.
te>Jerry Dallapè said:

Yes, the mutation specific test is much less expensive. I also have BCBS (of NJ) and they covered 100%.

Linda Bailey said:

If they know where your brother's mutation was that should simplify the testing, they would just look there for you. Was your mother a carrier? Our daughter-in-law was tested after they located the marker on her son (our grandson) and the test (screening) for her was rather simple then, at least in the explanation and their insurance covered it.

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Permalink Reply by Ofelia Marin on November 15, 2009 at 9:25am

The good news is that they can do the test even if you do not know the location of the mutation. It is quite complex since they need to sequence the entire gene on the two X chromosomes. I think you need make the point that it is a lot cheaper for the insurance to pay for the test then to pay for a DMD boy! It should be a way to convince them that you need to do your best to avoid giving birth to another boy with DMD (fatal disease, very high price of care etc.) when you know that the chances are high b/c of your family history.

Julie said:

We don't know my brothers mutation and they only did a partial test on my mom...the results on my mom's test state "no evidence of a deletion, duplication, or other structural abnormality was detected in the dmd gene, bayesian analysis cannot be performed as no clinical information was provided analysis for dmd gene point mutations is recommended for individuals with a documented family history of dmd who have tested negative for deletion/duplication mutations. Genetic counseling is recommended"

My moms dr is un educated in these matters clearly because all they did is fax her these results and didn't recommend her to continue the test.

I take this to mean they only did the first part of the test. when I went to my genetic counselor they said it was a two part test and the second part was point mutations.
te>Jerry Dallapè said:

Yes, the mutation specific test is much less expensive. I also have BCBS (of NJ) and they covered 100%.

Linda Bailey said:

If they know where your brother's mutation was that should simplify the testing, they would just look there for you. Was your mother a carrier? Our daughter-in-law was tested after they located the marker on her son (our grandson) and the test (screening) for her was rather simple then, at least in the explanation and their insurance covered it.

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Permalink Reply by sheela mary on November 16, 2009 at 1:58am

hello mam,
my brother also had DMD. i m dng my research regarding this .if u r brother is younger to u,is that no problem at all.othewise if he is ur elder brother u r going to take dna testing.

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Permalink Reply by Donna on November 16, 2009 at 9:29am

I put your question out to the clinic that we go to and here's what I got back - :

"Your (mine - ie. mother carrier testing) testing was done before Athena exerted it’s patent rights. There continue to be a few labs in Western USA doing DMD testing (for males and carriers), but Athena is working towards closing them down. They would like to have a monopoly on the testing, so there is no competition for what they charge. Dr. Mathews (Univ of Iowa Nueromuscular Pediatrician/Kyle's doctor) has testified to Congress about anti-trust issues and held a conference at UIHC about how this type of company can negatively impact gene discovery and better understanding of the gene…Athena is in the gene testing business to make money. Academic centers who were doing testing were always improving the test, researching and publishing about the genes and training others to work on these genes. They were not in it to make money, but were part of teaching hospitals where patients are cared for.

At Athena and academic centers, if the gene mutation is known in the affected male, the cost of testing the females to determine carrier status is greatly reduced. If the genetic testing includes deletion, duplication and point mutation testing in the first person to be tested, it will likely be at least $5000 at Athena. We are still using Utah, which is about $2300 for all tests. If the female is having carrier testing and the male sibling’s mutation is NOT known, she would pay this large price. If the male mutation is known, Athena and academic centers have a lesser charge….more like $300-800 (I paid $300 I believe - I am NOT a carrier by blood)

Erin’s (my daughter/Kyle's sister) test will cost more because the price has gone up. Hers will not be $5000, even in this climate—probably under $1000. The test is the same, or they might use a similar technique. The price is going up because of market place competition…Athena will charge what they want and are a big corporation eliminating their competition. Academic centers have raised their prices because they are doing lower volumes and/or having to pay to use the patented gene sequence that Athena owns. It should be illegal for companies to own naturally occurring gene sequences."

So, in a nutshell it almost sounds like your hands are tied unless you can get Utah or another location to do it, get insurance to cover it, or perhaps MDA would assist in coverage??

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Permalink Reply by Keith Van Houten on November 16, 2009 at 10:01am

Veronica - BCBS just denied us for carrier testing. What state are you in?

Veronica E. said:

We have BCBS insurance, and my carrier testing, as well as Max's testing, was covered at 100%. I was told at one point that insurance companies probably want people to be tested (and, in turn, cover the cost of testing) since covering someone with Duchenne is so expensive, and they hope a positive test result would keep the individual from having a baby. (Sounds cold, I know, but I think that's the reality.) I actually didn't have to fight at all or even write one letter. I wish I had some advice ...

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Permalink Reply by Veronica E. on November 16, 2009 at 10:07am

I'm in Texas. We did my carrier testing at Baylor College of Medicine almost two years ago, and Max's testing was done at Baylor more a little more than a year ago. Unfortunately, my understanding is that Baylor is no longer conducting the testing. I'm betting it has to do with issues with Athena that Donna posted about. I'll have to find out where my sister sent my nephew's blood for testing less than a year ago and how much she had to pay.

Keith Van Houten said:

Veronica - BCBS just denied us for carrier testing. What state are you in?

Veronica E. said:

We have BCBS insurance, and my carrier testing, as well as Max's testing, was covered at 100%. I was told at one point that insurance companies probably want people to be tested (and, in turn, cover the cost of testing) since covering someone with Duchenne is so expensive, and they hope a positive test result would keep the individual from having a baby. (Sounds cold, I know, but I think that's the reality.) I actually didn't have to fight at all or even write one letter. I wish I had some advice ...

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Permalink Reply by Keith Van Houten on November 16, 2009 at 11:08am

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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