The Unfinished Mandate: Addressing the Issue of Infertility

The Unfinished Mandate: Addressing the Issue of Infertility

by Congresswoman Pat Schroeder

“They get about as much sympathy as an 83-pound woman who is trying to gain weight. We live in an ignorant world where people feel if you can drive a car you can have a baby… .” – Erma Bombeck Taken from the RESOLVE Newsletter January 1987.

As children, most of us grappled with the idea of babies and how they ever got here. As we grew up, we came to believe we understood this process and our own entitlement to have children. Many of us tried to carefully plan our futures and our families in hope of establishing some sort of economic security and emotional stability before embarking on the rocky road of childraising.

What a horrible blow when we’re ready for the challenge and the babies don’t come. Only then do we come to learn that not just children but even medical experts are confounded by much of the reproductive process. That having babies is not necessarily one of life’s givens and that pregnancy and birth are, in fact, quite miraculous.

“Fertility is not a life force that may be turned on at will. Although it is true that pregnancy may be prevented with almost 100 percent certainty, it is also true that, once birth-control measures are stopped, 15 percent of all couples will experience some degree of infertility. Pregnancy may be prevented; fertility, when it is desired, may be more elusive.” – Barbara Eck Menning, Infertility, A Guide for the Childless Couple.

Infertility has been a closet problem with a few bursts of sensationalized attention. It is a problem little considered by those not touched by it; a problem usually not shared by those who suffer through it. The exceptions to this are notorious – the screwy case of Baby M; the South African woman who became both a surrogate mother and grandmother at the birth of her daughter’s in vitro fertilized triplets; the awesome technological breakthroughs; and the papal injunction against the new reproductive technologies.

Congresswoman Pat Schroeder and friend at a reception
given by SANE. Photo Credit: Dianne Russell (SANE)

But for five million American couples, infertility is not front page news,it is a very personal nightmare. One out of every five to six couples has trouble conceiving a child.

The National Survey of Family Growth found a near tripling of the infertility rate of 20 to 29-year-old married women from 1965 to 1982. An analysis done by the Alan Guttmacher Institute found that 49 percent of couples in need of infertility care have received medical attention; 33 percent have received treatment; 16 percent have been given advice only. Fifty-one percent of those in need have obtained no professional care. Another source found that only 16 percent of infertile women wanting children are receiving treatment for their condition.

Although infertility is often portrayed as a YUPPIE malady, it is more an issue of YUPPIE access to treatment. Infertile couples are more likely to be Black, more likely to be older, and more likely to have received less than a high school education. Yet, a larger proportion of younger and white couples pursue treatment.

This is really only one more example of unequal access to quality health care. Although couples of lesser means have a higher incidence of infertility, it is the well-to do who more often pursue treatment and adoption. The costs of fertility treatments average around $3,000, the fees for adoption around $6,000. Although these costs – just as most health care costs – can be prohibitive when shouldered by individuals, they would add little to the nation’s health care bill when covered by insurance and spread over an employee population. Insurance coverage could open up these options to most working people.

“Unless you have experienced the emptiness, there is no describing the pain. Unless you have held a baby and despaired at having to give it back, you cannot possibly know what it is like.” – Erma Bombeck “Infertility is like a gloomy day. It casts a shadow over everything.”
– RESOLVE member

There is much talk of freedom of choice – it is perhaps the “mantra” of our age, and the frontline battle cry of women. But couples faced with the dark reality of infertility see their choices squashed. This is particularly startling to those who have been so deliberate about their careers, their families, and their health. Infertility is cruel evidence that hard work and effort are not always rewarded.

Yet, in the last few years, incredible strides have been made in the ability to diagnose and treat infertility. Microsurgical techniques and drug therapy have given hope to thousands of couples. The cause of infertility is identifiable in 95 percent of cases and 50-70 percent of these cases can be effectively treated. Similarly, large numbers of couples are turning to adoption as a wonderful way to build a family. Too often, though, these methods of family building are precluded by cost.

If we are to comprehensively address the issue of reproductive choice, we must expand the family planning agenda to include issues of fertility treatments and adoption. In addition to our ability to chose not to have children, we must be able to chose to have them as well.

Infertility has always been one of the broad range of services included by Congress in Title X of the Public Health Service Act to improve and expand the availability of family planning assistance. Since 1978, all health clinics that are grantees of Title X funds are required by federal law to offer infertility services to their patients. The clinics, however, are not equipped to provide anything more than introductory screening and referral. They are not able to do any specific medical treatments for infertility. According to the Office of Population Affairs of the Department of Health and Human Services, of the 4,000 plus clinics in the United States that serve over two million people, infertility services make up about one percent of the clinics’ activities.

With teen pregnancy such a crisis problem, family planning efforts must be focused on education and the availability of contraceptives. Yet, we must acknowledge the existence of the severe problem of infertility and expand the agenda to deal more effectively with it as well.

When not completely ignored, the issue of fertility treatment is an area of intense controversy.

