Chapter 11: Assisted Reproductive Technologies
In 2000, Kijuana Chambers, a blind woman from Colorado, filed a lawsuit after being denied access to assisted reproductive technologies.endnote According to the fertility clinic, Kijuana posed a “direct threat” to the safety of her yet-to-be-conceived baby.endnote Just as Kijuana was about to undergo an insemination treatment, the clinic demanded that she get an occupational therapy assessment of her home to make sure it was safe for a baby.endnote After looking into it, Kijuana informed the doctors that she could not obtain such an evaluation.endnote The doctors refused to inseminate and refused all further services until she provided evaluations.endnote After a lengthy battle, the 10th Circuit Court of Appeals denied the appeal in an unpublished decision.endnote According to an attorney for the clinic, the doctors were worried that Kijuana could not care for a baby and turned her down because “it was the right thing to do.”endnote “This case is about the moral and ethical responsibility of a physician,” the attorney said.endnote Kijuana eventually located another clinic that provided her with fertility treatment, and she now has a daughter.endnote Kijuana’s experience is common. Many prospective parents with disabilities encounter significant, and sometimes insurmountable, barriers to receiving assisted reproductive technologies (ART). Access to ART is often impeded by discriminatory practices against people with disabilities, as well as the growing costs of treatment combined with limited coverage by health insurance. The fact that ART remains largely unavailable to many prospective parents with disabilities is significant because for many it provides the only opportunity to procreate. In fact, as this chapter explains, ART providers may have an affirmative duty to provide treatment, pursuant to the ADA, in some circumstances.
Assisted Reproductive Technologies: A Brief Overview
ART—a mainly unregulated multibillion-dollar industry—is the only type of medical treatment in which the “end goal is the creation of another person.”endnote ART includes a wide range of medical technologies designed to treat infertility or otherwise assist in impregnating a woman who is unable to become impregnated through sexual intercourse. Basic ART includes diet alterations, lifestyle changes, and drug or hormone therapy. Approximately 85 percent of infertility cases are resolved through these measures. endnote
More sophisticated and invasive interventions include intrauterine insemination (IUI) and in vitro fertilization (IVF). IUI is a relatively simple nonsurgical procedure in which prepared sperm from a partner or donor is brought closer to the ova through insertion into the woman’s uterus during her ovulatory phase.endnote IVF is a more complicated process in which the ova are removed from the woman’s body by laparoscopy, fertilized with semen from her partner or donor, incubated in a laboratory dish until an embryo develops, and then transferred to the woman’s uterus.endnote Some couples may also require gamete intrafallopian transfer or zygote intrafallopian transfer. All but the most basic ART requires treatment by a physician, typically a reproductive endocrinologist or urologist.endnote
IUI and IVF can also be used to impregnate a surrogate. A surrogate is a third party who gestates the baby to full term with the understanding that she will give the baby to the intended parents. In gestational surrogacy, the woman is inseminated with the intended couple’s fertilized egg (using either the couple’s gametes or donor gametes); thus, the surrogate is not genetically related to the baby. In partial surrogacy, the woman is inseminated with the intended father’s sperm (or donor sperm) for the purpose of fertilizing one of the surrogate’s own eggs; in this case, the surrogate is genetically related to the baby.
According to estimates, nearly one in six American couples will experience infertility at some point, and nearly 14 percent of married couples who are not surgically sterile are infertile during any given year.endnote More precisely, 9 out of every 100 women worldwide between the ages of 20 and 44 cannot conceive a child.endnote As Dave Shade notes, “Because disability has only a neutral or negative impact on fertility, people with disabilities who wish to have children are equally or more likely than the nondisabled population to experience infertility. Thus, it would be expected that at least fourteen percent of heterosexual couples trying to conceive, in which at least one partner has a disability, are infertile during any given year, and at least one sixth of such couples will experience infertility sometime during their relationship.” endnote It is estimated that approximately 7.3 million couples in America currently experiencing infertility.endnote One study estimates that this number will increase to approximately 7.7 million by 2025.endnote
Disability and Reproduction: Historical Context
As discussed in Chapter 1, the health care profession has a horrid history of curtailing the reproductive rights of people with disabilities. Jaime Anno, a master’s in public health candidate, wrote, “While scientific eugenics no longer occurs under that name, the determination and the practice of controlling the reproduction of some groups and supporting the reproduction of other groups persists in the United States.”endnote In an article in the Berkeley Journal of Gender, Law, and Justice, Judith Daar wrote, “While the eugenicists of a century ago coerced the ‘feeble minded’ into surrendering their reproductive capacity through forced sterilizations, today’s practices act to deprive the disempowered of their capacity to reproduce by withholding the means necessary to produce a child.”endnote
The same beliefs about people with disabilities that once led health care providers to sterilize thousands of women with disabilities now lead them to provide or deny reproductive care on the basis of stereotypes concerning people with disabilities and their sexuality. According to Carrie Killoran, a mother with a disability, “Whether a woman is born with a disability or acquires it later in life, the message she gets from the medical system and society is that she is ineligible for normal societal female roles of lover, wife, or mother.”endnote
The misconceptions held by many health care professionals result in diminished access to reproductive health care for women with disabilities. As discussed in the NCD report The Current State of Health Care for People with Disabilities, women with disabilities require health services related to sexuality, reproductive care, and childbearing, just as women without disabilities do. endnote However, social misperceptions and stereotypes about disability can make it difficult for women with disabilities to obtain information, medical care, and services to ensure that their reproductive needs are met.endnote Such needs include routine gynecological and breast examinations; screening for sexually transmitted diseases (STDs); contraception; consultations about sexuality and sexual function; fertility consultation and support; obstetrical care during pregnancy, labor, and delivery; and information about healthy parenting and issues related to menopause, including osteoporosis, loss of libido, and insomnia.endnote
