May 2012 Features

Point of View: Pro-Create

Putting infertility treatment on the reproductive rights agenda.

By Juliana Belding ’01 and Elissa Klinger ’01

 

Illus

Illustration by Jon Krause

JULIANA’S STORYIt’s 7:30 a.m. on a weekday. I sit in a nearly empty waiting room at a satellite location of Brigham and Women’s Hospital at Patriot Place. The entertainment-plex also houses a football stadium, shopping mall, and movie theater, but I am waiting for a blood test and a transvaginal ultrasound, part of my treatment process for infertility. It’s one step in a routine that lasts 10 to 12 days on average: my partner prepares my nightly hormone shot around 9 p.m.; I go in every few mornings for monitoring; both of us wait for the one call that will reveal that my follicles are ready—enough, but not too many, of the right size. As soon as that happens, at midnight my partner will give me a shot of human chorionic gonadotropin to trigger their release and we’ll go in for intrauterine insemination. In other words, it’s time for the potential conception of our child.

On weekends, I travel to the main hospital in Boston for even more monitoring. Here the waiting room is full of women. Some are accompanied by partners, others not; some in sweat suits, and some in pantsuits. We are of many ages, races, and all of us are partaking in the alphabet soup of infertility treatments (ICI, IUI, IVF, etc.). Although we are clearly not alone in dealing with infertility, it still feels lonely here. The Asian woman next to me chews her gum frantically, and the older white woman across the room flips through the pages of a magazine without reading them. Never once during my six rounds of treatment have I seen any of us talk with each other. Only with my partner and, occasionally, with the medical staff do I talk about what it feels like to have this intimate, human ritual of conceiving become elusive and exhausting, medicalized and monetized. Except for the blare of the TV, this waiting room is silent.

BREAKING THE SILENCE

Women’s reproductive rights have long been a heated topic of national debate. Abortion and, most recently, contraception in its various forms are regular topics of discourse in the news, on social media sites, and in the halls of power. But this focus is only part of the story for many women. When a woman is ready to carry a child to term—whether single or married, lesbian or straight, or any and all identities in between—the collective fervor fades, the rallying ceases. Women must face their difficulty or inability to conceive on their own and often at their own expense, in spite of their “comprehensive” health-insurance plans.

Personal experience, however, has taught us to view the issue of infertility as a place to struggle with larger issues of womanhood and family, of our bodies and their capacities and limits, of our life choices and the life circumstances that arise beyond our choosing. But we can’t simply leave these experiences in anecdotes. We view infertility not just as an issue of personal quality of life, but as a medical and societal issue that needs to be part of the national discourse about women’s reproductive rights.

MYTHS AND MISCONCEPTIONS

The problem of infertility, whether primary or secondary to disease, is estimated to affect as many as one in eight U.S. women in their lifetimes. (This is statistically on par with a lifetime risk of breast cancer.) Despite this high prevalence, we would surmise that few women know what treatment options entail, either physically or financially, until they themselves have landed in a doctor’s office. We would argue that the silence around infertility leads to pervasive misconceptions about causes and treatments, and about women’s reproductive potential more broadly. Here are just a few examples.

Getting Pregnant Is Easy for Everyone Else

Many women have the impression (from family, friends, middle-school sex education classes) that they can get pregnant as easily as taking a second look at the opposite sex. In fact, the 2002 National Survey of Family Growth (NSFG) found that about 12 percent of women of childbearing age (15 to 44) in the U.S. have sought assistance for infertility. And a fertile couple has roughly only a 20 to 25 percent chance of conception during one menstrual cycle of unprotected sex.

Infertility Only Affects Women Who Wait Too Long

Fertility does decrease with age; however, the hype over the “infertility epidemic” in older women is partially misplaced. A 1988 Congressional study reported that the only age group for which infertility rates have increased since the 1960s is women ages 20 to 24, due mainly to increases in the rate of sexually transmitted infections (STIs) like chlamydia and gonorrhea. These STIs cause 50 percent of preventable infertility, according to a 2000 report to Congress by the Centers for Disease Control and Prevention. Furthermore, poor health in general can contribute to infertility. All this means that socioeconomic factors (in some cases linked to race as well) are as important as age in considering whom infertility affects.

Infertility Treatment Is All About IVF

At the most involved and expensive end of the infertility-treatment spectrum is the use of assisted reproductive technology, such as in vitro fertilization (IVF), which involves removing eggs from a woman’s body, combining them with sperm to make embryos, then inserting the embryos back in the woman’s body. However, IVF is rather rare, with about 3 percent of women being treated for infertility using this process. This is not only because IVF is expensive ($12,000 on average for a single round), but also because other, less complicated and costly treatments often prove effective. Much more common are surgery (8 percent) and hormone therapy to stimulate egg production combined with various insemination methods (46 percent). (Percentages from the 2002 NSFG report.)

Infertility Is a Medical Issue, Thus Covered by Insurance

The medical community has not reached consensus on how to view infertility—a quality-of-life issue, a disease, or a disability? With this ambiguity comes variation in how infertility is covered by insurance, if at all. Even though the U.S. Supreme Court ruled in 1998 that reproduction is a major life activity and thus infertility is a disability as defined in the Americans with Disabilities Act, no federal standard on coverage exists to date.

Only 13 states have laws requiring coverage of infertility diagnosis and treatment. But even in these states, restrictions on coverage and access can range from proof of marriage (Rhode Island) to an explicit exclusion of IVF (New York and California).

