Sunday, February 7, 2010

Anita Allen on Infertility and Racial Justice

This abstract is posted in collaboration with the NYU Review of Law & Social Change symposium, "From Page to Practice: Broadening the Lens for Sexual & Reproductive Rights."

Anita Allen Where’s My Bump? Just Responses to Working Women’s Infertility Crisis

Anita L. Allen,  Penn Law School

       While stereotyped as hyper-fertile African American women are affected by the opposite characteristic: we are more likely studies say, than white counterparts between the ages of 25 and 44 to be and remain infertile.

    If you did not know this, do not be ashamed.  Most physicians don’t know it either.  A recent Centers for Disease Control report says 6.1 million U.S. women between the ages 15 and 44 had trouble conceiving; 2.1 million married couples experienced infertility, and 9.2 million women had made use of infertility services.

    In a  study of  US physicians’ perceptions of fertility, only 16% of the responding physicians correctly identified African Americans as the racial group most at risk for fertility, 82% thought white women were most at risk. While stereotyped as hyper-fertile  most studies say that African American women are more likely than white counterparts between the ages of 25 and 44 to be and remain infertile.

The Research

    Most fertility research involves wealthier white women, because they are the biggest consumers of fertility clinics whose patients or patients data are available for  research studies. The story of African American women’s fertility, emerging from the most recent empirical research available seems to be this.

* African Americans experience many infertility risks, including environmental risks such as exposure to industrial toxins; lifestyle risks such as heavy smoking, caffeine consumption, drug use and poor nutrition; and female obesity.
* African American women who seek care for fertility tend to have experienced difficulty conceiving for a longer period of time than white women. Many African American women report not trusting health professionals.
* The price of fertility treatments is high. In 2002 in US mean cost of one round of IVF was $9,547 and average per capita income was $33,360.
*  Utilization of ART services by AA women increased when access to care was improved
* Women connected with the military apparently utilize fertility services available to them at rates comparable to white women; but in Massachusetts which requires health insurance to cover  fertility treatments, African American women consume fertility services at lower rates than white women.
* African American women are 3 times more likely to have uterine tumors called leiomyomas that reduce fertility and the efficacy of fertility treatments.
* African American women experience more IVF implantation failures than white women; and more spontaneous miscarriages
* Not every study suggests that women ofcolor are more likely to be infertile than white women.  The Department of Health and Human Services, National Survey of Family Growth (NSFG) (ongoing research, described in 2007) concluded that the prevalence of infertility is similar across all racial groups, although the highest use of fertility services is by Caucasian women with incomes 300% above poverty

Responsibility for Causing and Infertility

    There is a legitimate question of whether infertility it is best understood as a medical problem or as a social problem. I want to suggest that unchosen infertility is a serious problem, framed in medical or social terms, for which the larger society, not merely individual women should take responsibility.  If society expects women to go to school and work outside the home—which recently it has -- then infertility caused in part by education or work related delays in childbearing merits a public response, not merely private ones.

    Racial justice calls for more research into the causes and solutions of unwanted infertility among the groups of women for whom it is disproportionately an issue.  It also calls for fertility services as a part of government entitlement programs.  The strength of national health plans such as those found in Taiwan, German or Israel is that treatable fertility problems are included among the medical services paid for by government.  The current financial crisis makes the call for further expensive health care options admittedly problematic.

     Infertility services are expensive, beyond the reach of many women of color. While some in the US have argued that the solution to making infertility affordable is to mandate that employers’ health insurance plans include coverage for infertility, this approach is inadequate.  Only women with jobs in companies with comprehensive health care schemes would benefit from this innovation.

    Moreover, as we have seen in Massachusetts, African American women’s utilization of fertility benefits lags behind white women’s even when there is employer coverage.  Yet in the military, where there is presumably greater espirit d’corps among the women studied than in typical communities, black and white women make similar choices about fertility care utilization. There is a large issue of whether culturally isolated Black women experience infertility as an intractable problem, the solutions to which are not individual medical treatment, but acceptance of non parenting, informal kinship adoption  or formal legal adoption.  And might those responses be commendable?

Work and Delay
    Increasingly, educated women around the world are facing the felt tragedy of wanting to get pregnant but not being able to—empty bellies, no bumps.  We are waiting too long. Nature designed women to reproduce in their late teens and twenties.

* According the U.S. Department of Health and Human Services, the ability to ovulate declines with age.

* A woman’s health and the health of her eggs deteriorate with age, too. 

* Older women are more likely to miscarry.