Structural barriers to receiving adequate and informed reproductive care include limited professional training and competency of primary care and reproductive care specialists; inadequate or no health insurance coverage for visits to specialists; poor physical access to usable and adapted or specialized examination and diagnostic equipment; and negative or discriminatory provider attitudes.endnote
ART providers are not immune to the eugenics philosophy that continues to pervade the health care system. Carl H. Coleman says, “Our society has a long history of efforts to prevent people with disabilities from having children, a history in which the medical profession played an especially prominent role. While we no longer embrace the coercive eugenics policies of the early twentieth century, the perception that some individuals with disabilities are inherently incapable of being parents remains common in our society. Hence, there is a real danger that disability-related denials of ART will be based on ignorance or bias against people with disabilities, even more so than when physicians deny individuals with disabilities other types of medical care.”endnote
Disability Law and Assisted Reproductive Technologies
ART providers must comply with the ADA as well as the Rehabilitation Act if they receive any federal monies, such as Medicaid or Medicare. Generally, ART providers offer services in hospitals or freestanding medical offices. If the provider treats patients in a public entity, such as a state-run hospital, Title II of the ADA applies; otherwise,
Title III of the ADA applies, because it includes “professional office of a health care provider, hospital, or other service establishment.” endnote
Title III prohibits any public accommodation from discriminating against people with disabilities by denying access to goods and services. Under Title III, ART providers may not (1) establish eligibility criteria that screen out people with disabilities from equally benefiting from a good or service; (2) fail to make reasonable modifications in policies, practices, or procedures when such modifications are necessary to ensure that people with disabilities have access to the goods or services; (3) fail to take such steps as may be necessary to ensure that no person with a disability is excluded, denied services, or treated differently because of the absence of auxiliary aids and services; (4) fail to remove architectural barriers; or (5) fail to make a good or service available through alternative methods if such methods are readily achievable.endnote
Access to Assisted Reproductive Technologies
In 1942, at the height of World War II, Supreme Court Justice William O. Douglas said, “Procreation…involves one of the basic civil rights of man ... fundamental to the very existence and survival of the race.”endnote Although ART can enable many people with disabilities to procreate when they would otherwise be unable to do so, access is often impeded for prospective parents with disabilities because of significant, and sometimes insurmountable, barriers to receiving the vital treatment. Kimberly Mutcherson, professor of law at Rutgers University, said, “To be a reproductive endocrinologist is to wield tremendous power over procreation.”endnote Prejudice and social tolerance of inappropriate and unlawful presumptions about disability often result in people with disabilities being denied access to ART, which in many cases violates Title II and III of the ADA. As the use of such treatments expands, providers must not lose sight of their legal and ethical obligations to treat people with disabilities. Moreover, the growing costs of ART, combined with the dearth of coverage for such treatment by health insurance, often prevents people with disabilities from using ART as a means to parenthood.
Discrimination and Bias
In recent years, ART has increasingly become the subject of impassioned widespread debate. Most of the public attention has been on the status of the children resulting from these treatments rather than the process by which patients are accepted for treatment, which has allowed widespread opportunity for discrimination.
Physicians in private practice may decline to provide services to a person for a variety of reasons, such as excessive patient load, the person’s inability to pay, or simply because they do not like the person.endnote For ART providers, it is also “legally and ethically permissible for a physician to refuse care to a patient when a medical assessment reveals that the patient cannot be helped with existing technology or that an ensuing pregnancy would seriously compromise the patient’s own health.”endnote However, refusal to provide care on the basis of factors such as race, ethnicity, or disability violates both professional ethics and the law.endnote
Research demonstrates that ART providers regularly engage in discriminatory practices, particularly in screening potential patients. The Office of Technology Assessment of Congress surveyed 1,213 artificial insemination providers and found considerable potential for discrimination during the patient acceptance process.endnote The survey revealed that one in five patients seeking artificial insemination is rejected.endnote According to the survey, the most common rejection criteria were nonmedical: patient unmarried (52 percent of rejections), “psychologically immature” (22 percent), homosexual (15 percent), or “welfare dependent” (15 percent).endnote When asked, “Have you ever rejected or would you be likely to reject a request for artificial insemination from a potential recipient because she was/has…” respondents demonstrated an alarming willingness to make social judgments.endnote “Sixty-one percent had rejected, or would be likely to reject, an unmarried woman without a partner; 85 percent would reject a psychologically immature woman; 79 percent would reject a woman with a history of a serious genetic disorder; 95 percent would reject a woman with HIV infection; 32 percent would reject a woman with less than average intelligence; and 9 percent of infertility specialist physicians reported that they would reject a woman because she had less than a high school degree.” endnote Moreover, the report revealed that more than half of the providers surveyed (52 percent) performed a “personality assessment” on their potential patients, 44 percent screened for genetic diseases, and 74 percent screened for “selected diseases.”endnote In at least some instances, the purpose of these screening mechanisms was “to detect diagnosable mental illness or to address more general considerations of fitness for pregnancy and motherhood.”endnote While this study addressed only artificial insemination, the surveyed physicians represent the same group of physicians that provides other ART, so the results are applicable.
