The big freeze, p.15
The Big Freeze, page 15
“The sex ed you never got,” Clue’s website touts. Clue’s customer service team receives thousands of health-related inquiries from users about sex, menstruation, fertility, and more. The most common questions: Why is my period late? Why is my cycle irregular? Do I need to seek medical care? Because being on the Pill stops me from ovulating, I’m honestly not always sure whether changes in my body from month to month are a result of the synthetic hormones or if they have nothing to do with my non-cycle at all. But over the years I’ve switched up the brand and type of birth control pills I take, and every time I do, my body takes a while to adjust. Keeping track of symptoms helps me identify patterns and better understand hormonally influenced changes to my body—a small but very real comfort. When I open the app and input a piece of information—that I took my pill that morning, say, or that I broke out with a bout of acne—a little wheel at the top spins and it tells me “Clue is getting smarter…,” and that makes me feel a bit more tuned in to my body and all that’s going on in places I cannot see.[*7]
Fertility tracker apps aren’t perfect. When researchers at the University of Washington collected data from two thousand reviews of popular fertility-tracking apps and surveyed nearly seven hundred people about them, they found that users were dissatisfied with the apps’ lack of accuracy and their assumptions about their sexual identity. Most are geared toward heterosexual and cisgender women, many responded, and they disliked the emphasis on pink, flowery interfaces at the expense of customization.
And it’s true. A major drawback of period-tracking apps is their propensity for inaccuracy. Many of the apps assume that a user’s most fertile days are her ovulation date and the five preceding days. But, again, this so-called regular cycle—meaning she always gets her period every twenty-eight days—is not the norm for most women. Also, ovulation tends to shift from month to month. And so the fertile window the app tells her could very well be wrong. The more carefully and consistently the user tracks her cycle, the more accurate the app will be. The app’s estimations improve over time because the longer a user tracks and the more information about her cycle she supplies, the more data the app’s algorithm has to work with. Most of the apps let you program them to send you input reminders, as I’ve done with Clue. Still, it can be easy to forget to be diligent about updating and engaging with the app every day. If a woman is using the app as a reliable digital record of her menstrual cycle, the stakes are low if she misses a day here or there, especially if she uses hormonal birth control. But if she’s relying on the app to avoid getting pregnant and doesn’t use any form of birth control, being just one day off can result in an unintended pregnancy.
Another drawback is privacy concerns. Millions of women around the world use apps to track their cycles, and that treasure trove of data is often passed on to third-party companies such as Google and Facebook. Apps in general offer very little in the way of data privacy rights when it comes to the information that’s shared with them, and fertility apps are no exception. Some of the apps allow users to remove their identity from the data it has stored on them, but many don’t, meaning that a user’s information isn’t anonymous. A 2022 Consumer Reports study that evaluated privacy practices and data security for several fertility apps concluded that while some make it easy for users to understand what information is collected, all the apps “share some user data with external partners for purposes such as targeted advertising. And then those partners may share or resell a user’s personal information to third parties, who of course make no promises to the user about how they handle it.”
No woman who tells an app whether she had unprotected sex or an abortion wants such deeply private information shared in a way that could identify her. This became a major issue in the summer of 2022, when data privacy issues and fertility-tracking apps took on a new, scarier meaning after Roe v. Wade’s reversal. This sparked action in some states with regard to safeguards for consumer health data collected by companies, but new federal regulatory frameworks are needed. While the United States has strict privacy laws that govern how entities such as hospitals and health insurers share information about patients, these laws don’t apply to mobile health apps, which fall under consumer privacy laws—and offer much lower standards of protection. In other words, the personal health data people enter into consumer apps isn’t protected by federal safeguards for patient privacy—including, notably, HIPAA, the federal health information privacy law.
There is a plus side, though, to anonymously sharing information of this nature, and that’s the data it provides for scientific and medical research about menstrual and reproductive health. Modern medicine was developed with male physiology as the default, and women have historically been underrepresented in medical research, clinical trials, and biology textbooks; it wasn’t until 1993 that including women in federally funded clinical research was required by law. A 2022 McKinsey report found that just 1 percent of biopharmaceutical and medical technology investment goes toward female-specific conditions beyond oncology. One percent. Considering that people with ovaries constitute nearly half of the world’s population, it’s both nonsensical and infuriating that female health remains so overlooked and underfunded.
