Pregnancy with PKD: how to navigate healthcare costs for IVF and PGT-M.
Aug 15, 2023
I’m Natasha Rogina, a teacher living in Colorado. I discovered I had PKD when I was 21 years old. My mom also has it. When my husband and I decided to start a family, we knew we would proceed with IVF to ensure a PKD-free pregnancy.
While I am incredibly thankful to work for a company that offers health insurance, navigating the insurance world while undergoing IVF has been nothing short of a nightmare.
One of the first things I did before starting our journey of creating a family was read through my benefits packet. My benefits package clearly stated that I had zero IVF coverage and the IVF clinic we used confirmed that. We opted for a self-paid package that cost approximately $22,000 for our first cycle, which included egg retrieval, embryo biopsies, the PGT-M probe, and our first transfer. Unfortunately our first transfer failed, so we paid another $4,500 for our second transfer. Thankfully that transfer resulted in the PKD-free pregnancy I am currently carrying! One would think insurance companies would cover IVF, especially when you are preventing a disease from being passed down, which would one day cost the insurance companies hundreds of thousands of dollars. Unfortunately insurance companies rarely think about preventative healthcare.
During this journey, at some point I came across a line in my benefits plan that stated I had pre-implantation genetic testing coverage. I was shocked because this line was written nowhere near the IVF section in my benefits plan. YOU CANNOT DO PGT-M TESTING WITHOUT IVF. Period. Well, I tried to get reimbursed for the $5,000 PGT-M probe through my insurance, but they denied me. Ultimately they claimed that my clinic and the lab who built the probe must have had an agreement to not bill through insurance. It’s really important to be your own advocate and in some cases, contact your insurance company directly before having a procedure. Otherwise you could get billed by default.
It is crucial that anyone going through IVF takes the time to thoroughly read their benefits package. PGT-M might not be listed anywhere near IVF and that could cost you thousands if you do indeed have PGT-M coverage. I unfortunately did not realize I had that coverage until it was way too late. I am grateful that my PGT-M probe will now be covered by pkDO but not everyone has that option. You must be your own advocate! You must speak up, fight the insurance companies, and talk to as many people as you can! Make sure you understand your coverage inside and out. It could save you thousands! :)
If you have PKD and are looking to start a family without passing it to your children, pkDO may be able to help with funding for your PGT-M probe. Learn how
ENDING PKD IN THE NEXT GENERATION
pkDO will fund pre-implantation genetic testing (PGT-M) for 100 families, to enable a new generation of children to be born without PKD.