Mutcherson cites another study on the screening practices of ART providers that demonstrates that “most fertility providers believe that their work obligates them to consider both the welfare of the fertility patient or patients and the welfare of a future child prior to agreeing to help a patient achieve pregnancy.”endnote When asked questions about refusing hypothetical patients, providers demonstrated certain values and biases. According to this study, 59 percent of responding program directors said they would be very or extremely likely to refuse service to an HIV-positive woman, while 55 percent had the same response regarding a diabetic woman who had a 10 percent chance of dying as a result of her pregnancy. Sixty percent of the clinics would be not at all likely or slightly likely to turn away couples in which the woman has a history of attempted suicide, and 68 percent answered similarly regarding a couple in which both members have limited intellectual ability. Finally, only 66 percent would work with a woman with bipolar disorder, whereas 91 percent would work with a couple in which both members had become blind from a car accident.endnote
These studies demonstrate that ART providers regularly engage in discriminatory practices. Mutcherson says, “Given that those living with disabilities have frequently been singled out for ill treatment in the realm of procreation and parenting (including a long history of sterilization abuse), viewing fertility care through the lens of discrimination against the disabled provides a strong vantage point from which to evaluate what duties fertility providers owe to patients, and what duties society owes to those who face unjustified discrimination in their quest to become parents.”endnote
The Direct Threat Defense and the Future Child’s Interests
Although ART providers must comply with the ADA and may not discriminate on the basis of disability, Mutcherson, in her article “Disabling Dreams of Parenthood: The Fertility Industry, Anti-discrimination, and Parents with Disabilities,” examines whether ART providers may attempt to seek safe harbor under the direct threat defense of the ADA. The direct threat provision allows a physician to lawfully refuse care to a patient if the patient poses a direct threat to others.endnote
A direct threat is defined as “significant risk to the health or safety of others that cannot be eliminated by a modification of policies, practices, or procedures, or by the provision of auxiliary aids or services”endnote Pursuant to the ADA and its corresponding regulations, the determination that a person poses a direct threat must be based on an individualized assessment, based on reasonable judgment that relies on current medical knowledge or on the best available objective evidence, to ascertain the nature, duration, and severity of the risk; the probability that the potential injury will actually occur; and whether reasonable modifications of policies, practices, or procedures will mitigate the risk.endnote Mutcherson says, “Direct threat evaluations must be made to minimize the denial of services based on irrational fear and stereotypes, yet to allow care to be refused when objective evidence warrants that refusal.”endnote
Generally, in this context, threat-to-self claims should fail.endnote For example, in the case of a woman who is HIV-positive, pregnancy presents unique challenges and has been found, in some circumstances, to compromise a woman’s health.endnote However, other sources have found that pregnancy can actually improve the health of an HIV-positive woman.endnote Moreover, Mutcherson says, “It is irrefutably the case that thousands of HIV-positive women have given birth—most of them to healthy children—since the start of the epidemic, and it cannot be conclusively shown that pregnancy severely compromises the life span of an HIV-positive woman. Even if pregnancy was detrimental, arguably the decision whether to risk a shortened life span in the interest of having biological children is a choice to be made by the woman seeking pregnancy, and not by a physician. Thus, while a fertility specialist could choose not to assist an HIV- positive woman for fear that her pregnancy would pose undue risk to her own health, the claim of direct threat to the patient is specious at best and subterfuge to conceal illegal discrimination at worst.” endnote Similarly, in the case of a woman with quadriplegia, Mutcherson says, “The direct-threat-to-self claim also falters .... Such pregnancies entail risks, as do all pregnancies, but those risks can be well managed by obstetrical providers, thus negating a plausible claim of direct threat to self. The quadriplegic woman may require a more exacting level of monitoring than would a woman without such a disability, but the same is true for women who are diabetic, over the age of thirty-five, or have a history of miscarriages. Thus, the argument of direct threat to self is a poor one for fertility providers who are hoping to avoid caring for women with substantial physical disabilities.”endnote ART providers will almost always fail in raising threat-to-self claims.
