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Genome Sequencing Insurance Coverage

preggersINschool25preggersINschool25 member
in Special Needs

I just found out that we were denied getting Genome Sequencing covered from Blue Cross Blue Shield.  He had the microarray done and it showed a duplication on 5p.  I wanted the sequencing done to make sure that it was significant and that there wasn't anything else that was missed.

 I'm in the process of applying for Medicaid as secondary insurance and also Children's with Special Healthcare needs (we are in Indiana).  Does anyone know if either of these will cover the cost for a genome sequencing test?

He has had an MRI, tons of blood work, and spinal tap.

He still is not even close to crawling (born on 2/15/12).  He can't get up on all fours, he can't even extend his arms straight when on his belly.  I feel like he is severely delayed and I would like answers.  Other than the duplication we don't have any good leads at this point.

What should I do?



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Re: Genome Sequencing Insurance Coverage

  • laurdinglaurding member
    I don't know if this is helpful, but we are in a similar boat.  We haven't heard from ins, but we are headed for genome sequencing.  Right now, we are waiting to see if we will be accepted into a research group that would complete the sequencing
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  • realisticdreamsrealisticdreams member
    the genome sequencing is SO NEW on an outpatient insurance coverage level.  When P had genetic testing done 3 years ago, I don't even think we did the SNP/Microarry, and now that is the standard test.  In just 3 years, it has changed so much. &n
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • mommyof4boysmommyof4boys member
    We were told to not bother with genome testing until the pricing came down; the geneticist said the insurance wouldn't pay for it.   Our youngest has a 16p11.2 duplication.  We were told that any change is clinically significant if the person is
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  • Assembly_ReqdAssembly_Reqd member
    I just found this link but I am not sure it will help....

    https://ghr.nlm.nih.gov/chromosome/5/show/Conditions

    On phone and I haven't figured out links...sorry!
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  • FemNik214FemNik214 member
    I don't know if this will help but my 5 week old just had hers done and it was covered by medicaid(husbands work insurance would have bankrupted us) we're in Texas though so good luck!
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  • Assembly_ReqdAssembly_Reqd member
    Have you been to an Endocrinologist?
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  • preggersINschool25preggersINschool25 member
    imageAssembly_Reqd:
    Have you been to an Endocrinologist?


    Yes, we have but only because Grant has an unde


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  • Assembly_ReqdAssembly_Reqd member
    I was just wondering if all systems were looked at. Hypothyroidism can cause developmental delays, but maybe not to the extent of your DS.

    Another thought is something metabolic. Maybe he is not processing certain nutrients that his nervous s
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  • mommy06mommy06 member
    We were also told to not even try to have it done for a few more years when the price comes down some:/
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