This is Infertility is a bi-weekly podcast where we fuse narrative storytelling with experience and science to give you a new perspective on what it’s really like to go through a family building journey. Each episode dives into the emotional, physical, and financial burdens carried by those who experience infertility on their path to parenthood. Be it IVF, IUI, egg freezing, surrogacy, adoption, etc., the path is never the same and it can be long, painful, and lonely. It’s our mission to give those struggling a platform to be heard, a community connection, and an opportunity to raise awareness of the 1 in 8 who, for many reasons, struggle with infertility.

Episode 91: Tennessee Fertility Advocates

“You don’t need a child to live.”

That is a direct quote from an insurance representative when asked why fertility treatments weren’t included in the caller’s healthcare coverage. Infertility isn’t a choice; it’s a disease. Yet, when couples and individuals seek help, they’re told by their insurers to deal with it on their own. As it stands, there is no national mandate for fertility coverage, which leads us to today’s guests, Kara Edwards and Mollie Walker. They’re working to bring a mandate to Tennessee and formed the Tennessee Fertility Advocates.

Both Kara and Mollie experienced their fair share of family building hurdles. Kara had a difficult start with endometriosis on her side and male factor infertility on her husband’s side. Four IUIs, multiple rounds of IVF, and over $110,000 later, she had twins. For Mollie, she took the medication Clomid, an estrogen modulator, to assist in conceiving her first child. Then, after two miscarriages, doctors diagnosed her with a blood clotting disorder called Antiphospholipid Syndrome (APS). Proper treatment led Mollie to her second child.

Although we can celebrate their fertility success, these stories highlight the backwards logic of our healthcare system. Without coverage, couples and individuals end up making decisions based on their finances and not based on what will actually help them reach their goal of parenthood.

Throughout this episode, we hear from Kara and Mollie about Tennessee Fertility Advocates, which seeks to change legislation in their state on coverage for fertility treatments. If successful, it will require eligible employers to provide fertility benefits for their employees. Join us to learn how you can do the same for your state.

Guests: Kara Edwards and Mollie Walker, Tennessee Fertility Advocates

Host: Dan Bulger

Want to help? Connect with the Tennessee Fertility Advocates on their website, Instagram, Twitter, or Facebook. And, help others fund their dreams through Kara’s Starfish Infertility Foundation. More information on her website, Facebook, and Instagram.

For more information, visit Progyny’s Podcast page and Progyny’s Education page for more resources.

Be sure to follow us on Instagram, @ThisisInfertilityPodcast and use the #ThisisInfertility.

Have a question, comment, or want to share your story? Email us at thisisinfertility@progyny.com.

Here are some highlights from this episode:

Insurance But No Coverage:
3:52-4:55

Kara Edwards: I’ll never forget the conversation where [the insurance rep] was explaining to me that none of it was covered — the testing, the bloodwork, the ultrasounds — none of it was being covered. I said, ‘I just don’t understand why. This is a disease. This isn’t something I asked for, this is a disease that I have, that a lot of people have. And so, I don’t understand why there’s no coverage.’ And she said, ‘Well, simply put, you don’t need a child to live.’ I don’t need a child to live. ‘I can choose to smoke my entire life, knowing that it will affect my life, and when I get lung cancer, you will cover that.’ And she said ‘yes, that’s exactly correct.’ And that was mind blowing to me. To this day, I still can’t wrap my head around that. So, we were stuck with 100% of the bill.

Emotional Toll of a Miscarriage:
9:10-10:25

Mollie Walker: And then a few years later, we decided to try to have a second [child]. I figured it would be pretty difficult because obviously, given our first time around, it took a little while. We were surprised that we actually got pregnant right away and just overjoyed. So excited, we ended up telling our close family on Christmas a few years back, and then we go to the OBGYN and realize that we had a very early on miscarriage. When I had that first miscarriage I just remember laying in the bed, crying all day. I did not want to get out of the fetal position. I just wanted to lay there and grieve and cry, and I did. We reached out to our close friends and family and had them pray for us. They were so kind and brought food and checked in on us. But I just felt very alone. And mentally, I feel I really did go through depression from it. I mean, there is such a mental and emotional trauma that can happen when you’re going through infertility. And a lot of people just really don’t recognize how traumatic it is.