ART providers typically deny access under the guise of threat to others, where the defense applies in two ways. Direct risks (gestational concerns) are those that would result in transmitting the parent’s disability to the child, or the risk of an adverse pregnancy outcome directly linked to the pregnant woman’s disability, such as complications leading to fetal death or to a child’s disability. Indirect risks (child-rearing concerns) are those that could affect the child as a result of how the parental disability affects the ability to parent.
ART providers regularly deny people with disabilities access to fertility treatment on the basis of gestational concerns. ART providers sometimes seek to employ the direct threat defense by asserting that the patient’s disability presents a risk to the child during gestation.endnote Often, this “threat” is that the child may inherit a parent’s disability. In such cases, ART providers must be cognizant of the intent of the ADA, which clearly disallows stereotyping as a permissible factor for consideration. Mutcherson says, “The ADA requires reconsideration of outmoded perceptions that disability is a horrible fate inflicted upon a ‘victim.’ If the potential harm is already borne by one or both parents (e.g., infertile deaf parents with a significant risk of having a deaf child), the court would be well-advised to place great weight on the wishes of the parents having experience with the disability in question. Moreover, permitting ART providers any significant degree of control in selecting the allowable (desirable?) characteristics in a child raises troubling eugenics concerns and may call for the restriction of the discretion of providers when considering genetic risks.” endnote
Generally, gestational concern is outside the expertise of the ART provider,endnote so the provider must seek a review from a qualified expert before escaping liability for a discriminatory denial of access to ART.endnote While the ADA may not require a medical opinion in all direct threat cases, it does require an objective individualized assessment that relies on current medical knowledge or on the best available objective evidence.endnote In most circumstances, an expert opinion would be necessary.
Undoubtedly, ART providers who deny fertility treatment to prospective parents with disabilities because of gestational concerns do so because of their own beliefs about disability. In fact, Elizabeth Pendo, professor of law at Saint Louis University School of Law, Center for Health Law Studies, says that studies have consistently demonstrated that the attitudes of physicians and other health care professionals toward people with disabilities are as negative as those of the general public, if not more negative. endnote As one study found, “Health professionals significantly underestimate the quality of life of people with disabilities compared with the actual assessments made by people with disabilities themselves. In fact, the gap between health professionals and people with disabilities in evaluating life with disability is consistent and stunning.”endnote For instance, Pendo notes, “In a survey study of attitudes of 153 emergency care providers, only 18 percent of physicians, nurses, and technicians imagined they would be glad to be alive with a severe spinal cord injury. In contrast, 92 percent of a comparison group of 128 persons with high-level spinal cord injuries said they were glad to be alive.”endnote
Jennifer,endnote a wheelchair user and mother of three children, was astonished when she experienced this attitude. During one of her pregnancies, genetic testing revealed that her child might have Down syndrome. Because of this, her physician encouraged her to terminate her pregnancy. Jennifer could not believe this; after all, she was a person with a disability, and she knew that having a disability was not the end of the world. Similarly, Susan,endnote who has an immune system disorder and is a mother of two children, was upset when her physician encouraged her to terminate a pregnancy after genetic testing revealed a marker for Down syndrome. Like Jennifer, Sarah was hurt and saddened that her doctor believed that a child who might have a disability should be aborted. In the end, neither Jennifer nor Sarah terminated her pregnancy, and neither child was born with a disability, although if they had been, both women told NCD that they would have loved the children just as much.
Related to gestational concerns—and reflecting many ART providers’ negative beliefs about disability—is pre-implantation genetic diagnosis, which involves screening embryos created through IVF for the presence or absence of certain genes, such as deselecting for a disability or selecting for a particular sex.endnote According to Adrienne Asch, Edward and Robin Milstein Professor of Bioethics at Yeshiva University and professor of epidemiology and population health and family and social medicine at Albert Einstein College of Medicine, “Using prenatal tests to prevent the births of babies with disabilities seems to be self-evidently good to many people. But for many people with disabilities, the message implicit in the practice of abortion based on genetic characteristics is, ‘It is better not to exist than to have a disability. Your birth was a mistake. Your family and the world would be better off without you alive.’”endnote “Disability activists say underlying (mis)assumptions about disability influence women’s decisions about whether to abort. They believe families need more accurate information about various disabilities and the lives of people with disabilities. Activists also point out that discrimination has a huge impact on the lives of people with disabilities, and that many of the limits on quality of life come not from medical burdens, but from barriers set up by society, from stigmatization to elevators that don’t work.”endnote
According to a Web site on gynecologic and obstetric issues confronting women with disabilities, “Because most disabilities result from trauma or the effects of age, it is unlikely that prenatal screening will reduce the gross social cost of disabilities. [Thus], [p]renatal screening that fails to incorporate the subjective experience of the disabled themselves costs society enormously when it eliminates the contributions of gifted, diverse individuals.” endnote Prenatal testing raises the question: Is it better not to exist or to have a disability? Most people living with disabilities would choose the latter; the same cannot be said for many ART providers.
