IVF coverage when the issue is genetics and not fertility?

[Anonymous]

Spouse and I have each been diagnosed with a genetic mutation that can cause adult-onset issues. (I'm not sick but am currently being monitored and treated in regard to this; Spouse is OK.) We've been to a couple of REs in the area, none of whom have dealt with our specific situation. Thus, no one seems to know how to handle the insurance part of it. Both of us completed preliminary testing and all of our results indicate no fertility issues.

I was wondering if anyone else out there was a federal employee, and if anyone managed to get any coverage at all for IVF or PGD in a genetic-problem type of situation. If so, which insurance did you use? I'm not feeling particularly hopeful about what I'm seeing in the plan brochures online, but all of them categorize the treatments as infertility resolutions.

Thank you for your help.

[Anonymous]

My RE said that for federal plans and plans on MD health exchange, they only cover when you areninfertile - meaning inability to get pregnant. He was very clear that neither plan will cover for me. I can get pregnant easily but have recurrent miscarriages.

It sucks. Sorry OP. We are not doing IVF as a result.

[Anonymous]

^ OP here. I'm really sorry, PP. Insurance companies are so ridiculous.

[Anonymous]

How long have you been trying? All my tests showed normal, but I got a diagnosis of secondary infertility after trying for a year.

[Anonymous]

There MD exchange says you have to have been trying for two years with no pregnancies.

[Anonymous]

Hi OP, I successfully appealed for IVF in order to avoid a genetic condition in baby. Happy to share more details privately if you'd like. I'm not a fed, have Kaiser insurance.

[Anonymous]

I have the same issue. Kaiser covers at least some (if not all) of the treatment if you have a genetic issue.

[Anonymous]

Anonymous wrote:Hi OP, I successfully appealed for IVF in order to avoid a genetic condition in baby. Happy to share more details privately if you'd like. I'm not a fed, have Kaiser insurance.

Could you tell me how you did this? I can pm you, if you like.

[Anonymous]

I'm the PP who successfully appealed through Kaiser. Essentially I had to make the argument that IVF-PGD should be covered under maternal care. It was medically necessary to prevent disease. I also had doctors' notes confirming my carrier status, explaining the inherited disease, treatments, and associated costs.

Here's some info through Tufts as an example: https://tuftshealthplan.com/documents/providers/guidelines/medical-necessity-guidelines/pgd

[Anonymous]

Thanks! I've worked with genetic counselors at Kaiser, so they already know I have a genetic diagnosis (for x-linked juvenile retinoschisis) and that I am a carrier. It might be a little tricky because there are no treatments and therefore fewer associated costs for Kaiser to cover an infant with this particular disorder.

I've received some mixed information, but one doctor there told me they'd cover the PGD but not the IVF procedure. Did they cover everything for you? Or did they just cover the PGD of embryos?

[Anonymous]

Sorry to be the messenger but Federal Kaiser and Aetna have both dropped IVF coverage for 2017. There are threads in the infertility forum.

[Anonymous]

Kaiser appeal PP here-- insurance covered IVF and embryo biopsy but not PGD. This still felt like a victory to us because we had no fertility issues.

I also have Kaiser through MD employer, not Fed. Very sorry to hear situation with fed insurance!

[Anonymous]

I'm the poster who has worked with genetic counselors at Kaiser. I have it through an employer in MD, not fed as well.

It's so strange because the only thing they seemed sure they'd cover is the PGD but everything else is up in the air. My doctor is going to put in a referral, and the way I understand it after that they'll either accept or deny the claim. I'm not really sure what happens beyond that.

[Anonymous]

I went through this 2 years ago so maybe things have changed? Fingers crossed for you--let us know what happens.

[Anonymous]

PP who has Kaiser, again. Thanks so much!

Could I also ask how long it took to get pregnant? All of the stats are for women who have fertility problems, but I can't get a read on how quickly it goes if you don't.