* Making things worse, sexually active women’s partners can have serious fertility problems. A man can have no sperm, too few sperm or misshapen sperm that swim poorly. 
    According to Family Planning International, about 10 percent of all couples worldwide are or have been infertile. Globally speaking, women in developed countries are having fewer babies, later in life. First babies tend to be born after the 25th birthday.  The decreased birthrate in Taiwan, along with an increase in infertility is often attributed to marriage delays. The total fertility rate in Taiwan was 1.3 children per woman in 2007, compared to more than 6 children per woman in 1957.
    So why do women delay pregnancy until middle age? 

    Economic necessity and a desire for professional advancement.  Married or unmarried, gay or straight, most U.S. women feel they must work outside the home.  Sixty-three percent of African American women, 58.2 % of white and Native American women, and 57.5 % of Asian American and Hispanic American women are in the labor force. Moreover, many women want to work outside the home. They have useful talent and skills.  Women who do work less than men, and may feel they have to work even harder.

    Women with economic and career aspirations are working inflexible hours and putting off childbearing until they are in their late 30s and early 40s. The average U.S. woman earns at least 25% less than the average U.S. man.  But higher education can narrow the wage gap. A similar situation exists in other developed countries. Eager to exploit their abilities, ambitious women go to college and then pursue graduate and professional degrees. Where allowed by law and custom, they compete alongside men for jobs, promotions, tenure and partnerships. Then, suddenly, menopause loom. 

    Thanks to availability of infertility treatments the birth rate for women over 30 has risen a bit in recent years. In fact the mean age for childbirth in the UK was 29.3 years in 2007, up from 28.6 years in 2001. IVF is free for Israelis for the first two children, and there are ten times more IVF procedures performed there than in the U.S. The median age of woman seeking fertility treatments is about 34 in Germany, where infertility services are  heavily regulated.

How is Fertility Treated

    Fertility physicians use medicines to balance hormones, regulate ovulation, and stimulate the production of viable eggs. Surgery can unblock fallopian tubes or undo the damage of endometriosis, miscarriages, ectopic pregnancies and pelvic inflammatory disease. Women have difficulty conceiving can have their eggs removed surgically and fertilized outside the womb via IVF--in vitro fertilization.  Doctors can implant preembryos freshly created by IVF directly into a woman’s womb or freeze them for later. Doctors can make babies for infertile women using the sperm of an anonymous donor and healthy eggs purchased from a younger woman. 

    As a last resort, women in places that allow it (like California) can solve the problem of infertility by hiring surrogate mothers to get pregnant for them. Infertile women using artificial reproductive technology, commercially donated gametes and surrogates don’t experience pregnancy or rearing their own genetic progeny at all. For many women, the ultimate goal of fertility care is the same as the goal of adoption--a fair chance to raise a child, not gene replication or personal pregnancy. 
      Fertility services are priced high.  They constitute billion dollar pharmaceutical and service industries.  Only the wealthy can afford to pay full price out of their own pockets. Since 1995, in Israel fertility services have been provided for both married and single women under the country’s universal health insurance law. Israel’s health ministry now limits access to some services to only women under 45. Still, there are more fertility clinics in Israel than any other nation in the world and plenty of fertility tourism.
    The U.S. lacks a comprehensive federal fertility care subsidy. About fifteen U.S. states mandate insurance coverage for ART, however.  In 1987, Massachusetts defined infertility as a medical problem and thereafter mandated that health insurance companies provide coverage for infertility treatments.  An infertile woman usually isn’t “sick,” “diseased” or “handicapped” in the classic sense.  Yet some American courts have determined that infertility is a “disability” under the Americans with Disability Act, because it impairs a “major life activity”.  U.S. courts have held, though, that self-insured employers whose health insurance plans cover pregnancy care, may deny coverage for infertility treatments, the cost of which can run into the triple digits. 
    The realm of reproductive technology is surprisingly laissez faire in the U.S.  Some constitutional lawyers argue that the right to bear and beget children enshrined by the Supreme Court in Fourteenth Amendment jurisprudence is a right to bear and beget by virtually any consensual means necessary.  But there have been calls for government regulation of reproductive technology, as there is regulation of abortion.
    Great Britain has enacted a special statute and created a special governing body to deal with policy and ethical questions raised by the growing popularity of artificial reproductive technologies.  The Human Fertilisation and Embryology Act 1990 created the HFEA, an agency charged to license and monitor IVF, donor insemination, human embryo research, and the storage of gametes and embryos.