Mutcherson says, “Women with disabilities have far too frequently faced discrimination in their quests to become parents. As reproductive technology creates expanded opportunities for these women, it would be a disservice to them—and the children…they would raise with love and care—to deny them the opportunity of biological parenthood routinely given to so many others.”endnote Eugenic agendas that prescribe who is “fit” and “unfit” to reproduce or be reproduced must be challenged.
As Kijuana’s story at the beginning of this chapter illustrates, ART providers deny treatment to prospective parents with disabilities on the basis of their perceived inability to care for children. Most people are “free to reproduce with a consenting partner without a prior assessment of their child-rearing ability or competency.”endnote However, many prospective parents with disabilities who seek ART have found that they are the unfortunate exception to the rule. As Carrie Killoran recounts:
“My infertility specialist never even considered the effects of my disability on childrearing. His interest seemed exclusively clinical. His nurse practitioner, however, with whom we had many appointments, seemed intent on repeatedly warning us of how hard it was to bring up a child, and how we did not know what we were getting into. This is a typical response for people who cannot imagine life with a disability. Everyone knows that having children is a lot of work, and to most people, choosing to add the difficulties of children to the challenges of disability is incomprehensible. However, we were at an infertility specialist! We clearly were not being whimsical or impulsive in our decision to have a child. I was the oldest in a family with lots of kids, and I had a good idea of what I was getting into.” endnote
As Mutcherson says, “Physicians who object to providing care based on amorphous concerns about the parenting skills of the patient and the best interests of the potential child stand on enormously shaky ethical and legal ground.” endnote Generally, ART providers do not have the training or expertise to raise or assess child-rearing abilities.endnote Shade says, “The fact that the medical community apparently considers such evaluations both appropriate and necessary evidences the extent to which such social judgments have previously been exercised by ART providers. However well-meaning such judgments may have been, they have undoubtedly been at times discriminatory in practice. Couples without infertility problems need satisfy no social criteria to implement a decision to have children. To use infertility treatment as a proxy for a parental fitness evaluation is both inappropriate and ineffective.”endnote
Some people believe that it is morally wrong to knowingly conceive a child when there is a risk of transmitting HIV to the child and that the reduced life expectancy of the infected parent will disadvantage the child.endnote However, researchers at the Royal Children’s Hospital/University of Melbourne argued that “denying HIV discordant couples access to assisted reproductive technologies is unjustified discrimination because couples who have children without reproductive assistance are not scrutinized in the same way.”endnote The researchers said, “Couples who conceive naturally do not have to justify their desire to have children,”endnote and “We have no reliable way of predicting who will or will not be a good parent and no agreed upon measure of what makes a good parent.”endnote
According to the American Society for Reproductive Medicine (ASRM), ART providers in the United States have traditionally not engaged in any “systemic screening of [a prospective patient’s] ability or competency in rearing children.”endnote However, ASRM also asserts, “Fertility programs may withhold services from prospective patients on the basis of well-substantiated judgments that those patients will be unable to provide or have others provide adequate child-rearing for offspring.”endnote The association also makes the following statement:
“With the growth of fertility programs and increased access for many people in the population, a wide variety of individuals now seek infertility treatment, including subcategories of patients for whom questions of child-rearing ability might legitimately arise. Many programs have had treatment requests from patients that raise such questions, for example, from persons who have a history of psychiatric illness, substance abuse, or ongoing physical or emotional abuse in relationships. Some patients or their partners may also have a history of perpetrating child or spousal abuse, or they present other factors that lead fertility programs to question whether they are likely to cause significant harm to a future child. In addition, persons with disabilities are increasingly seeking fertility services. While most disabilities do not impair child-rearing ability, there are some situations in which questions about child-rearing ability of persons with severe disabilities could reasonably arise.”endnote
Richard F. Storrow, professor of law at the City University of New York, says, “Although it is thought that most practitioners follow [ASRM’s ethical] guidelines, the guidelines themselves are in the nature of standards for self-regulation only. This lack of downward pressure on clinics from either the legal system or professional associations means that many clinics have no written policy on access to services.”endnote
Most ART providers believe that their work obligates them to consider both the welfare of the fertility patient or patients and the welfare of a future child before agreeing to help a woman get pregnant. In fact, one study cited by Mutcherson that screened 15 practices of ART programs found that although 59 percent of responding ART program directors believed that everyone has a right to have a child, 64 percent of these directors also believed “in their responsibility to consider a parent’s fitness before helping them conceive.”endnote Mutcherson said the fact “that only a minority (18 percent) of responding ART programs asked potential patients to meet with a social worker or psychologist during their patient screening process raises serious questions about how these programs accurately and adequately evaluate parental fitness without the aid of trained and skilled providers. This small number of evaluations conducted by social workers and psychologists starkly contrasts with the 80 percent of programs in which potential patients meet with a financial coordinator.”endnote
Undoubtedly, as Mutcherson asserts, “Defining the contours of good parenting is a gargantuan task that is rivaled, if not surpassed, by the challenge of determining if any one individual actually possesses good parenting skills. This assessment is even harder when the individual in question has not yet had a chance to put those skills into practice. When a person stands on the verge of procreation, as does one who seeks fertility treatment, any assessment of future parenting skill risks being reductive and simplified, and may limit the number of individuals allowed to reproduce with medical assistance—without necessarily sparing any future child from harm.”endnote
Financial Barriers endnote
Staceyendnote and her husband have been trying to conceive a child for more than a year. Both have physical disabilities. In preparation for conception, Stacey’s gynecologist conducted blood tests and an ultrasound, which revealed that her hormone levels and reproductive organs were “great for conceiving” and her uterus could carry a baby. Despite a year of trying, which has included ovulation kits and several other over-the-counter conception instruments, prenatal vitamins, exercise, and diet changes, Stacey and her husband have not conceived. Feeling “in the dark” about why they are unable to conceive, they would like to receive fertility treatment. Unfortunately, their health insurance (Medicaid and Medicare) does not pay for fertility treatment. Because of their limited incomes, they cannot afford the cost of treatment. Thus, because of significant financial barriers, Stacey and her husband may never be able to have a child and may never know why they could not conceive.
