This Disease Affects 1 in 8 Women. So Why Aren’t We Talking About It?
I started my period this morning.
I remember when that used to be a good thing. Not so these days.
My husband and I have been trying to have a baby — or “TTC” — for a couple of years now. TTC (trying to conceive) is what they call it on the infinite blogs and fertility forums you’ll discover if you end up going down the infertility rabbit hole they call Google.
Six months ago we started seeing a fertility doctor. We’ve gotten a few answers since. I have polycystic ovaries. I don’t appear to ovulate regularly — my ovaries are filled with clusters of small cysts containing immature eggs. This picture describes it pretty well. My husband has low sperm count. He’s fourteen years older than I am, so the low sperm count may just be a natural part of getting older, or it may not…we don’t really know.
What we do know is that we’re struggling with infertility.
A host of medical societies and organizations, including the World Health Organization, have all classified infertility as a disease. According to the National Infertility Association, infertility is defined as the inability to conceive or carry a pregnancy to term after twelve months of trying to conceive. If you are over the age of thirty-five, that timeline is reduced to six months. I’m under thirty-five, and we’re well over the twelve month mark…so hey, we’re infertile. Awesome.
When you’re faced with infertility, a crazy thing happens. You discover how many other people are in a similar situation. The statistics are actually a little staggering. One in eight couples in the US are faced with infertility. I know at least three other women in my office who are currently or have recently undergone treatment for infertility (and that’s only out of the people I’m close enough to talk to about this). I have friends who have been affected. My friends have friends who have been affected. It has started coming up in conversation with strangers at cocktail parties. Kim Kardashian, Chrissy Teigen, and Jaime King have all publicly talked about their struggles conceiving.
So, since the medical community agrees that infertility is a disease, and huge numbers of both women and men are affected, you’d expect infertility treatment to be covered by insurance, right? Wrong. Despite the large number of people affected, insurance coverage for infertility varies widely, with no federal legislation. In some states, medical coverage for infertility is mandated (though coverage requirements vary). In most states, it isn’t.
For my husband and me, this “cycle” (a cycle is the number of days from the start of your period until the beginning of your next period) marked our fourth IUI (intrauterine insemination). I’ll define what an IUI is through our experience: my husband deposits his sperm into a cup at the doctor’s office once a month (we all know what this entails…), and then a nurse injects it into my uterus through a catheter she pushes through my cervix. It sounds about as fun/sexy/romantic as it is. But we’re lucky. Our insurance covers this. I’ve had friends who have had success with IUI. Two of my coworkers each got pregnant on their second IUI cycle. I remember walking up the stairs to my apartment the day that I had my first IUI — I had this new pep in my step. I remember thinking, “I could be almost pregnant right now! I bet this was the little bit of help we needed!”
Unfortunately for us, that wasn’t the case. And four doesn’t appear to be our lucky number.
Emotionally, infertility rocks your world. Suddenly, your lifelong expectations are crushed and your sex life is reduced to a routine of needle pricks, medication, ovulation calendars, and multiple early morning visits to the doctor each week. Stress, depression, and anxiety set in. The experience tests your relationship, your optimism, and your sense of self-worth. I’m the queen of over-sharing but I find myself unable to talk to my family about what I’m going through. Throw in the cost of treatment, and it’s no wonder that depression is a seriously common side effect of infertility.
After our third failed IUI, my doctor sat me down and told me that IVF (in vitro fertilization) would be a better route for us. I left feeling shell-shocked. We live in New York, and in case you were wondering, New York is not one of the states with a fertility coverage mandate that includes IVF. With our insurance, one cycle of IVF will run us about $13,000 (my insurance covers the medication, which on its own could cost up to $5,000). The majority of women have success rates of 20%-35% per IVF cycle. If the first round isn’t successful, assuming enough eggs are harvested for more than one egg transfer, each subsequent cycle will cost us around $4,000. A friend recently got pregnant on her fourth transfer. She and her husband probably spent around $25,000 all in.
Clearly the options currently available are only really options for the affluent.
My husband and I both have good jobs — we are very lucky in many respects. But our finances aren’t picture perfect. I recently completed my master’s degree. Coupled with my undergraduate debt, my student loan payments are astronomical. My husband went through a period of unemployment a couple of years ago, and his savings took a big hit. We live comfortably, but we don’t have a spare $25,000 lying around. If we did, we’d ideally use it to send our future child to college, not to bring it into existence.
I haven’t conducted extensive research on why we’re seeing increases in infertility, so I’ll spare you the details of my theories, but suffice it to say I’m confident that cultural dynamics play a part — women are waiting longer to start families. We’re going to college, pursuing careers, taking leadership roles, not rushing into marriage and babies. None of this sounds new or particularly groundbreaking, because it isn’t.
It’s not news that women are waiting longer to have children, and we’re not going back to an era where women marry in their teens and bear children during peak fertility. As women “lean in” and fight for equal pay and a seat at the table, should the price be the emotional and financial burden of infertility?
But it’s important to remember, infertility doesn’t only happen to people like me — college education, good job, upper middle-class. It happens to people of all socioeconomic statuses and backgrounds. In 2014, the median household income was estimated to be $53,657, according to the Census Bureau. The cost to undergo IVF treatment could easily run more than half of the households in the US half of their yearly income. Are we telling these families they aren’t worthy of being parents because they’re suffering from a disease and can’t afford to treat it?
As a country, we can do better. Society has fundamentally changed — access, options, and support for family planning and family building must follow suit.
A known disease directly affects at least ten percent of the US population, but instead of reducing the impact of that burden with treatment and affordable healthcare options, we layer on financial trauma and a lack of emotional support and resources. Good thing stress doesn’t impact your ability to get pregnant…oh wait, it looks like it does.
Again, my husband and I are lucky. We have options; many people don’t. I’m hopeful we can have at least one child biologically. I broke down in tears talking about this today, so if we can’t, I’ll need to take some time to mourn that experience. Then I’ll throw myself enthusiastically into the adoption process (another costly endeavor). For now, we have our fingers crossed that my husband’s company will expand its insurance to cover IVF.