Litigating the Chance for Pregnancy
      A number of US women have sued their companies in an effort to earn the right to have fertility treatments covered.  These suits have not been successful and here's why.  First, employers are not compelled to provide any health insurance for their employees, much less health insurance that covers fertility treatments. Second, employers who do provide health insurance for their employees are not deemed responsible for providing each and every health care benefit employees might wish.  Employers are permitted to set the terms of health insurance benefit plans.
      Let me tell you about one lawsuit brought in a federal court in New York.1  The plaintiff, Rochelle Saks, was a married woman in her 30’s who worked for a company that sold executive business products (Franklin Covey Co.). For the four years she worked for the company she and her husband tried to have a child.  They tried using natural means. Natural methods did not work. Under the care of physicians she tried hormone treatments, which did not work.  She graduated to artificial interuterine insemination and embryo transplant.  These did not work.

      Over the years she underwent numerous lab tests, surgeries and body scans in an effort to diagnose and treat the cause of her infertility, and monitor the impact of medications on her body. She managed to get pregnant twice, but quickly miscarried.  Her employer refused to pay for most of the surgical procedures she underwent. Her insurance policy contained an explicit exclusion for “surgical impregnation” procedures. 

      Ms. Saks sued her employer, Franklin Covey Co. She lost.  The federal district court readily agreed that Saks suffered from the emotionally devastating “disability” of infertility, and that expensive treatments were “medically necessary”.  But the court found that her employer’s insurance plan lawfully excluded coverage for the treatments she needed.  The court also found that a federal statute (ERISA) exempted self-insured employers like Franklin Covey from federal disability laws demanding that employers accommodate disabled workers.

    Was there wrongful discrimination, though, in a moral sense, even if not in a legal sense?  According to Professor Deborah Hellman, discrimination is morally wrong when it demeans. 2 Discrimination demeans when two conditions are satisfied. First, the alleged discriminator must be in a position of power relative to the alleged victim of discrimination. That condition is satisfied on the facts of this case because the employer Franklin Covey had economic power over Ms. Saks.  Hellman’s second condition is not satisfied, however.  This is the requirement that the person in a position of power treats the other in a denigrating fashion as lacking in equal human worth.
      The problem of infertility is mounting in the U.S. as many more women past 35 –indeed past 45--come to view having a child of their own as an experience they wish to do after they have earned advanced degrees and established themselves in meaningful professional careers.  Does respect for women’s equality require employers who provide health insurance to employees to pay for fertility treatments so that infertile women workers can fulfill their dreams of motherhood like fertile workers can?
      We do not have national health insurance in the U.S. and employers heavily subsidize health care for their workers on a voluntary basis, simply to compete with other employers. Some employers purchase health insurance for their employees and some employers self-insure--pay from their own pockets.  Most employers’ health plans pay for pregnancy care and newborn delivery; but few pay for the full range of fertility services available, such as in vitro fertilization (fertilization of a woman’s egg with sperm outside her womb in a clinic or laboratory).  I know of no employers who pay for egg donation (eggs cost a minimum of about $5,000) or surrogate gestational services (about $15,000, minimum). 
      But is having a child so important that employers who pay for pregnancy expenses for fertile women, in the name of equality and fairness, should also pay for fertility treatments—hormones,  lab tests, surgeries, artificial insemination, and in vitro fertilization?  These can amount to tens of thousands dollars in the easy cases and more than $100,000 in the most severe cases.
    Maternity is a highly desired experience for women around the world. Infertility is sometimes defined as the inability to conceive and give birth to a baby after attempting to by natural means for at least one year.  As noted in some countries, infertile women can go to see a family physician or fertility specialist to obtain help in having children.  They may receive hormonal treatments, surgery, or in vitro fertilization. 
       In Israel or Germany these services would be paid for as routine medical benefits through government health insurance programs.  In the United States, however, there is no national health insurance program.  Workers are forced to purchase health insurance on the open market, or through their employers.  Most employers offer group health insurance at affordable rates to workers.  Even some small companies and not-for-profit organizations can afford to purchase health insurance programs for their employees.

   What happens, however, when a woman works for a company that declines to pay for some or all fertility services?  What happens, for example when a woman discovers that although her company's insurance plan will pay for doctor's visits and hospitalizations associated with having babies, it will not pay for treatments or hospital stays related to addressing the problem of infertility? 
   At the present time, most employers who provide health insurance plans for their employees do not provide coverage for infertility treatments.  The reason for this is not hard to discern.  It is very expensive.  Many Americans who are wealthy spend hundreds of thousands of dollars in an attempt to conceive a child, making use of expensive drugs, surgery, in vitro fertilization, pre-embryo transplant, embryo cyropreservation and even the hiring of surrogate mothers and the purchase of the eggs and sperm of third parties.