The cost of ART treatments significantly impedes many people with disabilities from accessing these technologies. (ASRM lists the average price of an IVF cycle in the U.S. as $12,400; the association does not say whether this includes medications.)endnote Resolve: The National Infertility Association reports that the average cost of an IUI cycle is $865 and the average price of an IVF cycle using fresh embryos (not including medication) is $8,158. endnote On average, medications for IVF are $3,000–$5,000 per fresh cycle.endnote People with disabilities typically have lower incomes, face higher health care costs, and seek health care services more often than people without disabilities.endnote Specifically, 30 percent of adults with disabilities aged 25 to retirement are living in poverty, which is twice the rate of their nondisabled counterparts.endnote In 2008, 26.1 percent of the poor population between the ages of 16 and 64 had a work disability. Of those with a severe work disability, 33.6 percent were poor, compared with 14.1 percent with a less severe work disability and 9.1 percent with no work disability.endnote Under these conditions, the financial burden of ART is a significant barrier. Medicaid and Medicare, the primary health insurers for people with disabilities, do not cover fertility treatment services.
Congress created Medicaid in 1965 “to enable each State, as far as practicable, to furnish medical assistance to individuals whose income and resources are insufficient to meet the costs of necessary medical services.”endnote State Medicaid agencies may not “arbitrarily deny or reduce the amount, duration, or scope of a required service . . . to an otherwise eligible recipient solely on the [basis of] diagnosis, type of illness, or condition.”endnote Medicaid is the nation’s largest group insurance program; it covers eight million people with disabilities.endnote Half of all women with disabilities are covered by Medicaid.endnote The lack of ART coverage under Medicaid and Medicare means that even if ART is accessible in theory, it is inaccessible to many people with disabilities in practice, because they cannot afford to pay for the services.
Medicaid’s failure to provide coverage for ART is inconsistent with its willingness to provide coverage for the male erectile dysfunction medication Viagra. Although federal law allows states to refuse coverage for fertility drugs, in July 1998, HHS sent a letter to the nation’s governors ordering them to pay for the costs of Viagra under state Medicaid programs.endnote The head of the Health Care Finance Administration reasoned that “Viagra had been approved by the FDA for the treatment of impotence and that impotence drugs were not allowed to be excluded from coverage pursuant to the statute because they were ‘medically necessary.’”endnote State governors expressed concern that the mandate forced them to cover Viagra for men while covering virtually no birth control or fertility drugs for women.endnote
Although opponents may argue that Viagra treats general erectile dysfunction, the reality is that Viagra assists reproduction in cases in which a man cannot otherwise achieve an erection to release sperm. Medicaid’s mandate to cover a male fertility drug but not female fertility drugs discriminates against women with disabilities. The key role of Medicaid in providing health care services to women with disabilities necessitates that Medicaid and Medicare cover ART.endnote
Coverage of fertility treatment by private health insurance is minimal. According to a 2006 survey of 931 employers conducted for Resolve, approximately 20 percent of employers cover ART.endnote Fifteen states have passed laws requiring that insurance companies provide coverage for some level of infertility treatment—either that treatment be provided as a basic health plan benefit (mandate to cover) or that insurance companies at least offer infertility coverage to purchasers (mandate to offer).endnote The 12 states that require insurance companies to cover infertility treatment are Arkansas, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, and West Virginia.endnote California, Louisiana, and Texas mandate that insurance companies offer infertility coverage to policyholders.endnote New Jersey should be applauded for its progressive approach to ensuring reproductive rights by including under its covered services IVF in which the embryo is transferred to a gestational carrier or surrogate.endnote
Although these state efforts are commendable, their impact is limited. First, coverage for treatment varies greatly, ranging from the initial consultation and diagnosis to IVF.endnote Even a plan that covers IVF may cap the numbers of cycles or the dollar amount it will pay.endnote Second, some insurance plans restrict coverage to certain individuals or relationships. For example, Maryland law requires coverage of in vitro fertilization but only if the “spouse’s sperm” is used.endnote Finally, the federal Employee Retirement Income Security Act exempts self-insuring businesses (the majority of employers) from state insurance regulation. endnote Therefore, even in the 12 states listed above, fertility coverage may be scarce.
