Private foundations are now helping couples and individuals seeking fertility treatments in a country where IVF costs more than anywhere else on earth

In 2016, after seven years trying to conceive, New York state assembly member Rodneyse Bichotte was pregnant with twins. At 13 weeks, she lost one in a miscarriage. At five months, she went into preterm labor, and rushed to a New York hospital.

Doctors turned her away, saying they couldn’t give her a bed because of insurance issues and because it was against “hospital policy” to admit pregnant women before 23 weeks. She was driven to another hospital, where her baby, Jonah Bichotte Cowan, died shortly after birth.

Now 45, with nine in vitro fertilization cycles behind her, and close to $200,000 spent on procedures and medications, Bichotte is determined to be pregnant again.

In many ways, she is a typical patient of in vitro fertilization, or IVF. She is highly educated, with an MBA and a master’s degree in electrical engineering; her salary of around $80,000 is 30% above the national median. Bichotte is also one of the lucky few whose insurance covered multiple rounds of fertility treatments.

After she reached her insurance policy’s limit, Bichotte spent $30,000 of her savings for one last cycle. When that failed, her doctor recommended trying donor eggs, a procedure that typically starts at $25,000.

“Even with the insurance coverage, there were a lot of other fees that I had to pay out of pocket,” Bichotte told me. “I just was drained.”

Her savings account emptied, and she turned to charity. In May of this year, she was awarded a $15,000 grant from Baby Quest, one of several dozen not-for-profit organizations that offer financial assistance to couples and individuals seeking fertility treatment in a country where it costs more than anywhere else on earth.

Americans are having trouble making babies. In 2017, the birth rate hit a record low, while the gap between how many children women say they want to have (2.7) and how many they are likely to have (1.8) widened to a 40-year high. In a recent survey, Americans said economic factors – the cost of childcare, the lack of paid leave, and general financial insecurity – influenced the decision to have fewer children, a phenomenon some scholars have labeled “structural infertility”.

As in European countries, Americans, especially women, are pursuing more education, marrying later, and bearing children later. In 2017, birth rates fell for teenagers and women in their 20s and 30s, but rose for women in their 40s, a period when their fertility is on the wane.

Medical infertility, defined as an inability to achieve pregnancy after one year of trying, affected an estimated 48.5 million couples globally in 2010, rich and poor alike, according to a 2012 study from the World Health Organization. In her new memoir Becoming, Michelle Obama describes being “inordinately lucky” that her health insurance at the University of Chicago covered most of the cost of the IVF she and Barack needed to conceive their two daughters. “It felt like having a high-stakes lottery ticket, only with science involved,” she wrote.

All of these patterns suggest demand for IVF, egg-freezing, and other assisted reproductive technologies, or ARTs, will continue to grow, a trend that has lured a wave of private equity money into the sector. But as the need grows, so have costs.

Facebook Twitter Pinterest Rodneyse Bichotte holds an urn containing the ashes of Jonah Bichotte Cowan, the child she lost due to complications with her pregnancy. Photograph: Ali Smith for The Guardian

According to patient-provided data aggregator FertilityIQ, the cost of a single round of IVF, including medications and genetic screening, has risen to around $20,700 in the US – nearly 34% of the median household income, although prices can be lower in some parts of the country and at a handful of clinics that offer a high-volume, lower-cost model. In Europe, the average price of an IVF cycle is $4,550 to $5,700, and most European countries fully fund or generously subsidize the procedure.

Explanations vary as to why fertility treatment has become so expensive in the US, apart from the overall high cost of healthcare. Dr James Grifo, the director of NYU’s Langone fertility center, said fertility drugs have become the biggest cost barrier, but also noted that many of the basic ingredients of an IVF procedure have become more costly. “Our reagents, our culture medias, our laboratory equipment, those things have all gone up significantly,” he said.

Still, for many, the instinct to reproduce lurks deep in our genetic material. When resources or insurance coverage permit, couples and individuals go to great lengths to conceive – pursuing multiple rounds of IVF, procuring eggs from donors, or hiring gestational surrogates to carry a pregnancy on their behalf. (Including legal and other fees, surrogacy can cost well over $100,000 if done domestically.)

According to the Centers for Disease Control and Prevention, nearly 264,000 ART cycles were performed in 2016, an increase of 73% from just five years prior. Despite advances in technologies such as egg-freezing, however, IVF cycles are still more likely to fail than not; just 25% of cycles in 2016 resulted in a live birth (although another 25% of cycles performed were intended for freezing or “banking”, and were not expected to result in a birth).