    The equality question raised is this.  Should women who are infertile and women who are fertile have equal access to the means of successfully becoming parents?  One argument is that it treats infertile female employees wrongfully different from fertile female employees when employers pay for maternity costs and obstetrics care but not for fertility treatments and related procedures.

    It is not a lack of regard for the human worth of infertile female employees that motivated  the denial of infertility coverage.  An employer may have great respect and empathy for infertile female workers and yet be unable to afford the treatments they require to be mothers; or may be able to afford infertility coverage, but only they cut the size of their workforces or decline similarly expensive life-saving medical care, such as cancer treatments and transplants.  It is harsh to say, but where money is tight, it should go first to cancer victims who need life-saving treatments and then to infertile women.
Saving life takes priority over creating life.

    For these reasons, I do not think denying infertile women insurance coverage for infertility is a wrongful kind of discrimination. Now, arbitrarily granting fertility care to some favored female employees—like the boss’s girlfriend or the female executives-- but not to all female employees could be wrongfully discriminatory.  But a business decision to deny coverage that may mean a woman cannot obtain fertility treatments is not wrongful discrimination.
      The real problem, the real “wrong” may be the lack of a national health insurance plan in the U.S. It is not up to individual employers to solve the problem of growing female infertility in the U.S.  If we want to support women who take the time to train for professional careers, we must, as a country be willing to help them become mothers.  Not at all cost, but at a reasonable cost.  I believe the federal government should play a bigger role in securing health care for all Americans, health care that includes a reasonable amount of infertility care, such as one finds in Israel, Germany, Italy and other wealthy nations. 
Not a Panacea
    No matter who pays, infertility treatments are not a panacea. Fertility care is expensive and sometimes not paid for by government or private insurance. It usually doesn’t’ work for older women.  The success rates of ART have improved over the years. However, the most recent report of the U.S. Centers for Disease Control indicated that the success rate for women over 35 attempting to get pregnant using her own fresh eggs was barely 29% and for women over 41, only 10.7%.  
    There are other concerns raised by infertility treatments besides the cost and low success rate. The availability of affordable treatments can cause conflict within families. I met a middle-aged lawyer in Taipei who said she went through fifteen years of state- subsidized emotionally and physically painful fertility treatments because her in-laws insisted. “I almost wish there weren’t any such thing as fertility treatments,” she said.  African American women are twice as likely as white women to be infertile and half as likely to resort to in vitro fertilization. It may be that adoption is a more satisfying and affordable option for ethnic groups that deemphasize blood ties as a basis for kinship.    

      The use of reproductive technology has led to bioethical concerns about the  handling of the earliest beginnings of human life.  Ethical concerns surround exposing otherwise healthy women to the uncertain health risks of repeated rounds of fertility drugs and high-risk pregnancies with twins and triplets. 

    And then there are the underpublicized family law nightmares.  In one U.S. case, a married couple who hired a surrogate mother to carry a child for them using donated egg and sperm changed their mind after the child was conceived.  The divorcing couple didn’t want the child, the surrogate and her husband didn’t want the child, and the sperm and egg donors and their spouses didn’t want the child.  A federal appeals court had to force the divorcing couple to accept responsibility.

     In the U.S., it is now well established that every man and woman has a constitutionally protected right to procreate.3 And perhaps a right to utilize fertility services.4  But in the US there is no right to government payments.  And, it appears, there is no right to have employer health plans cover infertility treatments. 

Conclusion, for now

    I don’t want my 13 year old to turn up pregnant anytime soon. But after a Ph.D., a law degree, and a year on Wall Street to pay off student loans, she could wind up facing untreatable infertility.     I have begun telling the young professional women who seek my advice not to follow my example, not too exactly.

1 Saks v. Franklin Covey, 117 F. Supp. 2d 318 (SDNY 2000).
2 “Deborah Hellman argues that popular ideas about when discrimination is wrong—when it is motivated by prejudice, grounded in stereotypes, or simply departs from merit-based decision-making, for example—are less persuasive then her account.
3 Skinner v. Oklahoma and Eisenstadt v. Baird establish such a right..
4 Prof. John Robinson (University of Texas Law School) has defended the idea of a constitutional right to use fertility treatments and surrogate mothers.

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