SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Is anyone having any luck getting insurance to pay for genetic testing? If so, how did you do it and what percentage did they pay? I'm finding inconsistencies within the same company between how much insurance is willing to pay and the hoops you need to jump through versus what other family members with the same insurance are required to do.

I did get my ins to pay for my son's genetic test but yes I did have to jump thru many hoops. Luckily I had documented every conversation I had had. Every date, time, with whom I was speaking with and how much they were going to pay. I also demanded in writing that they were considering the company in-network because there was not an in-network lab to do the test. I had done all this at the pre-approval stage. My son was the first time Blue Cross of RI ever handled this type of claim. All of this info came in handy when they paid out of network and only paid $310. After 4 months of fighting and over 30 hours on the phone, BC/BS ended up paying all but $2.00! Of course they claimed the lab was at fault or BC of CT handled it wrong, any excuse they could think of...Persistance pays off, so don't give up! As for getting my daughters tested, I am still fighting that battle.

I just found out on Wednesday that my 15 YO daughter has long QT. I spoke with the insurance company today and they told me that once my out of pocket expense was paid ($1,100) they would pay 100% if the testing exceeded $1,100. I was told that the test would cost $5,400 so I'm relieved that they are paying that much. Since PGX Health is the only lab in the U.S. that does genetic testing, I don't have to pay for going out of network since I live in Illinois and not Connecticut where the lab is located. By the way. . . my insurance company is Cigna PPO. I hope that this helped you some what. Good luck.

That is good news! Just a word to the wise however, please be sure to get this in writing from your insurance company. That came in handy for me when my insurance company considered it out of network anyway and paid only just over $300. Luckily I had the name, time, & date of everyone I had ever spoken with, and my letter. The Ins company did not want to give me their payment decision in writing but I just kept demanding it until I got it. I wish you luck with your daughter. My son is doing well taking Mexeletine for Long QT 3, which we wouldn't have known which one he had without this valuable test.

Thank you so much for the advice. I will call them back and get it in writing. I wish the best of luck for your son also. I agree that we are very fortunate to have found thils diagnosis. Awareness is key to this syndrome. Why would anyone do an EKG on a healthy child? I have sent out all of the facts from this website to all of my friends and hopefully they will also forward them on. I never even heard of this until now!

Tricare Prime (for active duty military) covered 100% of the cost for my children, but it took several months and appeals to get it approved.