Gearing Up for Advocacy Day – Andrena’s Story

Thanks so much to all of you who applied for our The ART of Infertility Advocacy Day grant! We wish we had the funds to help everyone who applied. The staff at RESOLVE: The National Infertility Association, was kind to choose the recipient and chose Andrena King who will be representing the state of South Carolina! In today’s post, we hear a bit about Andrena’s infertility journey and what she’s been doing to advocate for change. Thanks, Andrena, for sharing your story!
-Elizabeth

My husband Chris and I were married October 2013 and we decided to try to conceive two years ago. After actively trying for a year we started the process of getting basic tests done to make sure everything was working fine. One of the initial tests showed that I had a blocked fallopian tube so I was immediately referred to a fertility doctor by my gynecologist. Everything was happening so fast that initially I felt numb. I held my tears in until I went back to work and had a major breakdown in my supervisor’s office. I was heartbroken and afraid. 

We had a terrible experience at our first consultation. It was like we were on an assembly line. We were rushed in and tossed to people we were meeting for the first time who seemed more concerned about signing us up for the next group of couples getting IVF. My husband and I were devastated and no one cared. So, we took matters into our own hands and started doing research. We started our search for other fertility specialists in the area and reached out to friends who had overcome infertility for guidance. I found the RESOLVE: The National Infertility Association website and was blown away by resources available there.

While reviewing our health plans, we realized that our benefits included the opportunity to receive a virtual second opinion online. We had our tests and charts reviewed by a fertility specialist. While he couldn’t confirm that my fallopian tube was actually blocked, he did rule out male factor infertility. We found another fertility doctor that was a great fit for us. Our new doctor was recommended by mutual friends. As we talked during our first appointment, we knew we were in the right hands by his compassion and his ability to explain options. He advised that the next step was to have a laparoscopy done to see what was actually going on.

During the surgery, it was discovered that one of my fallopian tubes was severely damaged and had to be removed. The damage was due to a previous surgery I had to have a cyst removed while I was in college. My left fallopian tube was blocked by a cyst so that was also removed.  We felt optimistic after gaining answers from the laparoscopy and decided to move forward by taking fertility medication and trying on our own for two months. The third month, we had our first IUI which wasn’t successful. Month four brought another unsuccessful IUI.

Based on what the doctors said, it was the perfect opportunity for us to conceive because everything was in place. We were very disappointed and decided that mentally, emotionally and physically we needed a break. We are currently taking a break from treatments and have become very involved in raising infertility awareness in our community.

While busy with treatments and doctor appointments, I recognize the limited access to resources and support in my city related to infertility. After seeing the guidelines needed to start a support group, my cousin and I decided to start a RESOLVE Peer Led Support Group in Columbia, SC. Our first meeting was held in August of 2016. The group is one of two in the entire state of South Carolina. When our journey started, Chris and I quickly realized that our insurance plans would not pay for any of our doctor bills or treatments. This set back and financial burden prompted us to advocate to change this injustice, not only for ourselves but for others in our state. After months of meeting with legislators, the S.10 Legislation was pre-filed in December of 2016. The bill requests that insurance companies cover the diagnosis and treatment of infertility procedures. The legislation has some exclusions but this is a big step in the right direction. The legislation is currently in subcommittee waiting to be discussed by the Senate and House. We have great support from our family, friends, co-workers and non-profit organization WREN (Women’s Rights Empowerment Network) advocating with us to get this legislation passed.

I applied for the Advocacy Day grant to bring awareness to the lack of insurance coverage, legislation and support in my state for families trying to conceive. This has to change. I’m looking forward to learning how to properly interact with legislators to advocate for others on their journey to parenthood as well as collaborating with others who as passionate as I am about making a difference in our states. I hope to gain new friendships, guidance and be empowered to continue to advocate for others.

Chris and I remain positive that we will one day become parents as we rely heavily on our faith in God, prayers and support from loved ones.

Myth – One round of IVF is all it takes to “beat” infertility. 

I was very reluctant to try IVF. Three and a half years into trying to conceive I had endured 5 rounds of Clomid and timed intercourse, 4 IUI hybrid cycles, a diagnostic laparoscopy, and six months of weekly therapy appointments to sort out how I felt about the prospect of using IVF to try to build my family. I had spent months doing research about the procedure, along with even more extensive research about adoption. After much consideration, my husband and I figured that IVF would be the cheapest, fastest, easiest path to parenthood, even though it isn’t any of those things. Assuming it worked.

One in eight couples in America have received a diagnosis of the disease of infertility. Like most Americans needing IVF, our health insurance wouldn’t cover the treatment. We’d have to pay out of pocket. Not only that, the emotional investment can be extremely expensive. We decided that, for us, the best plan would be to try one round of IVF, transfer any resulting embryos, and move on to other options.

I remember when I told my mother-in-law we had decided to give it a try. I was in the dollar aisle of a grocery store talking to her on my cell phone. “That’s good,” she replied. “We know IVF works.” However, while I appreciated her confidence and hoped that it WOULD work for us, I’d done the research and had insight that she didn’t have. Although IVF would give us the best odds we’d ever had of achieving a pregnancy, they were still against us. IVF working was definitely not a sure thing.

#IVFcrib

Crib with Medication Boxes by Elizabeth Walker. Mixed media with custom crib by Morgan Shores Woodworking.

As described in this December article from The New York Times, a study out of the University of Bristol and the University of Glasgow in the United Kingdom found that “nearly two-thirds of women undergoing I.V.F. will have a child by the sixth attempt, suggesting that persistence can pay off.”  The out of pocket costs for those cycles? As explained in this article about the same study, published by the Los Angeles Times, “a rough calculation (assuming two attempts at embryo transfer per cycle) would cost up to $132,000”.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

THIS is why it’s so important that we advocate for legislation that will help those with infertility build their families. Maria and I will be at Advocacy Day in Washington, D.C. on May 11th, fighting for this cause and we invite you to join us! It’s an amazing, empowering experience, and a place where incredible friendships are made. In fact, Maria and I met at Advocacy Day in 2014.

If you want to learn more, check out this link from RESOLVE: The National Infertility Association. Or feel free to contact us to chat about it at info@artofinfertility.org. If you can’t make the trip, check out this link to learn more about the federal legislation and for easy ways to contact your Senators and Members of Congress to show your support. Another easy way to make a difference is sharing messages about Advocacy Day on social media. You could share this video, for example. Together, we can raise awareness, busting the myth that one IVF treatment is all it takes, and working to improve the treatment coverage that will help those with infertility build their families.

Elizabeth

#IFadvocacy