“People scrimp and save, sometimes they take second mortgages out, go into [their] IRAs, all sorts of things like that,” said Dr Jonathan Van Blerkom, a professor of molecular and cellular at the University of Colorado, the lab director at a Denver IVF program, and the inventor of a simplified IVF device intended to lower the cost of the procedure.

“And if they don’t get pregnant, which many don’t even in the best programs, they don’t have the baby – but they still have the debt.”

David and Jennifer Bross were also fortunate. She worked for an employer based in Illinois, one of just nine states that mandate insurance plans cover infertility treatment.

A year after the birth of their twins through IVF, they founded Parental Hope with $2,000 of their own money and an employer match of $1,250, which they used to set up the not-for-profit and host their first fundraiser. Since January 2016, Parental Hope has provided 24 grants, each covering a full cycle of IVF, but not the medications or add-on procedures such as genetic testing.

“We don’t want people to have to go into financial debt to have a family,” said Bross, who holds a large annual fundraising event in Cincinnati during National Infertility Awareness Week, and smaller events throughout the year. “You shouldn’t have to go out and take loans or borrow money or sell your car or whatever people do in order to make up tens of thousands of dollars in fertility treatments just to have a child.”

Pamela Hirsch was among the first franchisees of the Princeton Review test preparation company, which raised $59m when it went public in 2001. When her younger daughter learned, after three years of invasive, unsuccessful fertility treatments, that she had a bicornuate uterus and would need to use a gestational surrogate, Hirsch and her husband Miles offered to help pay for it. Their generosity produced two granddaughters.

Hirsch started Baby Quest in 2011 with around $50,000 of her own money; this past November, it surpassed $1.3m in financial assistance, a figure that includes cash grants for treatment, medications supplied, waived legal fees and discounts it negotiates with doctors on behalf of grantees. Hirsch receives mostly small donations from individuals, although she has started receiving larger donations from corporations and foundations.

“What bothers me is … this is an issue of class,” said Hirsch, who runs Baby Quest from her Los Angeles home. “I don’t think it’s ever fair to say to someone, ‘You can’t afford to have a child.’”

In the US, 37 not-for-profits offer financial assistance for fertility treatment, according to a forthcoming paper co-authored by Dr Eve Feinberg, a reproductive endocrinologist at Northwestern University. Half of these not-for-profits, many volunteer-run, have sprung up in the past decade; the oldest has been around for a quarter-century.

The paper found wide variation in the assistance offered, population served, and types of services covered. Some fertility not-for-profits are just for Jewish people; others only help patients of a certain clinic. Some welcome singles, others target couples. Some will subsidize elective egg freezing; one is dedicated exclusively to funding medical egg-freezing, which women undertake before undergoing fertility-threatening treatments such as chemotherapy.

Facebook Twitter Pinterest A sperm sample. Photograph: BSIP/UIG via Getty Images

The nature of the reward, and the eligibility criteria, also varies between charities.

Baby Quest, which is open to permanent residents in the US, including non-citizens, offers medication donated by Ferring and EMD Serono, two manufacturers of the medications used in assisted reproduction procedures, and also gets discounted pricing from certain pharmacies. Its monetary awards, given twice yearly, cover most of the treatment costs, but Hirsch likes to see potential parents put a little financial skin in the game. She also calls clinics to ask for discounted treatment; sometimes a doctor lops a few thousand off the bill.

Other fertility not-for-profits, like Parental Hope, direct patients to a specific clinic. With the discounted rate offered to Parental Hope by the Institute for Reproductive Health in Cincinnati, Bross can give out additional grants.

Feinberg and her coauthors question the sustainability of this approach. “While private foundations have made an impact on the lives of many individuals, a more permanent solution of increased insurance coverage for infertility services is greatly needed,” they wrote. A bill introduced in May, requiring insurers to cover infertility services, has stalled in Congress.

What forms does one fill out to win money to have a baby? The foundations have similar application processes, typically requiring tax returns and other financial information, such as itemized monthly expenditures; a cost breakdown of the required treatment; medical forms completed by a doctor; and a personal essay. A selection committee usually scores the materials.

Hirsch, a former teacher, is sensitive to how the essay component of Baby Quest’s application puts less-educated candidates at a disadvantage, compared with applicants who have been to college, who “write these amazing essays”.

“I could correct each essay with a ton of red marks, but the quality of the writing is not relevant,” Hirsch said. “It is the heart and spirit of the story.”

In 2017, Parental Hope switched from requiring a personal essay to asking applicants to tell their story in a six-minute video, a format Bross said helps the organization “get a feel for who they are”.

Dr Camille Hammond, who founded the Tinina Q Cade Foundation in 2005, used strategies from her medical training to design an evaluation process that could compensate for reviewers’ bias, with diverse groups of reviewers who evaluate the medical, financial and personal statement components separately.

