First comes love, then comes marriage, then comes baby in a baby carriage! This familiar playground song anticipates the best intentions of adult life. Certainly there can be no greater pleasure for a couple than welcoming a child. And in many cases there is no greater sorrow than infertility. If one or two years pass without a pregnancy, a couple can experience deep feelings of loss, anxiety, depression, conflict and stigma.
But there is much that we do not understand about the anguish of infertility.
First of all, how common is it? Even the experts can’t give a simple answer. According to the American Society for Reproductive Medicine (ASRM) the peak body for IVF clinics, about 12 percent of reproductive-age population in the United States is affected by infertility – about one in eight couples. This rate is matched by most infertility studies throughout the world.
The conventional wisdom is that infertility is increasing. But is this really so? Surveys done by the Centers for Disease Control and Prevention (CDC) provide one measure of the American data on infertility. These surveys, first done in 1965, were last done in 2002. Curiously, they show a relative decrease in infertility from 11.5 percent in 1965 to 7.4 percent in 2002.
What lies behind this number, though, is complex. The prevalence of infertile couples depends on factors such as the age distribution of the population, the age at which couples begin their intended childbearing, the type of contraceptive used before attempting to conceive, and the time interval into which couples compress their intended childbearing. All these may influence the results of the survey.
Another way to approach the issue is to ask how many women seek fertility care. In the US, as in many countries, over 50 percent of surveyed women have sought fertility care of some type. This could be reflected in the prevalence data in that more women seek care faster and reach resolution of their concerns faster. This data is why the World Health Organization recognized infertility as a public health issue in 2001.
This is also reflected in the increase in the use of advanced reproductive technologies like IVF. The CDC collects annual data from fertility clinics in the United States. The number of fresh IVF cycles in the US has grown from less than 46,000 in 1995 to just under 150,000 in 2010. IVF is seen as cool now that celebrities like Giuliana Rancic, Khloe Kardashian, and Celine Dione have all been treated — with variable results.
Infertility as a disease
Next, can we describe infertility as a disease? The ASRM responds with an emphatic Yes. “No one can be blamed for infertility any more than anyone is to blame for diabetes or leukemia,” it says. Of course, it is in the ASRM’s interest to promote the notion that infertility is a disease which requires medical intervention. Certainly there are congenital male and female disorders which explain many cases of infertility. But classifying all infertility a disease can be misleading.
In many cases, infertility is a consequence of lifestyle choices in a person’s younger years – promiscuity, liberal use of contraception, delayed childbearing, drug use, smoking, and so on. There are women in their 40s and 50s who desperately want to become pregnant and cannot (without the help of an IVF clinic). Should they be described as suffering from infertility? Fertility diminishes with time for women (and men), and far more rapidly than most women think. So, in a sense, one “cure” for infertility is to have children earlier in the life cycle.
There are some thought-provoking parallels with obesity. Both may result from lifestyle choices, may increase with age, and may require expensive technology to overcome. But when the Institute of Medicine had to decide whether obesity should be included in the list of essential health care benefits in the Obama Administration’s Patient Protection and Affordable Care Act, it didn’t. Most insurers do not cover obesity treatment.
Similarly, insurers do not cover infertility treatments freely. Only 15 states cover infertility treatment. So it is not regarded as a disease by the bean-counters. And from a public-policy standpoint, they have a point. Unlike obesity or other chronic diseases, infertility poses no threat to the patient’s physical health if it is left untreated. It does not directly affect the daily life of a couple.
Infertility as a disability
Perhaps because the preponderance of medical opinion (outside of the ASRM) is against describing infertility as a disease, there has been a shift towards classifying it as a disability – which is a legal issue. Resolve, the leading US infertility support group, has lobbied for infertility to be included as an essential health care benefit through its advocacy group, the Center for Infertility Justice. It is seeking to cure in the courtroom what cannot be cured in a surgery.
The US Supreme Court may have endorsed this interpretation of infertility with a 1998 decision, Bragdon v. Abbott. The Court used the deterrent effects of HIV upon a woman’s ability to reproduce rather than the debilitating effect of the person’s ability to fight off and survive the disease. This subsequently led to a series of cases which tested and codified infertility as a disability and a right. In 2008, amendments to the Americans for Disability Act went into effect. These classified physical or mental impairment of reproduction as disabilities.
Viewing infertility as a social justice issue rather than as a medical matter could have far-reaching consequences. First, women might not feel personally responsible for safeguarding their fertility, since the government has guaranteed fertility treatment as a human right.
Second, women might demand this right. In recent weeks much publicity has been given to an Indiana couple seeking damages under the Americans for Disability Act. Emily Herx, a former teacher at a Catholic school in Fort Wayne, Indiana, has sued the school and the local Diocese over IVF discrimination. When she asked for time off to undergo an IVF cycle in 2011, she was told that IVF was against Catholic teachings and her teaching contract was not renewed. Indiana is not one of the 15 states that mandate insurance coverage. The US Equal Employment Opportunity Commission upheld Herx’s complaint in January. The upshot of this could be that employers will be required to cover infertility treatment whether or not the inability to conceive is strictly medical or largely social.
Fertility as a personal responsibility
Unfortunately there will always be couples who are unable to conceive, no matter what doctors do. The oldest description of infertility is 4,000 years old and comes from the Bible: “And when Rachel saw that she bare Jacob no children, Rachel envied her sister; and said unto Jacob, Give me children, or else I die.”
But all the evidence suggests that in our society lifestyle factors keep more people from having children than purely medical factors. The ASRM says that 12 percent of female infertility is due to weight issues and 13 percent to smoking. There is also a continuing incidence of sexually transmitted infections, such as chlamydia, which have a clear relation to infertility.
Societal and behavioural changes in the last 50 years have affected the rate of fertility. A trend toward delayed childbearing is a significant factor. The mean age of first births among women aged 30 years or over has increased more than six-fold between 1970 and 2002 — from 3.9 percent to 25.1 percent.
This is clearly related to the rise in the female workforce participation and longer time spent in college. Between 1970 and 2020 completion of four years or more of college rose from 8 percent to 25 percent of women aged over 25. College-educated women normally delay childbearing at least until after they have finished their degree and often until after they have spent several years working.
More research, indeed needs to be done, but simple behavioural change could lower infertility statistics. If public health authorities campaigned against promiscuity, drug use, and obesity as vigorously as they have attacked smoking, there is little doubt that fewer women would become infertile.
So why not a campaign for earlier marriage and earlier family building? That would do far more to help lower the rates of infertility than expensive and stressful treatment in IVF clinics.
Anthony J. Caruso is a board-certified reproductive endocrinologist in Chicago. He worked in IVF for 15 years before leaving the field in 2010 for reasons of conscience. He is currently establishing a fertility center and blogging at the St Anne Center for Reproductive Health (www.chicagoinfertility.com).