Insured Women’s Access to Infertility Care: How ‘Fair’ Is It Even With Family Healthcare Insurance?
Griffin, Martha
OBJECTIVE: to examine the process of accessing infertility care in the context of an ‘equitable opportunity to do so’ (Mithaug, 1996) by comparing two groups of insured women who had ‘family insurance coverage’.
DESIGN: A comparative survey design examined the perceptions of women who lived in States that mandated comprehensive infertility coverage and States that did not. A convenience, nonrandom sample of 242 women from 40 different States (102 women from states with mandated infertility coverage and 138 from states without coverage) who had accessed infertility care, through their health insurance, completed the Indicators of Access to Infertility Care Scale (Griffin, 1999). The two measures assessed were, perceptions of entry barriers to infertility care (Entry) and perceptions of having had a fair chance to pass through infertility treatment (Passage).
RESULTS: The women from states that did not have mandated comprehensive infertility insurance scored significantly higher in their perceptions of barriers to infertility care and scored significantly lower in their perceptions of having had a fair chance to pass through the infertility treatment system than did their counterparts in states with mandated infertility health insurance. CONCLUSIONS: Mandated comprehensive insurance coverage for infertility enables women to make family building decisions based on their own needs and appears to give them a sense of having had a fair chance to do so. It also seems to allow for the monitoring of expenditures for infertility treatment and thus imposes a minimal level of regulation.
KEY WORDS: Women’s Health; Access to Infertility Care; Mandated Insurance; Marginalized Health Care; Equity in Health Care.
Evidence suggests that almost everyone shares consensual, unconscious perceptual biases against women (Benokraites, 1997; Winston & Bane, 1993). Expounding on the term ‘marginalization’ as explored in nursing (Hall, Stevens & Meleis, 1994; Stevens, 1992), women with infertility can be described as having been marginalized to the maximum. As a group seeking health care access, they have existed outside the mainstream of society for decades. The status of women in society is said to be reflected in the nature and degree of reproductive health care that women can receive (Siebel & Bernstien, 1995). However, given the documented necessity for the following legislation : 1978, Pregnancy Anti-discrimination; The Women’s Health Equity Act, 1990 (Sharp, 1990) and all the individual state bills enacted to prevent ‘Drive-by 24 hour delivery’s’, suggests that support for family building relative to women’s reproduction is hard fought._
BACKGROUND AND SIGNIFICANCE
It is well known that women use health services more frequently than men but are more likely to encounter barriers (Clancy & Massion, 1992). Even women with identified “good health insurance” have experienced substandard comprehensive reproductive care (Women’s Research & Education Institute, 1994 p. 34). Additionally, 86% of all private health insurance plans specifically exclude comprehensive infertility coverage (Alan Guttmacher Institute, 1995) and only 79% of the plans cover mamography or pap smears (Women’s Research & Education Institute, 1994). This study explores the perceptions of this group of marginalized women who sought treatment for infertility.
The past two decades has seen the specialty of women’s health emerge. Holism is the central theme. Although there may be situations that address women’s health holistically, there still exists huge gaps and fragmentation (Raftos, Mannix & Jackson, 1997). It is therefore thought, that what must occur first, is to equitably address their reproductive needs. Bias, discrimination and bureaucracy should not be what dictates the status of women (Women’s Research & Education Institute, 1994). Women explicate all forms of infertility treatment, regardless of the individual partner of causation.
Progress in health care advances for those with infertility are three decades old. The birth of the first invitro fertilization baby was in 1978. Nationally, the first baby born of assisted methods, recently turned 20. These events heralded interest, specialization and thus scientific advancement in reproductive endocrinology and technology. However, none of these contemporary scientific advances spontaneously opened access to care for infertile women (Griffin & Panak, 1998; Van Steirteghem, 1998).
The private insurance industry, that insures 68-72% of the United States population (Altman, 1992), did not align advancements in infertility treatment methods with client access to the same degree of alignment that they did for the advancements in other conditions. Public policy decisions that impact women seeking infertility treatment should be based on science not on bias or prejudice (Guzick, 2002; Jenker, 1991).