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For applicants desperate for a chance to conceive, however, the application process can be agonizing.

Tiffany Barker, 33, is a special education teacher living in Los Angeles with her husband Pat, a writer and comedian. In February 2016, after nearly a year of trying to conceive, their doctor suggested IVF. Her first thought: “I’m never going to be able to afford this.”

One of her best friends from high school sent her to the website of Resolve.org, a national fertility advocacy group, which listed available scholarship and grant opportunities. Filling out the forms and crafting personal statements for the applications, Barker said, “felt like applying to college all over again”.

Barker, who was raised by a single mother and put herself through college and a master’s degree program with the help of student loans, worried about how to craft a compelling enough narrative, and whether her loans would count against her.

“It was … like, is my story sad enough?” she remembers. “Are you going to judge me because I have student loans, and you think I’m not going to be a good enough parent because I have loans that I’ll have to pay back for the next 20 years?”

Barker and her husband did consider adoption, a process that costs between $30,000 and $45,000 domestically, according to a recent survey by Adoptive Families magazine.

“We had to have that conversation too – like, what’s the endgame? What do we really want?” she said. “And we both just want to be parents.”

The Barkers’ first application, to a now-defunct Texas charity, was rejected, and Tiffany cried when she got the email. In June 2016, when they learned their application to Baby Quest had been approved, Tiffany cried again.

“That was the moment that my life was changing,” she said. “Someone felt like I would be a good enough mother to give me a chance. I have a perfect baby because of it.”

The question of who is a “good enough” mother has been contested for centuries, but rarely is it put so explicitly to a jury of one’s peers. The people who administer fertility grants stress that nearly everyone who applies is deserving; there is real pain in their voices when they discuss turning applicants down.

But the eligibility requirements – indeed, the exclusive nature of fertility treatment itself – limit the number of people who might benefit. Many fertility organizations require an applicant have health insurance, to cover the costs of the pregnancy and birth. Applicants must earn enough to provide for a child, should the treatment work. And people often learn about grant opportunities through their fertility clinics.

“The fertility clinic is problematic only because there’s a certain demographic that goes to get fertility treatments,” said Dr Hammond. “The really poor people self-select – they decide, this is something I’m not going to be able to do, so they opt out even before they begin.”

For decades, feminist scholars have studied how structures and policies shape reproductive labor. In 1986, feminist scholar Shellee Colen coined the phrase “stratified reproduction” in a study of West Indian nannies working for wealthy New York families. Two decades later, London School of Economics sociology professor Charis Thompson described the political and social regimes that encourage some populations to reproduce while discouraging others as “selective pronatalism”.

Since the mid-2000s, researchers have documented a growing disparity between the birth rates of the ultra-rich and the middle-class, noting a rise in three- and four-child families among the wealthiest 1.3% of US households.

What does selective pronatalism look like in practice? Comedian and author Tina Fey captured one end of its spectrum in a 2011 New Yorker essay: “Four beautiful children named after kings and pieces of fruit are a way of saying, ‘I can afford a four-bedroom apartment and a hundred and fifty thousand dollars in elementary-school tuition fees every year. How you livin’?’”

At this end of the spectrum, sought-after workers luxuriate in a benefits arms race, as the largest employers expand fertility coverage to attract highly educated, family-minded millennials. In 2018, 28% of employer-sponsored health plans at firms with 500 or more workers offered IVF coverage, according to workplace consultancy Mercer, and 44% of firms with 20,000 workers or more. Facebook and Apple’s 2014 announcement that employees could freeze their eggs on the company dime may have launched another round of benefits brinkmanship; the same survey found 17% of companies with 20,000 or more workers now cover egg-freezing.

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At the other end, you have women like Rodneyse Bichotte, who, despite her education and elected office, was turned away by doctors who viewed her as, in her words, “some random black woman”.

This summer, with her Baby Quest grant and $7,000 of her own money, Bichotte tried her luck with donor eggs, of which seven were produced. Five fertilized, three made it to the blastocyst stage, and only one was normal, but it grew too slowly.

“I spent all that money for basically almost nothing,” she said.

She is exploring what options remain with doctors at Weill Cornell Medicine.

While her private struggle continues, Bichotte is waging two public campaigns to give others a better shot at reproduction. The Jonah Bichotte Cowan Law, a bill she put forward in July requiring hospitals to treat any woman experiencing early labor, will hopefully pass in the new year. Another bill she plans to cosponsor will require insurers operating in New York state to cover infertility treatments.

“I think the solution is getting our states to cover IVF,” she said. “That’s how I can help contribute … to make this law that could change everybody’s lives.”

This article was supported by the Economic Hardship Reporting Project and the Puffin Foundation.