Several fertility apps say that medical researchers use anonymized information from their apps to study female-focused health concerns. Sharing sensitive health data after telling users their information would be kept private isn’t okay.[*8] But the benefits of personal data being put to good use shouldn’t be ignored, either. The New York Times pretty much nailed it in an article about the troubling data-sharing practices of Flo, a popular period tracker: “And here lies the crux of the problem with women’s consumer health technology, or ‘femtech’ as it is known in investor speak: The sheer volume of data collected in apps like Flo is ripe for privacy violations, but that same data may also open the door to unraveling some of the biggest, understudied riddles of female health.”
Private Little Revolutions: The Truth About Hormone Testing
At her home in New York, twenty-six-year-old Margaret Crane sat at her desk, assembling a plastic paper-clip holder, a test tube, a dropper, and a small angled mirror. It was 1967, and Crane, a freelance graphic designer, had recently been hired by the pharmaceutical company Organon. While touring the company’s lab in West Orange, New Jersey, she noticed multiple lines of test tubes suspended over a mirrored surface. She was told they were pregnancy tests, and that when combined with a pregnant woman’s urine, the test tube would display a red ring at its base. “I thought how simple that was,” Crane recalled of seeing the tests for the first time. “A woman should be able to do that herself.”
Margaret Crane wasn’t a scientist, nor did she have a chemistry background; the company had brought her on to work on a new cosmetics line. But she went home inspired, and set to work developing a simplified version of the test. Her first attempts to design the device were unsuccessful, and she was frustrated. Then one day she sat at her desk looking absentmindedly at a stylish plastic box she used to hold paper clips. She realized the container was the perfect size to hold the components needed for the test. A few months later, she presented her kit—it resembled a toy chemical set—to Organon, and in 1969 the company applied for a patent in her name. Two years later, her home pregnancy test, named Predictor, went on the market in Canada, and then, after gaining FDA approval in 1976, in the United States. When it hit the shelves, the Predictor cost $10, the equivalent of about $50 today.
The home pregnancy test was one of the most revolutionary products of the twentieth century. Before Crane invented it, women had to go to their doctor’s office and wait two weeks or more to get their results. With the Predictor, women could find out if they were pregnant in as little as two hours, in the privacy of their own bathrooms. Today’s at-home pregnancy tests are the size of Popsicle sticks and deliver results within minutes, but they work on the same principle of detecting hCG, a hormone found in high concentrations in a pregnant woman’s urine.[*9]
“Unlike medical tests that reveal something otherwise unknowable about a body, a pregnancy test can only speed the delivery of information,” writes Cari Romm in an article about early home pregnancy tests in The Atlantic. “Regardless of who pees on what, a pregnancy has other, more obvious ways of making itself known with time. The home pregnancy test, then, wasn’t just about knowing; it was about taking charge, a sentiment that fit in nicely with the ethos of the time.” When the Predictor and a handful of other similar tests came to market, Our Bodies, Ourselves, the seminal book about women’s health and sexuality, was six years old and abortion had been legal in the United States for three. Early advertisements for home pregnancy tests emphasized what they offered beyond a yes/no pregnancy result: privacy, autonomy, knowledge of one’s body. A 1978 print ad for an at-home test called it “a private little revolution that any woman can easily buy at her drugstore.”
But, as Romm notes, not all of the doctors, who saw their authority being overthrown, were happy about a changing status quo. In an editorial published in The American Journal of Public Health in 1976, one physician argued against the use of home tests: “I feel that the reputations of both the commercial concerns and the profession of medical laboratory technology will suffer unless legislation is introduced to limit the use of such potentially dangerous kits.” In a note following the piece, the journal’s editors were firmly on the side of the tests: “Not everyone,” they wrote, “needs carpenters to hammer in their nails.”