“There has never been a harder time to be infertile. The 10 million Americans whose lives and hopes are touched by infertility are caught between two opposite and powerful social currents. The first is the traditional value system of religion, family and culture that says marriage and childbearing are expected as a duty of the adult person. The other is the new social trend of intelligent family planning. Zero Population Growth, abortion on demand, sterilization, and child free marriage, which is gaining in spirit and momentum. In the eyes of the first segment of society, the infertile couple is seen as objects of scorn or pity. In the eyes of the second, infertility may be seen as a ‘blessing’ or at worse as a minor inconvenience. People who work at achieving a pregnancy in a time of world overpopulation have even been called ‘immoral’ and made to justify their actions.” – Barbara Eck Menning

Modern couples are put down for wanting it all. Acronyms such as YUPPIE and DINK are cute, perhaps even sociologically of merit. But they also trivialize and disparage. Typically, couples who put off having children do so not to acquire BMWs or boatloads of cuisinarts, but rather to achieve some grounding in an ever-complicated world. More and more couples are postponing childbirth because of their financial situation, both partners having to work just to pay the rent and buy necessities. Our choices about when to have children are complex because the world is complex. The reality of children means childcare, clothing, education and braces. Also, couples are frequently faced with the choice between job security and parenting. Many wonder when is the right time to have children.

A particularly abhorrent theme is that of DINK: dual income, no kids. This is quite often not a chosen or desired state. The National Center for Health Statistics found that only two percent of women who wed want to be childless.

Compounding this is the position taken by the Catholic Church through a statement by the Congregation for the Doctrine of the Faith in 1987 in which all forms of artificial reproduction are condemned.

I do respect the right of individuals to refrain from utilizing reproductive technologies. I do not, however, think that any one group’s objections should mean that others should be precluded from using these techniques. Indeed, some religious groups argue that creation of new human life is of paramount importance, and any way this can be done is morally good. In a pluralistic society, we must all respect each other’s rights.

I find it hard to swallow the argument that assisting the infertile is “unnatural”. I submit that it is infertility that is unnatural, and that if science and technology can ease this unfortunate condition as it has other health crises, that we should support those efforts. In a speech at the University of Chicago Medical Center, Cardinal Joseph L Bernardin supported the Vatican’s opposition to most scientific and laboratory intervention in reproduction. Yet, he went on to say: I have heard the pain of loving couples. Catholic and non-Catholic, who desperately want the gift of a child. My heart reaches out to them. Theirs is a difficult burden and I share their pain. We must offer them love, support and understanding. And in the end, after prayerful and conscientious reflection on this teaching, they must make their own decision.”

A concern voiced by some centers is the fear of the “slippery slope” – the danger of new, out-of-control and frightening technologies and curious family relationships. They point to the most absurd examples of donor eggs and donor sperm and donor uteri. Proper monitoring should eliminate many of these fears. But even such monitoring has become bogged down in partisan bickering. The National Institute of Health is hamstrung in pursuing research. Congress has established a bio-medical ethical board on reproductive technologies, but ideological warfare has stymied the panel.

There are also those who subscribe to the theory of a hierarchy of life problems and that infertility just doesn’t rate. Much of the world perceives infertility as not very much of a problem. They don’t recognize the grief and pain of the individual, the stress on the couple, the 24-hour-a-day obsession. The infertile often are advised to be thankful that they don’t have cancer or that they have a great spouse. Such talk trivializes the problem. There should be no competition for who has the most horrifying condition or situation; this is irrelevant. People, for whatever reasons, want kids and the technology, the know-how, and the science are there to help many of them. Costs are often the barrier.

“It is true that infertility rarely proves fatal and usually does not render people incapable of performing their other functions in life. But infertility extracts a heavy toll on the quality of life and the emotional well-being of those affected. Infertility may be invisible in society, but its pain is real.” – Barbara Eck Menning

There is probably no more highly charged arena than that of family planning. It is a battleground of philosophies. The political left stresses the need for sex education and contraception. The right urges respect for sex in marriage and pushes for abstinence. But the goal of both factions is really quite similar: prevention of unwanted pregnancies.

There should be a tandem goal to family planning: assisting wanted pregnancies. This is a critical element to reproductive choice which has been too often ignored. The desire to have a family and the inability to do so is a widespread problem which must be recognized.

The self-described “pro-life” (here an especially curious misnomer) movement is against the new technologies because they believe the lost embryos are infanticide. In addition, they have vowed to end the use of federal family planning assistance money for abortion counseling and referral. Their efforts to channel family planning monies into adoption services have soured the left on the whole issue of adoption. Although the right does promote adoption as the solution to abortion, we do not have to accept that design. The left has neglected the issues of fertility treatments because they don’t want to lose the focus on contraceptives, sex education and abortion. We let the right wing taint the beauty of the rose, we should not similarly let them define the direction of the adoption/fertility treatment debate. When couples decide they want children, our policies should support it. Those who are honestly anxious to become parents should not be penalized because of the expense of procedures.

I have introduced legislation in Congress to require the insurance programs for federal workers to cover family building expenses including infertility treatments and adoption. I hope that by requiring federal employee insurance plans to cover family building activities, we will spur them to provide coverage for the general population as well. Already the states of Massachusetts, Hawaii, Texas and Maryland have laws requiring insurance coverage of infertility procedures.

There is the perverse notion that if we offer a benefit, people will exploit it. This has seemed particularly true with family issues. With the Family and Medical Leave Act, the threat is that couples will have children just so they can take time off from work. With the Family Building Act, some argue that women and men will submit themselves repeatedly to painful surgery or grueling adoption procedures just to take advantage of available benefits. But couples are simply not eager to consider difficult reproductive technologies or the intrusive adoption process for reasons other than the wish to reach their dream of having a family.

Acknowledging the problem of infertility and the difficulties for many of family building is fundamental to our national concern for the family. There is a tremendous number of people whose suffering can be eased. Accessibility to treatment and adoption are key.

Pat Schroeder, Democratic Congresswoman from Colorado, has served in the House of Representatives since 1972. She is a member of the Select Committee on Children, Youth and Family, the House Civil Service and Post Office Committee, and the House Arms Services Committee. She has always been an outspoken advocate on equality and women’s issues.