HEALTH
10/17/2018 10:10 am ET Updated Oct 17, 2018

Most Americans Who Can't Get Pregnant Have No Way To Access Treatment

Who gets access to fertility specialists in the U.S. says a lot about who we think "deserves" a family.
The majority of people in the U.S. with fertility issues have not seen a doctor about them, counter to the majority of medica
Getty Images/HuffPost
The majority of people in the U.S. with fertility issues have not seen a doctor about them, counter to the majority of medicalized narratives that discuss the infertility experience in America.

I cried just once about my second miscarriage ― before it even happened, on the way home from a grocery store. A nurse called me to say that my pregnancy hormone levels had failed to increase properly for the third time in a row.

She didn’t warn me that I would lose the six-week pregnancy, and she didn’t have to. I knew, from previous experience, what that meant. Afterward, I was largely silent about the loss. I focused on my work and deflected any attempts my family made to reach out.  

As soon as I knew I was miscarrying again, I settled on a plan, and having action steps calmed me. After trying to conceive naturally for a year, and then having three intrauterine inseminations (two of which resulted in our losses), my husband and I decided to “join the big leagues,” as we joked, and do in vitro fertilization, the most effective treatment that medical science can offer infertile people.

“I’m never going to have a miscarriage again,” I said as my husband nervously kept track of the new bills as they came in ― $2,100 for an embryologist fee or $3,950 to chromosomally screen the embryos. Two IVF cycles, one frozen embryo transfer, countless injections and $55,000 later, I’m now the mother to an 18-month-old daughter.

When I rocked her in my arms after she was first born, I couldn’t stop staring at her tiny face, her pearlescent skin, her faint unibrow. In those features, I could see my sister, my mother, my aunts and my grandmothers. I could see my husband, his family, his ancestors. I felt like I was holding a precious treasure whose worth was beyond all measure. I felt wealthy beyond my wildest dreams.

In this country, we think of infertility as a private tragedy to overcome with individual grit and a personal credit line. If you don’t have either of those things, you’re S.O.L.

My infertility story, which I turned last year into a podcast called IVFML, is part of a surge in storytelling ― both journalistic and fiction ― about infertility. While still an emerging genre, these narratives tend to explore a few well-worn contours. The couple, or sometimes a single parent, gets the baby they always dreamed of, like I did. Or they might not, at which point they figure out how to move forward and come up with a new way to make a family.

This narrative is so familiar by now, so common and mundane, that the average American might be lulled into a false sense of assuredness that people who can’t get pregnant are getting the help they need.

And while these stories help to destigmatize infertility by spreading awareness of the pain it can bring ― one of my goals in creating my podcast ― they also obscure a disturbing and little-discussed fact about infertility treatment in the U.S.

That fact is this: Most childless people in the U.S. who can’t conceive a baby or carry a pregnancy to term have not seen a doctor about it. And even if they have, they probably can’t afford the infertility treatments, rarely covered by even the best health insurance, that might ultimately resolve their medical issue.

In this country, we think of infertility as a private tragedy to overcome with individual grit and a personal credit line. If you don’t have either of those things, you’re S.O.L.

Listen to Episode 1 of IVFML Becoming Family below. 

In reporting on the second season of IVFML, we widened the scope of the show beyond ourselves to depict other families from diverse walks of life ― trans people, single people, those who decide not to have children in the end. But we did focus primarily on people who, like us, could plunk down a health insurance or credit card when they needed something.

But the best data we have on people with fertility issues tells us that these treatment-focused stories don’t depict the true face of infertility in the U.S.

In all, an estimated 12 percent of U.S. women, or 7.3 million people, have problems getting pregnant or carrying a pregnancy to term. And access to infertility treatment is declining while the rate of people who need these services is rising. From 2006-2010, the last time the federal government published this data, only 38 percent of childless women of reproductive age who had fertility issues had ever used any kind of infertility services, down from 56 percent in 1982.

While fertility issues strike people of all races, economic brackets and education levels, the research shows that women who have less access to health care and insurance are even more at risk for both infertility and the consequences of a lack of access to care.

For example, researchers estimate that compared to white women, black women have 43 percent higher adjusted odds of infertility, defined as the lack of a pregnancy after 12 or more months of unprotected sex with a male partner. Latina women have 28 percent higher adjusted odds.