Coverage for ART is often opposed on cost grounds. However, IVF and other reproductive technologies account for only 0.03 percent of U.S. health care costs.endnote Some studies show that the addition of ART treatment to a group health plan has a marginal effect on premiums.endnote In fact, such insurance coverage might even be more cost-effective, because insurance premiums that indirectly provide coverage for “hidden” infertility benefits (e.g., surgery to remove scarring in a woman’s fallopian tubes or varicose veins removal for men) may be adequate to cover more effective and often less expensive treatments such as ovulation induction, IUI, and IVF.endnote
These projections are not merely theoretical. The cost of infertility services as a percentage of total health premiums went down after the 1987 Massachusetts mandate.endnote Another study found the additional cost to be an estimated $1.71 per month.endnote In addition, Mercer’s 2006 National Survey of Employer-Sponsored Health Plans found that 91 percent of employers reported no measurable increase in their health plan cost after including infertility coverage.endnote Responses did not vary significantly between employers that did and did not cover IVF.endnote
Ensuring Access to Assisted Reproductive Technologies
In “Accessing Reproductive Technologies: Invisible Barriers, Inedible Harms,” Judith F. Daar writes, “Only by insisting on access for all can we realize Justice Douglas’ view of procreation as a basic human right.”endnote She concludes that “stigmatizing would-be parents by depriving them the opportunity to reproduce is dangerously reminiscent of our eugenics past, an era in which misguided judgments about parental fitness culminated in the involuntary sterilization of thousands of Americans.”endnote
Significant attention must go to ensuring access to ART for prospective parents with disabilities. Specifically, DOJ should issue guidance to ART providers, reinforcing their legal obligations pursuant to the ADA and addressing their duty to provide access and reasonable accommodations throughout all phases of the process and reminding them that presumptions of parental ability based on disability violate the ADA. DOJ must also investigate all reported allegations of ART providers violating the ADA and enforce the law as appropriate. HHS—collectively, the Office on Disability, CDC, NIH, and Office of the Surgeon General—should issue guidance to ART providers on treating patients with disabilities and their legal obligations to provide access and reasonable accommodations. ART professional organizations, such as the SART and the ASRM, must issue guidance to ART providers on treating patients with disabilities and their legal obligations to provide access and reasonable accommodations. Finally, CMS must identify and implement mechanisms to pay for ART for Medicaid and Medicare beneficiaries with disabilities.
Assisted Reproductive Technologies as an Accommodation
ART enables certain people to procreate in cases in which reproduction would otherwise be difficult or impossible. Providing these technologies to people with disabilities is a method for breaking down a socially created barrier to procreation. Interestingly, ART may be more desirable than adoption to some prospective parents with disabilities, because the process of adoption is riddled with stigmatization, demeaning investigations, and reluctance.endnote In fact, women with disabilities may be more interested in ART than are their nondisabled counterparts.endnote This section examines the affirmative duty of ART providers to treat prospective parents with disabilities, in some situations, under the auspices of ADA-mandated reasonable accommodations. It explores the obligations of countries that have ratified the Convention on the Rights of Persons with Disabilities and the application of its “effective and appropriate measures” provision to ART.
ADA Duty to Provide Reasonable Accommodationsendnote
Accessibility to good reproductive health care and services means more than ramps.endnote Provision of assisted reproductive technology is similar to other ADA-mandated accommodations in the context of reproductive rights. In his article “Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination,” Michael Stein, an internationally recognized disabilities rights expert, explains that ADA-mandated accommodations are consistent with other antidiscrimination measures in that each accommodation remedies the exclusion of a class of people from an opportunity by questioning the inherency of established norms. He argues that disability-related accommodations must operate as antidiscrimination provisions to alter social attitudes toward the disabled. Most important, society must recognize that these measures are not just accommodations, they are a right. Surrogacy is a method for eliminating socially created barriers to reproduction for persons with disabilities. Barrier-free access to surrogacy should be available as a matter of right, not a privilege or special accommodation.endnote
Many advocates have looked to the ADA to secure meaningful access to health care for people with disabilities. The purpose of Title III is to ensure that no person with a disability is denied goods or services offered to the public, including health care providers such as ART providers, because of a disability.endnote Pursuant to Title III, discrimination includes failure to make reasonable modifications in policies, practices, or procedures when such modifications are necessary to ensure that people with disabilities have access to the goods or services.endnote Health care providers must take affirmative steps to ensure accessibility for people with disabilities. For ART providers, this may include the use of ART as a reasonable accommodation.