Tennessee Fertility Advocates:
14:21-15:11

Mollie Walker: We had a federal advocacy day where we were talking about different legislation with Tennessee representatives and our senators, and it was so eye opening. After that, I started hearing some more about Colorado’s just recently passed legislation and I was able to get connected with their house representative. After hearing her story, I just said just need to put our heads together. We can do this on a state level in Tennessee, or we at least just need to really form an advocacy group and help others be a voice to those that are struggling.’ So, then we started Tennessee Fertility Advocates, a grassroots coalition group, and we are growing at a very rapid pace. We’re really excited for what’s to come.

Understanding Insurance:
18:25-19:41

Kara Edwards: There are a couple of things people don’t understand about coverage. Had we had the coverage, number one, we could have gotten the right treatment a lot sooner. We could have moved to IVF right away, which probably would have helped because, the more time that goes by, the older you get, the older your eggs get, and the more problems you have. So, the first thing is, you get your treatment when you should get your treatment versus down the road when you’re adding more issues to it. The second thing is, I made all of our decisions based on finances. So, if I had two embryos ready to go, I put them both back, if I had three, I put all three of them back. That’s not a healthy decision to make. Going through a single transfer of a single embryo. That’s the smartest thing you can do. But how do you stomach that when every time you do that it’s going to cost another $10,000 or $6,000 if it’s a frozen transfer. That’s hard to stomach and you’re in such a place of desperation. You just make those decisions.

Host

Dan Bulger, Producer at Progyny

Dan has been in the healthcare industry for the last six years as a multimedia content producer. Better known as ‘Video Dan’ he as interviewed numerous doctors, patients and other experts in the world of fertility. He’s also the producer for this podcast, This is Infertility. On a personal note Dan’s parents started fostering kids when he was four years old, and he considers himself a proud older brother to over 100 foster children. 

Guests

Mollie Walker, co-founder of Tennessee Fertility Advocate

Mollie Walker is the co-founder of Tennessee Fertility Advocates. She is a proud alumni of the University of Memphis, member of Harvest Church, and currently serves as the Vice President, Collierville City Executive at Landmark Community Bank. She is also actively involved in the Collierville Chamber, Collierville Rotary, and a member of the Generosity Network. She is the wife to Taylor and a proud mother of two beautiful children but the road to having them wasn’t easy. With no insurance coverage, years of trying to conceive, and two miscarriages it felt overwhelming and hopeless at times. Now she advocates passionately for others that the disease of infertility would be covered by insurance in the state of TN so the financial barrier is removed and allows more couples the opportunity to conceive their own children. 

Kara Edwards, Founder, Starfish Infertility Foundation

It took Kara, and her husband Brandon, nearly four years with six hundred and three injections, before welcoming their boy/girl twins in 2013. Blessed with the answer to their prayers, it did not come without a cost.  They spent well over $100,000 creating their family,  an amount insurmountable to most.

In 2015, Kara created Starfish Infertility Foundation. SIF is a 501c3 committed to providing financial support for those struggling with infertility in the United States. SIF awards grants to those couples without provisions through their insurance, nor the financial resources to pay for treatments. SIF also partners with clinics to bring additional resources and treatment funding to those in need.

Kara has become true advocate for the rights of the infertile. Her willingness to be an “open book” regarding her struggles has given so many woman a safe place to be truly open and honest about their own journey.

While each injection was a terrible reminder to Kara of what her body could not do for itself, she is grateful for each and every single one. Not just because it gave her what she always wanted in motherhood, but something else she didn’t even know she was looking for—a purpose.

Music From This Episode:

Artist: Kai Engel
Track: Seeker
URL: https://freemusicarchive.org/

Track: Global Warming
URL: https://freemusicarchive.org/

Artist: Rest You Sleeping Giant
Track: Jazzmasters and Delay Pedals
URL: https://freemusicarchive.org/

Artist: Philipp Weigl
Track: Western Shores
URL: https://freemusicarchive.org/

Track: Not the Streets you used to walk along
URL: https://freemusicarchive.org/

Artist: Meydan
Track: Underwater
URL: https://freemusicarchive.org/