Recently, in Christchurch, New Zealand, a change was made in their public health policy on treatment for infertility. It has opened access to thousands of infertile couples (“More Funds Pledge:. 2000). This change in public policy came after an audit of health care spending revealed that government expenditures for reproductive health services amounted to $10 million dollars on abortion and $2.2 million on infertility. This provocative finding resulted in a ‘public outcry’ that prompted change.
The human pursuit of procreation is a self-determined act that manifests itself in a successful outcome in the majority of instances and thus infrequently results in controversy. However, there exists unequal prospects for some in entering and succeeding in this self-determined pursuit (Brock & Daniels, 1994). Infertility is still treated with suspicion despite being recognized as a disease. The disease of infertility is still not provided with full insurance coverage nationally. The social advances for women have tended to trivialize reproduction in a effort to move women closer to an equal status with men (Gilbert, 1996).
Theoretical Framework for the Study of Access to Infertility Core
Equity theory and it’s adaptations from John Rawls (1971) and Robert Nozick, (1974) related to justice as fairness and justice as entitlement respectively, and their collective understanding of distributive justice as it relates to public policy, inspired the development of equal opportunity theory (Mithaug, 1996). Mithaug writes of the utilization of equal opportunity theory, and claims that every member of society deserves an optimal chance of securing their identified ‘good in life’, and that Equal Opportunity Theory explains the collective responsibility for ensuring fair prospects for all. These theories were used as the foundational frameworks in this study.
Literature Review
Women embarking on infertility treatment have an expectation of an equal chance at being treated for the disease of infertility. Further, it is important to understand the roots of inequity and identify the barriers to infertility access. According to the National Survey of Family Growth, from an epidemiological perspective the incidence of infertility has been constant for the past three decades (Mosher, 1980), maybe even longer (DeCherney, 1995). However, what have increased, relative to the disease of infertility, are the diagnostic and therapeutic capabilities. Recent advances range from the less invasive fiber-optic endoscopie procedures, to external fertilization, re-implantation and gamete manipulation. Substantive evidence exists to support that diagnostic and therapeutic treatments for infertility have kept pace with other contemporary health care treatments. Furthermore, the costs associated with the newer treatments are found to be equal to or less than costs for older treatment methods with no outcome measures. Yet, access to infertility care is not on par with access to care for other illnesses and unsubstantiated cost is often cited as the predominate reason (Ginsburg, 1996; Jain & Hornstein, 2002; Mastroianni, 1999; Sandelowski, 1994; Siebel & Bernstien, 1995; Van Balen & Gerritis, 2001; VanVooris et al., 1997).
The determination of actual cost for infertility diagnosis and treatments is difficult due to the multiple possibilities in testing and treatments as well as cross-over diagnosis where treatment is not wanted (Van Balen & Geritis, 2001; VanVooris, Stovall, Sparks & Stovall, 1997). The bypass of funded clinical trials and relevant research has to be factored into the individual human perspective. However, even when all these factors have been considered, the actual cost within the average family health care premium has never exceeded 8/10ths of 1% of the total premium. The range generally is .3% -.8% and in actual monies is $.80 to $3.00 per family per month (Griffin & Panack, 1998). This total cost is considered very low with respect to what the assessed amount of money that individuals would be willing to spend to insure themselves against the disease of infertility (Neumann & Johannesson, 1994).
Hann (1991) outlined his overall findings in a study that was commissioned by the Dutch Government to answer the question of whether the advanced reproductive technologies should be part of their overall social insurance package based on: medical outcome concerns; financial concerns and psychosocial concerns. The Dutch study was one of the first and to date the only comprehensive initiative that explicitly linked the decision about reimbursement based on these three concerns. Hann concluded that public debate about reimbursement should not hide behind economic concern because cost-effectiveness arguments have been proven invalid. Thus, he further states that objections to reimbursement for infertility treatments be addressed honestly in the public arena to expose invalid value judgments that affect health policy (Hann, 1991).