* * *
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At-home pregnancy tests are now ubiquitous, and other private little revolutions have joined their ranks. In addition to testing their pregnancy status, women can now also test their fertility from the comfort of their couch. Understanding your fertility hormones now, the thinking goes, gives you more options later. Several online companies and fertility clinics now offer ways to do diagnostic fertility testing at home. The tests, taken via a blood sample, work by checking the levels of hormones associated with egg production and ovulation. I mentioned FSH and LH earlier, two of the hormones that concern fertility. Let’s recap those and get into a few more:
Anti-Müllerian hormone, or AMH, is secreted by the small follicles found in a woman’s ovaries. The level of AMH in the blood helps to approximate her egg supply.
Follicle-stimulating hormone, or FSH, is responsible for stimulating egg growth and starting ovulation.
Estradiol, or E2, a form of estrogen, is one of the primary hormones tied to ovulation and regular function of reproductive organs. Along with FSH, it offers clues on the state of a woman’s ovarian reserve, which is a fancy word for egg count.
Luteinizing hormone, or LH, is another key hormone responsible for ovulation. It also regulates the length of a woman’s cycle.
Thyroid-stimulating hormone, or TSH, regulates thyroid health. The thyroid plays a role in metabolism, heart function, the nervous system, and more, and affects things like ovulation, mood, weight, and energy.
Free thyroxine, or fT4, plays a role in thyroid health and is often tested alongside TSH.
Testosterone, or T, is, in women, secreted in small amounts by cells in the ovaries and contributes to ovarian health, bone health, mood, and libido. Recent research suggests it also plays a key role in which follicles develop, and are ultimately recruited, each month.
Prolactin, or PRL, stimulates milk production and pauses ovulation after a woman gives birth.
Having hormones tested by a reproductive endocrinologist at a fertility clinic can cost anywhere from $800 to $1,500. Products such as Modern Fertility’s kit—the company calls it “the most comprehensive fertility hormone test you can take at home to be proactive about your fertility”—retails at $179, as of this writing. The average Modern Fertility kit user is thirty-one, and after she does the at-home finger prick test and has up to eight hormones analyzed, she receives her clinician-reviewed customized report, which is based on her hormones, age, birth control, health survey, and latest research by physicians. She can then opt to have a one-on-one consultation with a fertility nurse (at no extra cost) to discuss her results.
It’s remarkable, really, that a few drops of blood can tell a person so much. Testing a woman’s hormones can help identify if there’s an imbalance that could get in the way of the ovaries releasing an egg, or that could be affecting more than just fertility; hormone imbalances can impact weight, sleep, and even generally how a person feels. The tests also shed light on what a woman’s timeline might look like—for example, if she could hit menopause earlier or later than average.[*10] And they offer clues with regard to egg freezing or IVF outcomes, such as if the user can expect to collect more or fewer eggs than average in these procedures.
I first spoke with Modern Fertility’s Afton Vechery in 2019. She and her co-founder, Carly Leahy, had started the company in Vechery’s apartment two years earlier. No one was talking about “proactive fertility.” But, Vechery said, “we were hell-bent on bringing this thing in the world because we believed with every ounce of our bodies that it was our right as women to have power over our reproductive future.” Modern society is much more focused on preventing pregnancy than on planning for it, and this was at the heart of what Modern Fertility hoped to change. They built Modern Fertility with a specific demographic in mind: people with ovaries who were not yet actively trying to conceive. A major part of the company’s message became: We don’t accept “wait and see” as an answer in any other part of our lives—and we won’t accept it with fertility. Like many other female femtech founders, Vechery and Leahy saw reproductive health as a mainstream wellness issue, something that can be tracked and monitored, much like how much sleep you get or how many steps you take.