United Nations Convention on the Rights of Persons with Disabilitiesendnote
Articles 23 and 25 of the CRPD have several positive implications for people with disabilities seeking ART.
Article 23, Respect for home and the family, obligates States Parties to take effective and appropriate measures to eliminate discrimination against people with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others.endnote Three rights must be advanced to eliminate discrimination: (1) the right of all people with disabilities who are of marriageable age to marry and to found a family; (2) the right of people with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education, and the means necessary to enable them to exercise these rights; and (3) the right of people with disabilities, including children, to retain their fertility on an equal basis with others.endnote Article 23 also provides that States Parties shall ensure the rights and responsibilities of people with disabilities with regard to guardianship, wardship, trusteeship, adoption of children, and similar institutions, where these concepts exist in national legislation.endnote Third, States Parties shall render appropriate assistance to people with disabilities in the performance of their child-rearing responsibilities.endnote The terms “effective and appropriate measures” and “means necessary” create a positive duty on the part of States Parties to provide accommodations to people with disabilities in the realm of reproductive choice.
Article 25 of the CRPD protects the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Specifically, States Parties shall provide people with disabilities with the same range, quality, and standard of free or affordable health care and programs as provided to other people, including in the area of sexual and reproductive health and population-based public health programs. This provision also requires health care professionals to provide care of the same quality to people with disabilities as to others, including raising awareness of the human rights, dignity, autonomy and needs of people with disabilities through training and the promulgation of ethical standards for public and private health care. This is particularly important in light of reports from people with disabilities of receiving lower standards of care and frequently encountering unawareness among practitioners, despite seeking medical attention more regularly than people without disabilities.
Article 25 also prohibits discrimination against people with disabilities in the provision of health insurance and prevents discriminatory denial of health care or health services on the basis of disability. The aim of this provision is similar to that of the ADA; it is particularly relevant where practitioners employ methods of discretionary access to reproductive health care (discussed earlier under Discrimination and Bias). endnote Without guidelines, health care providers are free to make arbitrary judgments about people with disabilities.
Examples of Assisted Reproductive Technologies as Accommodations
An Accommodation for People with HIV Infection
The disability most often used as a basis for denying access to ART is HIV infection.endnote In fact, until recently, most medical societies supported the denial of ART to people who are HIV-positive.endnote Over time, however, both the risk of perinatal transmission and the prognosis for HIV-positive people have changed dramatically.endnote These developments have led to reconsideration of policies discouraging the provision of ART to people who are HIV-positive.endnote
In February 2002, ASRM reexamined its policy on providing ART to HIV-positive patients. In a revised policy statement, ASRM noted the dramatic reduction in the rate of HIV transmission from infected women to their offspring, as well as the potential for “specific methods for sperm preparation and testing” to reduce the risk of transmission from infected men to uninfected women. As long as the provider has the clinical and laboratory facilities necessary to care for HIV-positive patients, the new policy states, “One can argue that health care providers are not acting unethically if they have taken all reasonable precautions to limit the risk of transmitting HIV to offspring or to an uninfected partner.” Citing the ADA, the report concludes that “unless health care workers can show that they lack the skill and facilities to treat HIV-positive patients safely or that the patient refused reasonable testing and treatment, they may be legally as well as ethically obligated to provide requested reproductive assistance.”endnote
ART helps HIV-positive people have a baby when they might otherwise not be able to without posing a significant risk of transmitting the disease to the baby. For example, when the male partner is positive and the woman is negative, a technique known as sperm washing can be used to diminish the risk of transmission.endnote After sperm washing, the sperm can be combined with the woman’s ova using IVF or intracytoplasmic sperm injection (direct injection of the sperm into a selected oocyte). endnote Alternatively, the couple can use donor gametes and ART to impregnate the female partner. This example illustrates how and why ART should be viewed as an appropriate accommodation for people with disabilities.
Surrogacy as an Accommodationendnote
In certain cases of disability, where a woman is unable to carry a baby to full term, surrogacy may be her only means of procreating. Moreover, a recent study implies that at a certain point, surrogacy is a better option than other infertility treatments financially, and physically for the woman, and that it increases the chance of having a healthy baby. Fertility and Sterility Journal recently published a study that found that cycle-based fertility treatments, such as IUI and IVF, may have a point of diminishing returns.endnote The study found that after two or three cycles of artificial insemination, the chances of a successful pregnancy may decrease.endnote These realities support the proposition that surrogacy should be included among the appropriate accommodations offered to people with disabilities who are pursuing reproduction.endnote Denying people with disabilities the opportunity to procreate using the assistance of a surrogate is an unnecessary limitation on the right to create a family.
Mutcherson states, “As the country debates the ethics of fertility treatment and worries about rogue fertility providers, it is critical to also raise voices in defense of those who face both natural and socially constructed barriers to parenting.”endnote ART providers possess enormous power and must not be permitted to exert control on the basis of bias and speculation. Similarly, financial barriers must be eradicated to allow more people with disabilities access to these technologies. ART has the power to transform lives through procreation; for some people with disabilities, it is their only option.