Approximately two-thirds of childbearing age women are covered by private health insurance plans. A survey conducted by the Alan Guttmacher Institute (1994) found that comprehensive infertility care was excluded in 86% of all private sector insurance plans. Consequently, the private health insurance structure itself becomes a conduit or a barrier in accessing health care in general, and specifically care for the treatment of infertility. Historically this fact has been evidenced in other sub-groups of patients: women; cancer patients; AIDS patients and those with mental illness (Starr, 1982; Cassidy, 1988; Mechanic, 1993; Andersen, 1995).
It has been shown that women experience impediments to comprehensive health care in many forms. This fact is especially true around issues of reproduction (Clancy & Massion, 1992). Comprehensive maternity care was not an insurable condition until the Federal Government enacted the Pregnancy Anti-discrimination Law (1978).
Impaired fertility impacts 5.3 million people. However, this disease and its treatments have not been given the credibility that other major diseases and diagnostic treatments have been given over the past three decades. The more recent techniques for treating infertility such as invitro fertilization (IVF), gamete intra-fallopian transfer (GIFT), zygote intra-fallopian transfer (ZIFT) and inter-cytoplasmic sperm injection (ICSI) are all non-experimental frequently indicated treatments for the disease of infertility. They have collectively resulted in thousands of live births to infertile couple’s nationwide and worldwide (Olivennes, Kerbrat, Rufat, Blanchet, Fanchin & Frydman, 1997; VanBladen& Gerritis, 2001). The overall success rate for these advanced procedures in terms of live delivery per initiated cycle has nearly tripled, from an estimated 5.4% in 1985 to 16.8% in 1993 (VanVoorhis et al., 1995; Ginsburg, 1996). Additionally, as with many other therapeutic treatments, assisted reproductive techniques become relatively cost effective once the success rate reaches 10% (Hann, 1991).
There exist, within any given year in the United States, approximately 55 million women of childbearing years (15 – 44). Further, 5.3 million of these women will experience infertility. However, only 2.3 million women will receive any treatment for their infertility. Reportedly, of the 2.3 million who do receive treatment, only 2% or 46,000 of these women have reported using any of the advanced assisted reproductive techniques (Preger, 1990; Wilcox & Mosher, 1993). Additionally, it has been shown that 41% of recommended treatment is never carried out. Evidence suggests that this is true even when the outcomes of such treatments have a high degree of associated success (Ginsburg, 1996).
Further, it has been shown that many people with infertility may not seek evaluation or complete treatment because of excessive out of pocket expenses, or because insurance coverage is either unavailable or inadequate (Henifin, 1993: Ginsburg, 1996). These situations leave many infertile women with barriers to care they need and want. Therefore, the opportunity to engage in the self-determined life pursuit of a biological family is blocked or impeded.
The national average annual cost per family health care insurance premium is $4,800 (Alan Guttmacher Institute, 1995). This fact would seem to suggest that family coverage would be similar. However, according to the American Society of Reproductive Medicine (Ginsberg, 1997), coverage for infertility diagnosis and treatment ranges from less than 10% in states such as New Mexico and Kentucky, to 71% to 90% in States such as Arkansas and Massachusetts. Further, with regards to insured women, there has been evidence of gender-biased reimbursement policies that hamper entry into the system of health care in the United States (Fuchs & Perreault, 1986; Jenker, 1991; Shattuck & Schwartz, 1991; Epstein, 1997). Many conditions in women, such as eating disorders, chemical dependency, sexual dysfunction, life cycle transitions and reproduction itself, have been either considered not a bona fide health problem or deemed a psychiatric problem separate from primary health care needs.