How difficult it was to access and afford fertility hormone testing was another thing Vechery wanted to change. Most women don’t think to ask their primary care doctors or gynecologists about their ovarian health. When Vechery first tested her fertility hormones, she was billed $1,500 out of pocket and had to have multiple discussions with doctors to understand the results—a major one being that she had undiagnosed PCOS. Hearing Vechery’s frustrating tale about trying to get a full hormone assessment, I thought about a friend of mine who, when she was twenty-eight, was able to get a basic diagnostic fertility workup only after she lied to her gynecologist, saying she’d been trying to get pregnant for a year. Most insurance plans do not cover proactive fertility testing. Initial diagnostic testing sometimes is, depending on where you live and your health insurance plan, but qualifying for coverage often requires an infertility diagnosis. And to obtain that, couples generally have to prove to their doctor and insurance company that they’ve been trying to conceive for at least one year (more on this in chapter 9). Single women who are not currently trying to conceive but are trying to gain valuable insight into their fertility are usually out of luck.
Kindbody, a health and technology company that provides fertility, gynecology, and family-building care, is also in the business of DIY fertility. I’ll talk more about Kindbody in the following chapter, but in addition to its brick-and-mortar locations, the company has mobile clinics in several cities, where it invites potential clients to hop aboard a cushy, bright yellow van to have an exam and fertility testing done, sometimes for free.[*11] “Reproductive health is the only vertical of healthcare where you wait until something bad happens before taking any steps to correct it,” said Gina Bartasi, Kindbody’s founder and former CEO, in an interview. “It’s backwards. We’re here to change that.” In the same way a person doesn’t wait to have a heart attack to eat well or exercise, Bartasi wants to help consumers take more initiative in learning about their fertility. In 2022, the company began selling at-home fertility hormone tests for both women and men, in addition to other pre-conception, pregnancy, and postpartum products. The launch of Kind at Home, as the company’s consumer products division is called, is part of the company’s goal to be the single door for all fertility healthcare.
At-home or in-van fertility tests have their drawbacks. They can’t detect every type of hormone that plays a role in fertility, nor can they diagnose other health conditions that could be affecting a woman’s fertility. The tests often don’t account for women with irregular cycles. And for women on hormonal birth control—who are preventing pregnancy by manipulating their hormone levels, thus influencing their body’s usual levels—the tests can typically assess only two of the eight hormones I listed above: AMH and TSH. In any case, testing fertility hormones in isolation isn’t as helpful as actually looking at the ovaries and the number of follicles they contain, which renders the results of a fertility hormone test, particularly AMH and FSH levels, more useful and provides a fuller picture.[*12] During a transvaginal ultrasound, a fertility doctor counts the small resting follicles to see how many eggs a woman has waiting in the wings. The antral follicle count, or AFC, is a good predictor of a woman’s egg supply that month—known as ovarian reserve.[*13] Taken together, the ultrasound and the blood work are what’s known as ovarian reserve testing. It refers to the number of follicles in a woman’s ovaries and gives an indication of how her ovaries might respond when stimulated with hormone medications used in ART procedures.
Ovarian reserve is part of the overall picture of your fertility health; understanding it in context is important. Your age, lifestyle, and medical history are also important factors in determining how likely you are to get pregnant. Ovarian reserve testing is a standard component of an initial assessment at any fertility clinic because it provides a helpful baseline for anyone considering egg freezing or IVF; every egg freezer has her AMH and other fertility hormones tested and her ovaries examined in order to assess how she might respond to fertility medications. But for a woman who hasn’t yet tried to get pregnant and who is wondering about her current natural fertility, an AMH value isn’t all that helpful in that context. While a woman’s AMH level can help estimate the number of follicles she has inside her ovaries, it cannot determine exactly how many eggs she has or, crucially, what condition those eggs are in. It’s also not necessarily a good indication of when a woman ought to freeze her eggs. This is the biggest misconception concerning ovarian reserve and especially AMH testing: that it is a “female fertility test.” While ovarian reserve testing offers some valuable insight into a woman’s fertility and a sense of potential outcomes if she undergoes egg freezing or IVF—how many eggs her ovaries might yield when stimulated with fertility drugs—it is not an accurate predictor of a woman’s ability to conceive through sex now or at a specific point in the future. This crucial fact is missing from virtually all the hype around fertility testing.
