Written by Elena Ridley, Guest Blogger
Ah infertility, it was a word I was not super familiar with until my husband and I started trying for babies several years ago. Never ever in my life had I considered I would be affected by infertility. No one in my family struggled with it, I had normal cycles and had never had any issues in the past, but once we began trying and month after month passed with negative test after negative test, I began to familiarize myself with the word. There were many tears shed about it before it was even properly diagnosed. There was a feeling of isolation because so many others were conceiving right before my very eyes, yet here we were two years into it and NOTHING.
Although I had spoken to my midwife after 12 months of TTC with no pregnancies, it would be another full year before we would be referred to a reproductive endocrinologist. In those first two years we tried a lot of silly things but we were desperate. Then we began doing things like having blood tests, semen analysis, and hysterosalpingograms. When terms like this started to become part of our reality, I knew there was something wrong. When I couldn’t hardly pronounce the word of the test I was having done, it was an indication that maybe there was a reason for our inability to get pregnant, it was then that I became very intimate with infertility.
Infertility is one of those things that most people don’t ever believe will happen to them, I was one of those people. There are some women and men who know ahead of time that they could struggle to have children, however the vast majority really have no idea that it will become their reality. Like many other diseases, infertility does not discriminate; it doesn’t matter what your race, gender, sexual orientation, religion, or social class is—infertility may choose you. It can affect anyone from the poorest of the poor to the richest of the rich. The only difference is access to infertility treatment. The average cost of a cycle of IVF is around $20,000 and the average cost of an IUI is around $5,000 and the real kicker is there is absolutely NO GUARANTEE that it will work.
One of the most frustrating parts of all of it is that most people are not provided with insurance coverage for infertility treatment and although some states are “mandated” to provide coverage, if your employer is self-insured as many are, they do not have to follow the mandate law in their state. It makes access to infertility treatment extremely frustrating, expensive, and limited. Most people do not have an extra 20k laying around to spend on something of this nature. So many people will max out credit cards, take second mortgages on their homes, or forego treatment at all because of the cost being so high.
I was lucky that when I was pursuing infertility treatments my insurance plan covered infertility. There were no limits to what it covered and I was able to have 2 IUIs, 3 fresh cycles, and 3 frozen cycles covered by my insurance and paid very little for my treatment. My coverage included medications as well along with all the monitoring appointments and bloodwork. I was so fortunate for this because at the time we had just began building our home as well and without that coverage we never would’ve been able to afford multiple rounds of treatment. When we ventured down the path of donor eggs, the game changed as insurance would not cover the treatment of another person and we learned for the first time what it was like to spend thousands of dollars on our gamble with donor eggs. We were also very fortunate that we finally did get pregnant with donor eggs after so many failed rounds with my own eggs.
In 2017 our union contract was expiring. I work for a utility company in Illinois and under our previous contracts we had our own insurance plan that differed from that of management employees. Our union insurance plan covered infertility, our management plan did not. When our contract came up in July 2017 our company pushed very hard for all employees to be on the same plan, the management plan. I was so crushed because I never considered that I would lose the coverage, yet here it was, presented right in front of us and something the company was not budging on. Originally we voted down the contract but the company came back and said that another “no” vote would result in a strike and upon our second vote, the union voted in the new contract with the new management insurance being part of our agreement. Since that contract was put into place, we have attempted two frozen embryo transfers for baby number 2. Now that we do not have coverage, we have had to pay in upwards of $10,000 for these two cycles. The outcome of both of those cycles ended in pregnancy loss and no take home baby. That’s TEN THOUSAND dollars with NOTHING to show for it, and a large percentage of which would’ve been covered by insurance if our company would consider infertility treatment as part of their plan.
Now that this coverage has been taken away from us, it’s put a huge financial strain on being able to continue treatment. Before, what was actually very accessible for me has become a huge burden. I feel like we’ve actually taken a step back on something that we should be taking a step forward on. As the topic of infertility becomes less and less taboo, I see so much progress forward yet here we are progressing backwards. To say it’s frustrating is an understatement. Although I have no idea where the outcome will go, and there is a possibility it will go nowhere, I am going to be taking on the task of asking my employer to consider providing infertility treatment coverage to its employees.
With the help of Resolve – who already has steps in place to help people have the conversation with their employer about providing coverage – I plan to ask our benefits department about a rider to include infertility treatment. Although there is a big chance the answer will be no, I feel as though it is my duty to ask. I wonder how many of my fellow employees are struggling to get pregnant, are struggling to fund their treatment because we offer none, who wish there was coverage but don’t know the first thing about how to go about asking for it—I hope that maybe I can convince our company to help us progress forward with infertility treatment and help make it more accessible for people who desperately need it.
If you live in a state that mandates infertility coverage like I do but your employer is self-insured so they are “off the hook” from following these rules, I would highly suggest reaching out to your HR or benefits department and demanding change. It is heartbreaking and appalling that so little has been done in terms of coverage to help family building. I hope that one day we get to see all states mandate infertility coverage and self-insured companies begin considering how important and vital this coverage is to so many people as 1 in 8 couples in the United States struggle with infertility.
Infertility will never go away. It’s something that will continue to affect couples and the statistics may continue to grow as more and more people continue to share their struggle openly. We must continue to make infertility a topic that can be openly discussed, we need to make the public aware of the disease and help those who do not suffer with infertility better understand the complexity of the disease and the financial burden that comes along with it. There are so many wonderful ways to build our families besides the “traditional” ways, surrogacy, donor sperm, eggs, or embryos, adoption and more allow for couples to create their family dynamic in ways that were not always possible years ago, however we still lack the accessibility to these options being feasible because the costs are astronomical which is something we need to continue to advocate to change!