Although the etiological factors in infertility are spread proportionately between the sexes, overt therapeutic measures are always seen actualized as a pregnancy in the woman. Infertility has seemingly become a contemporary problem. However, the inability to procreate and concern about that inability are documented throughout history (Sandelowski, 1993). Furthermore, attempting to reverse infertility and re-establish fertility that leads to childbirth and family building is prevalent in most cultures (Rosenblatt et al., 1973; Sandelowski, 1993; Marsh & Ronner, 1996).
There has quite literally been a revolution in the techniques and treatments for infertility in the last two decades. Yet, to the population in need, access to these treatments remains elusive, arbitrary or non-existent. Public policy on this health care issue appears to have been influenced more by popularized myths and prejudice rather than by research and science (Milsap, 1996). The newer treatments for infertility with better outcomes at reasonable costs have been labeled either a waste of social resources or an extravagance (Hann, 1991; Hidlebaugh, Thompson & Berger, 1997; Griffin & Panack, 1998).
METHOD
A convenient, nonrandom sample of women (between the ages of 20 and 49 years, had family healthcare insurance, had infertility treatment within the last seven years and were able to read, write and speak English) who had experienced infertility treatment (n=242) participated in the survey completing the Access to Infertility Care Scale. The total sample included 104 women from states that had a comprehensive infertility insurance mandate (Massachusetts, Rhode Island, Illinois) and 138 women from states without a comprehensive infertility insurance mandate (all other states).
Overall the women who participated in the study ranged in age from 21 to 49 years (M = 34.7, SD = 5.4). The women from non-mandated states (group 1) ranged in age from 23 – 47 (M = 33.5, SD = 5.3) and from mandated states (group 2) 21 – 49 (M = 36.3, SD = 5.1). Table 1 summarizes other sample demographics and characteristics of the population such as: ethnicity, occupation (professional -nonprofessional), type of insurance (commercial, indemnity, HMO, self-insured) and status of the infertility (still in treatment, have biological children, have adopted children, not in treatment without children).
Procedure
Following approval of the University of Rhode Islands’ Institutional Review Board, 450 questionnaires were distributed by mail and 242 were returned over a six month period of time. Once the Access to Infertility Care Scale_survey (was returned it was scored and grouped according to the participants geographic location and infertility insurance mandated status (social opportunity context). Confidentiality was accomplished by securing all collected data in a locked file and identifying respondents by a number only. A sample of 242 criteria appropriate women was a sufficient sample size for exploring both the perceptions of access to infertility care experience and the underlying psychometric properties of the Access to Infertility Care Scale.
Instrumentation
Based on a concept analysis and the development of a theoretical and operational definition for access to infertility care, the Access to Infertility Care Scale (Griffin, 1996) instrument was developed (Gable, 1987), pilot tested and restructured to be psychometrically sound (Munro, 1997) and used in this study. The revised Access to Infertility Care Survey (Griffin, 1999) that was used is a 22 item, four point Likert (1932) scale (range 0-88) with ten Entry-barrier items (range 0-40) and twelve Fair chance of passage items (range 0-48). Added to the questionnaire was one follow-up qualitative question asking individual women if they felt that they had a fair chance to be treated for infertility (Tilden, Nelson & May, 1990).
DATA ANALYSIS
Descriptive statistics were used to describe the sample, as performed on the Statistical Package for Social Sciences (SPSS 9.0, 1997). A t test was used to compare the means between women in states with infertility mandates and states without mandates (Table 2), based on: total access to infertility scores (Table 3); total entry barrier scores (Table 4) and total fair chance of passage scores (Table 5). The items from the IAICS related to ‘Entry’ and ‘Passage’ are compiled in Table 6. The qualitative data from the follow-up question was incorporated into the discussion section in support of the quantitative findings (Sapsford, 1999; Tilden, Nelson, & May, 1990).
Reliability analysis was conducted using Chronbach’s Alpha on the items contained in the IAICS survey (Griffin, 1999). The coefficients listed in Table 5 correspond with the total items, entry barrier items and passage items respectively.
The reliability coefficients were greater than .70 (Nunnally, 1978) supporting the consistency of the measure.