The reasons for this disparity are complex and include biological reasons as well as social and cultural barriers. But we can’t even begin to address these barriers to infertility treatment without seriously grappling with the most obvious one: cost.

Most childless people in the U.S. who can’t conceive a baby or carry a pregnancy to term have not seen a doctor about it.

An initial consultation at a fertility clinic can cost hundreds of dollars, and the average patient going through IVF treatments will spend $24,373 in an 18-month period. Neither are likely to be covered by health insurance. The high cost of treatment and the fact that most insurance plans don’t cover the most effective procedures ensures that it’s mostly white, highly educated and rich people who can access infertility services.

But even among the women privileged enough to get some kind of care, only 3.1 percent had ever used assisted reproductive technology like IVF. During the most recently studied period, about 56 percent of women who sought medical advice stopped after the consultation phase or just got some basic testing done.   

We can’t know why most couples stop at basic testing or consultation, but one guess is that it’s all they can afford. Although IVF is a 40-year-old technology, and more than 8 million children have been born using these techniques, private insurers are loath to add IVF or any other new services to their standard coverage plans unless legislators force them to.

That’s starting to happen. Fifteen states have laws that mandate insurance carriers cover fertility treatments in some way, or at least offer coverage. But only six of those states offer meaningful access to treatments like IVF.

And only those who fit the current medical definition of infertility ― straight couples who have had sex for 12 months without conceiving ― even qualify for the few health insurance policies that do cover these treatments. That means LGBT couples, single people and those who have medical issues that will cause future infertility are locked out of life-affirming treatments like IVF.

That means the U.S.’s infertility treatment policies serve as a de facto referendum on who in this country gets to pass on their genes, give birth or be a biological parent.

Intentional or not, this status quo says that only certain kinds of people are worthy of making families, and only certain kinds of families deserve our support and resources.

One of the most common arguments that infertility advocates face about taxpayer funding for infertility treatment is the notion that poor people shouldn’t be offered extra help to have their children because then they would need extra help raising them. Or, as a health care policy analyst once put it to me, “nobody wants to help poor people have more kids.”

Indiana University law professor Jody Lyneé Madeira called this rationale an almost “eugenic argument” and compared it to the notion that we might be able to save more money if we let more people die at an earlier age.

“The drive to have families is often described as this biological drive. But there’s this dignity component as well, where even the least fortunate among us have the ability to live their life as they see fit,” said Madeira, author of the book Taking Baby Steps: How Patients And Fertility Clinics Collaborate In Conception. “If they cannot have families and can’t afford to adopt, that is a denial of their humanity as well.”  

Infertility treatment policies in the U.S. serve as a de facto referendum on who in this country gets to pass on their genes, give birth or be a biological parent.

In addition to the immorality of this lack of access, there’s also the fact that it’s self-defeating at a national level.

The birth rate in the U.S. has hit a 30-year low, and indeed, has been below the rate needed to replace the population since 1971.

For a country with political leadership that is simultaneously trying to limit legal migration while also freaking out about our record-low birth rates, we’re taking a really long time to come to the realization that if we want to bring our fertility rate back to population-replacement levels, we’re going to have to take a long, hard look at all the ways we make this country a hostile place to raise a family, whether it be a lack of affordable child care or a lack of access to infertility treatments.

Other countries that have already had their own demographic reckoning have come to this very conclusion. Denmark, which has a free public health care system for its citizens and a very low natural birth rate, fully funds assisted reproductive techniques, which are reportedly involved in 10 percent of all births there. In Japan, where nearly 1 in 5 couples struggles to have children, five percent of all births are made possible via IVF.

Meanwhile, in the U.S., only 1.7 percent of babies born every year are conceived through assisted reproductive treatments. Researchers like Dr. Eli Adashi of Brown University estimate that currently, the U.S. is only treating about 40 percent of the patients who might actually benefit from IVF. If it were covered, the number of treatment cycles would increase 2.5-fold.

America’s reluctance to help fund, or at least mandate health insurance coverage of infertility services, makes sense in the broader context of the country’s debate over whether health care is a basic human right or a privilege you have to earn. Seventeen states still haven’t chosen to expand Medicaid, so the notion that we should help pay for the treatment of nonfatal medical conditions like infertility seems like a long shot at best.

