Everyone has their own IVF stories and struggles to share. I asked Mike to write the following (he is amazing and handles the insurance) after we received a few emails from couples who either are or may soon be undergoing PGD/PGS asking about our experience with PGD and insurance as well as the additional emotional and financial stress that it adds to an IVF cycle.
For now, I’ll try to elaborate on our experience regarding the added cost of PGD and how we figured out what it would be. Please note, while we will be specific with regards to actual numbers, the name of our insurer and the PGD lab shall remain anonymous.
Firstly, IVF-ers should check this site out to see what your state’s insurance coverage is. We recognize how fortunate we are that we live in a state where the cost of IVF including medications is covered, and we sympathize with all those having to deal with the enormous financial burden with minimal or no reimbursement. You should note this is a realization we came to in the middle of our first cycle while seeing others go through the process and pay out of pocket. That being said, we did not realize how truly complex our case would become because PGD was added to the equation. Hopefully explaining our specific case will help others who are in the same boat.
Where to start? That question was really overwhelming and our RE’s office and insurance company were not really helpful in determining what we should do first. I mean NO HELP whatsoever.
The first obstacle was to determine whether or not PGD was covered at all. Though this may seem like a simple question, that could not be further from the truth. After speaking with various customer service representatives from our insurance provider over the course of a few weeks, explaining to each what exactly PGD is… let’s stop there for a second. PGD is so rare and complex that even some of the doctors and nurses at our RE’s office do not feel qualified to discuss it with us. So not only are we infertile but now no one will talk to us about our specific very rare problem. Anyway…after hours, literally hours on the phone it was finally determined that PGD is included in our plan. Terrific news right?!?! Nope… Prepare for a crash course on the true meaning of in-network versus out-of-network.
In-network is easy. If your RE is in-network, then your insurance company has already contracted a price for any given service from that provider, and they will in turn pay some percentage of that price. In our case, our insurer pays 100% for in-network services.
Out of network
Out of network becomes somewhat more confusing. Reimbursement for out of network service is usually less. In our case, the insurance company “reimburses at a rate of 80% minus our deductible ($500/year).” Okay, but 80% of what? 80% of the total cost of PGD? 80% of what they feel like paying? 80% of a chocolate chip cookie? Turns out this is a very important question. Again, after hours on the phone, I was told what they will actually pay is 80% of the “usual and customary rate” that they pay for that given procedure. So for example, if you get an x-ray from an out of network provider that costs you $100, but your insurer’s usual and customary rate for x-rays is only $50, then you get reimbursed $40, not $80. And this is of course assuming you’ve already fulfilled your annual deductible.
Here is where it gets really confusing. Turns out that:
- there is only one IVF clinic in our area that is in network.
- they only use one specific lab for PGD.
- that lab is out of network AND furthermore does not accept insurance at all.
Each one gets better than the next, and by better I mean worse and more annoying. After relaying this information back to our insurance company we were introduced to the concept of “in-for-out.”
This phrase is confusing in itself and figuring out what this actually meant took a few more hours on the phone. Basically, “if a procedure is deemed medically necessary, and there are no in-network providers available then they reimburse as if the provider was in-network.” Based on us being infertile and our both being carriers of CF, IVF with PGD was deemed medically necessary. So we applied for in-for-out and our case was accepted. But remember, this means that they will reimburse 100% of their “usual and customary rate.” Enter CPT codes.
Current Procedural Terminology (CPT) codes are numerical codes assigned to all medical, surgical, and diagnostic services and are used amongst other things to help regulate costs. For our PGD, there are three CPT codes involved:
||Amount We Paid (before retrieval)
||Amount Reimbursed (eventually)
|Probe Creation (81403)
|Chromosome Testing (81228)
|CF Mutation (81479)
The question marks are particularly curious. When they cut the first check (which as a comical aside was mistakenly mailed to our PGD lab instead of us) the reimbursement for that code was a whopping 4 cents. Pay $3000 get 4 cents back…makes sense. After pointing this out, they assured me this was a mistake, and that they would correct it after reviewing our case again. So after numerous additional phone calls, they still don’t have a number for that code, but they’re “working on it.”
We’re hoping for a least a nickel.
So ultimately, given the rarity and complexity of PGD, although it is covered by our insurer at an in-network rate, we had to front the full cost (with help from our family) of $9250, and have so far been reimbursed 26% of that cost. Oh…and that’s just for the first cycle…