PART OF THE AGENDA

The family remains a fundamental part of our society, even as its definition has broadened. The potential to conceive remains a fundamental part of being a woman, even as it is less commonly viewed as our defining function. For these reasons, we must add infertility and infertility treatment to any reproductive-rights agenda that fights for women’s agency over their own bodies and, by inclusion, their fertility.

By framing infertility as a reproductive-rights issue, we can begin a dialogue that emphasizes that the prevention of infertility is intrinsically linked to health-care access, including treatment and prevention of STIs and access to hormonal contraception. The latter can protect women’s reproductive potential by “normalizing” women’s menstrual cycles, thereby significantly reducing the risk of ovarian and endometrial cancers, among other complications that can affect the female reproductive tract. From a health-policy angle, we might consider what a reasonable minimum standard of coverage for infertility would look like by examining the data on usage and cost from states that do require some degree of coverage. And no conversation about infertility treatment and options would be complete without increasing awareness about alternate paths to motherhood such as adoption and surrogacy.

We encourage women to be aware of their choices and options across their reproductive lives and to help break the silence around infertility in particular. This means sharing personal experiences and rallying around infertility-treatment awareness and access, in addition to the more traditional reproductive rights platforms. Ultimately, this means considering ways to optimize women’s reproductive potential so all women are able to make truly informed decisions about their reproduction.

Juliana Belding is an instructor in mathematics at Harvard University. She recently gave birth to her and her partner’s first child. Elissa Klinger is a research project manager at Brigham and Women’s Hospital headquartered in Boston, Massachusetts.

Infertility: A Global Perspective

Once the purview of wealthy nations, assisted reproductive technologies have become available in countries representing a wide range of economic and sociocultural contexts. However, “the technology and the uses of the technology have usually preceded the regulation of them almost everywhere,” says Melissa Pashigian, associate professor and chair of Bryn Mawr’s Department of Anthropology. A scholar of the social politics of reproduction, Pashigian discusses how cultural, ethical, and economic issues surrounding this subject are playing out globally.

How does global health policy address the issue of infertility?

Melissa Pashigian: In many ways it doesn’t right now, but there are players trying to create health policy that will address infertility globally. One instrumental organization is the World Health Organization (WHO) in its work with the U.N.’s Millennium Development Goals. WHO is thinking about infertility as a health need and how it might fit within goals for reproductive health. One avenue is to associate it with family planning. This would require broadening family planning’s traditional focus—reducing fertility and population growth rates—to a broader idea of how to plan families.

In its World Report on Disability, WHO has included a section on infertility in which it is recognized as a disability. But they link it primarily to unsafe abortions, maternal sepsis due to encounters with the medical establishment, or complications from STIs. The report does not address primary [or idiopathic] infertility. Specific policy shifts would need to occur before access to infertility treatment can become a right, or even a goal, in many countries.

Why has infertility not generally been a part of discussions in the U.S. about expanding reproductive rights?

MP: One reason might be that the topic of abortion generally enters into any discussion about reproduction in this country and discussions about extra embryos in IVF can be controversial. Infertility services in this country are part of market-based health care and frequently not covered by insurance, so some believe that only those who can pay for such services deserve to access them. Related to this is that infertility is not viewed as a life-threatening medical condition. In addition, infertility gets sidelined as other salient health issues emerge in this country that might overshadow it. For example, right now we’re talking about health insurance that would potentially cover many more people than at present, and that is a much more macro issue than any specific health concern.

How do cultural and ethical concerns shape the discussion about infertility?

MP: One issue is pronatalism and culture. Israel, for example, has wide-ranging [infertility] services that are covered by the state. Access to infertility treatment is partly about reproductive autonomy, but it is also vested in historical circumstances that have given rise to beliefs about reproducing the state and reproducing Israeli citizens. Also, around the world, varying ideas about birth shape practices surrounding infertility. In Vietnam, origin myths have given rise to beliefs about the importance of the birth mother, and you see that belief replicated in the current national ban on surrogacy, which makes legally consistent the idea that the woman who gestates a pregnancy is the rightful mother.

In the U.S., however, surrogacy gets regulated on the state level so there is a lot of variation. This is where we get debates about ethics. Surrogacy in this country is typically construed as a process of gift-giving, basically removing it from the context of commercialization. Also in our country the tension between viewing an embryo as a life or not shapes discussions about assisted reproductive technologies. In IVF there’s production of multiple embryos, so some groups are concerned with any sort of destruction of embryos in the process.

What factors will impact approaches to infertility treatment in the future?

MP: Globally a number of researchers are working on the production of lower-cost IVF, so you can imagine what that might mean. If IVF can be done in contexts without sophisticated embryology labs or in places that do not have as extensive a medical infrastructure, the hierarchical structure of income and debt accumulation in determining access to these technologies may be destabilized. The question is how will people respond to low-cost IVF? Again, the answer depends on the cultural context and the legal context in different countries.

 

 

Comments on “Point of View: Pro-Create”

  1. RE: PRO-CREATE

    My experience with infertility took place in the 1950s and might be of interest to today’s women who have an “alphabet soup” of fertility treatments. Infertility, at that time was never on anyone’s agenda in health care. Apparently the only thing unchanged is the silence and lack of eye contact in the waiting room.

    I went through several years of testing procedures to determine why “I” could not conceive. No one suggested testing my husband; infertility was a woman’s problem. And, it was a problem not to be discussed with anyone as if it were a stigma.

    Eventually, I located a specialist in Philadelphia who was having success treating couples with a very basic, somewhat embarrassing in that era, procedure. It involved artificial insemination using the husband’s sperm. It took a few months until we had our first success. A few years later we had our second child with the same procedure.

    Nancy G. Harper
    MSS ’78

Leave a Comment