Legal scholars point out that American case law doesn’t bestow a legal right to make a family on its citizens. This is also a country where felons can trade time off their sentence in exchange for undergoing surgical sterilization, a trade that suggests the state doesn’t see anything wrong with coercing people into reproductive choices and exerting undue influence over future family planning.

Which is why, when I hold my daughter at night before bed or feel a swell of pride when I watch her learn something new, I know that there is something profoundly unjust about my immense happiness.

It’s not unfair in that abstract, cosmic way in which many of us must accept that we are born into privileged situations we did not earn and cannot control. It’s a far more searing and specific injustice because we have the means and tools to widen access to infertility treatments and we choose not to do so.

The author and her family in Richmond, California. Photo by Hasain Rasheed.
Rasheed Photography
The author and her family in Richmond, California. Photo by Hasain Rasheed.

To address infertility meaningfully on a national scale, experts say that a multifaceted approach ― which includes new laws, a radical change to fertility clinics and the lobbying of private health insurers ― is the only way to make the most effective treatments available to all.

IVF is no longer an acronym you have to explain to people at dinner parties. Infertility, while taboo in some spaces, is increasingly being discussed as the medical issue it is, rather than a shameful secret or a divine judgment.

This is in part thanks to the bravery of those who have experienced infertility and have gone public with their experiences ― a crucial step that infertility sociologist Larry Greil of Alfred University says moves infertility and its treatments “into the realm of normalcy.”

Now, one-third of adults in the U.S. say that they’ve either used fertility treatments or know someone who has. More than half of Americans ― 55 percent ― think that insurance should cover infertility treatments, including IVF, and two-thirds say that doctors should provide these treatments without regard to a patient’s income level. 

With this cultural change comes political change.

Even the least fortunate among us have the ability to live their life as they see fit. If they cannot have families and can’t afford to adopt, that is a denial of their humanity as well. Indiana University law professor Jody Lyneé Madeira

Several states are passing new laws that both widen access to infertility services and simultaneously expand the definition of who might need these medical treatments beyond those deemed “infertile.”

Thanks to small but passionate advocacy organizations like Resolve and the Alliance for Fertility Preservation, insurance coverage mandates in Connecticut, Maryland, Rhode Island, Illinois and Delaware give those with cancer and other medical issues access to fertility preservation services before undergoing chemotherapy or any other medical procedure that could sterilize them.

Meanwhile, in the private sector, a handful of innovative fertility clinics are dispensing with high-cost boutique business models and instead operating high-volume offices that still get comparable results while charging only half the cost.

And by 2019, two-thirds of employers in the U.S. are expected to offer some kind of fertility benefit to their employees ― in any family configuration ― in a bid to recruit and retain top talent.

But tilt your head the other way, and you’ll see signs that we’re retreating on reproductive rights issues, of which infertility treatment access is one.

More broadly, the Trump administration has been steadily eroding the Affordable Care Act and setting the stage for Roe v. Wade to potentially be overturned. Both outcomes could imperil access to infertility treatments, either because people will have less access to doctors in general or the medical techniques that create embryos during IVF will be condemned by anti-abortion politicians.

And new laws that make it harder for LGBT parents to adopt or try to endow embryos with legal rights make it very clear that only certain kinds of families are welcome in this country: those headed by straight parents who conceive children “naturally.”

Some scholars, like professor Greil, believe that if Medicare-for-all becomes a reality, so too could infertility-treatment-for-all.

Barbara Collura, CEO of Resolve, said she had no faith that a federal legislative process would solve this issue and that it is up to working people to petition their employers for infertility coverage. Over time, she said, this could establish fertility benefits as a standard part of health insurance coverage.

But like other massive social leaps forward, change could come in an instant. A court decision could find the right to reproduce, a people’s movement could demand change, an industry could find new ways to profit.

Until then, families like mine are taking up all the seats in fertility clinic waiting rooms.

IVFML Becoming Family is produced and edited by Anna Almendrala, Simon Ganz, Nick Offenberg, and Sara Patterson. Send us an email at IVFML@huffpost.com.

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