DISCUSSION
This study looked at access to infertility care and access was the dependent variable. The Indicators of Access to Infertility Care Scale (Griffin, 1999) was designed to measure ‘indicators of access to infertility care’ (Table 6). The independent variable of ‘state mandated comprehensive infertility insurance’ (potential cause of dependent variable ‘access’) is identified as a form of ‘social redress’ in the context of Mithaug’s theory (1996). The condition of ‘mandated infertility insurance’ was definitely a factor in whether or not ‘access to infertility care’ was realized by infertile women. It appeared to also be a factor in the subsequent decisions they made regarding family building.
The women who responded to this study numbered 242 and came from 40 different states in the United States. As reported, respondent women from states with mandated infertility health care insurance scored significantly higher in access than their counterparts in non-mandated states (Table 2). The women in the mandated states were on average older (M = 36.3 vs M = 33.5) and there were less of them in active treatment (38.5% vs 54.3%). Having less women in treatment in states that had mandated comprehensive insurance runs contrary to popular perception. An articulated policy argument is that to mandate comprehensive coverage would increase the use of the treatments (Milsap, 1996). That argument did not hold up in this study.
The group with mandated infertility insurance was also found to have more adopted children rather than biological children (15.4% vs 2.2%). This finding is contrary to much of the literature on the speculated effects of mandated infertility insurance, as well, (Britt, 1997; Milsap, 1996). However, it is a consistent finding in the application of the theory used. The opportunity to make a choice on your own behalf generally dictates that it will be one that is good for that individual (Mithaug, 1996).
Identifying ‘mutable’ (those that you can effect a change upon) causes of non-access was identified multiple times in the literature on access to health care in general and has specific implications for infertility care, as ‘mandating or legislating’ is action oriented and concrete (Aday, Andersen & Flemming, 1980; Andersen, 1995). Mandating access to health care for women also has a long history. The 1978 Anti-Pregnancy Discrimination Act and the Women’s Health Equity Act (1991) are perfect examples.
Adjusting the ‘opportunity context’ through ‘social redress’ has a great impact in the area of infertility care. The concern in this study was ‘equitable or fair access to infertility care’ and the social redress was state mandated comprehensive infertility coverage. How individual women entered or did not enter the infertility care system was greatly affected by their geographic location and the social opportunity context or mandated infertility insurance. The qualitative question of whether or not the individual felt that they had a ‘fair chance’ to be treated for infertility correlated with the access score findings. Women who had high access scores felt that they had a ‘fair’ chance to be treated, women who had low access scores did not feel that they had a fair chance.
It should be emphasized that all the respondents in this study had a form of ‘family’ health care insurance considered to be the most comprehensive form. Identifying the degree of lack of access to infertility care’ in the ‘uninsured’ population was not included in this study. Women of color experience impaired infertility at a rate of 5 to 1 (Marsh & Ronner, 1996). However, this population is known to be under-insured or non-insured (Women’s Health Insurance Study, 1994). This is support for the overt marginalization of women with infertility treatment needs.
All women faced with impaired fertility situations deserve to have access to ‘state of the art’ comprehensive care. The etiologic phenomena or gender in fertility problems should not dictate the availability of treatments with measurable outcomes. All forms of treatment for infertility warrant further and ongoing investigation along with more research. This is especially true as it relates to the study of ‘access to infertility care’. Women need to have access to care that women need.
Mandated comprehensive insurance coverage for infertility enables women to make family building decisions based on their own needs and appears to give them a sense of ‘having had a fair chance’ to do so. Women and reproduction are trivialized by entrenched policy without scientific basis or equitable gender based social health policy.
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ACKNOWLEDGMENT: The University of Rhode Island College of Nursing.
Martha Griffin, PhD, RN, CS, Program Coordinator Nursing Staff Development, Brigham Women’s Hospital, Boston, Massachusetts.
Copyright Riley Publications, Inc. Center for the Study of Multiculturalism and Health Fall 2003
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