Dangerous Assumptions

 

        Almost everyday I read about some travesty committed against women. From democracies and totalitarian regimes alike, subtle tidbits about increasing instances of diminished rights, restricted access, or the loss of basic freedoms infiltrate the important news about war and drugs and politics and men. Articles buried next to advertisements for bed sheets and towels announce with an ice-cold clarity how women are flogged and stoned and burned. I shake my head, realizing that women remain at a disadvantage, that because of our gender we face more violence, more social restraints, and fewer opportunities. And even though I live in the United States and am reassured by the numerous advantages American women possess, I am tempered by the knowledge that it took us one hundred and forty-four years to secure the right to vote.

        Yet I remain optimistic. I hope to see the day when, in the words of Sarah Margaret Fuller, "freedom for Woman as much as for Man shall be acknowledged as a right, not yielded as a concession" (1). So I was shocked, even terrified to discover that the greatest danger facing women, the greatest threat to our very lives, did not arise out of some intentional malice, but was born out of foolish ignorance. In a century where technology advanced from steam ships to space shuttles, everyone assumed medical care established on research based solely on men would easily translate into effective care and treatment for women as well.

        Since 1900, advances in medical care have increased the life expectancy of women by thirty years, but women suffer more chronic disabilities and endure less than satisfactory resolutions to illness more often than men (2). Social attitudes helped to justify a woman's struggle to achieve vibrant health because such dilemmas reinforced the accepted beliefs that women were frail and weak. It wasn't medicine that was failing women; it was women failing themselves. The fact that women were being treated with standard procedures and medications tested only on men was considered inconsequential. And even though women were dying at a higher rate than men, though curious, established medical care was not believed to be a contributory factor in their mortality.

        Despite the obvious physiological differences between the sexes, the medical profession assumed that therapies evaluated for and tested on men would produce sound medical care for the fairer sex. Not only did women receive treatments and therapies tested exclusively on men, some treatments were never tested on a human subject at all. Women had become "guineas pigs for thousands of medications and many procedures," according to Helen Kornblum, a medical social worker and member of the Washington University Medical School Studies Subject Committee (3). It was a recipe for disaster.

        Two highly publicized tragedies that were the direct result of not testing women during research trials are the drugs thalidomide and DES. During the 1960s and 1970s, these drugs were marketed as safe for use by pregnant women. Thalidomide was a sedative and an anti-nausea drug which when ingested by women in the early stages of pregnancy resulted in widespread birth defects for their children. DES, a nonsteroidal estrogen-like compound, was "originally viewed as a therapeutic breakthrough for women threatening to miscarry" (4). It turned out to be a carcinogen. Both drugs were already on the market and widely used when the side effects captured the spotlight. Thalidomide babies must live with stunted arms and legs while the children of DES mothers are haunted with the lifelong prospect of cancer because medical researchers failed to consider women as viable candidates for their studies.

        What is terrifying is that these incidences did not prompt medical researchers to include women in future drug studies. Even today women are prescribed drugs that were never tested on a single female. And according to Helen Kornblum, "Most . . . are not advised that the medications . . . prescribed have never been tested on women. We really don't know the proper dosage . . . for women or how these medications interact with other medications and hormones" (5). Scarier still is the failure to develop pharmaceuticals and treatments specifically designed for the needs of women because females were systematically excluded from research studies in order to protect them.

        The main reason women have been excluded from studies is their potential to become pregnant. Medical researchers and those who fund the studies, including the National Institute of Health, feared that if a woman became pregnant during a study, the fetus might be harmed. This sexist line of thought never considered that women might just be intelligent enough not to become pregnant during research trials nor did researchers consider incorporating birth control devices into their studies. It didn't seem to matter that millions of women's lives could be irreparably damaged because of such gender exclusion. But what is sadly ironic about this argument is that men "participate in studies all the time, even though men may impregnate a woman with sperm that may be vulnerable to certain drugs [also endangering a fetus]" (6).

        Women were relegated to a position of lesser importance simply because of their capacity as reproductive repositories. The policy excluding women from research was not developed to protect them. It was designed to protect the fetus; something the Supreme Court determined was not a person as defined by our Constitution. Policy was being initiated that protected potential life over that of existing life. And as a consequence of such noble determination, healthcare lost "the opportunity to gather valuable information about how drugs and treatment affect women" (7). And nowhere was this loss felt more than in the area of heart disease.

        In 1992, according to statistics gathered from the American Heart Association, 479,000 women died of cardiovascular disease. The numbers for men totaled 444,000 and on the surface these numbers do not seem disproportionate; the slightly higher numbers for women can be justified overall by higher population percentages. The numbers do become alarming when additional data is considered. Men are three times more likely to develop cardiovascular disease than women are, but the rate of death for both sexes is about the same (8). Cardiovascular disease accounts for 43% of all female deaths making it the number one killer of women; almost twice as many deaths as all forms of cancer combined. And unfortunately many of those deaths have to do with gender prejudices and the lack of research data specifically drawn from female test subjects.

        When men complain of chest pain, they are put on heart monitors, while women's complaints are taken less seriously and the resulting treatment is usually nothing more than a tranquilizer. Washington cardiologist Elizabeth Ross, in her book Healing the Female Heart reports "I have seen countless patients with serious heart disease told they were anxious or depressed, and others who have had symptoms that they brushed off as indigestion or fatigue. When a woman complains of chest pain, she may be given medicines and a gentle reassurance that the discomfort is 'just nerves' or menopause or empty-nest syndrome.' " (9). And because women's symptoms are not initially associated with heart disease, doctors are far less likely to employ the aggressive treatments so common in the treatment of cardiovascular problems. Unlike men, women are not commonly referred for testing when complaints first arise. They are not offered subsequent pharmaceutical treatment for clot dissolution nor are they readily considered for angioplasty (10). Consequently, women are diagnosed later in the progression of the disease when their health status is more precarious.

        Because of this doctors are more apprehensive about treating women with surgery or angioplasty. Women tend to suffer a higher percentage of complications than men do. They "often fare poorly after such treatment because they are older, sicker and have more coexisting medical problems" (11). Yet even though women tend to be sicker when they are eventually treated for heart problems, "underlying anatomic and physiologic differences in a woman's heart" point to the need for alternative protocols and therapies that "recognize [women's] biological uniqueness" (12). A significant example of that biological uniqueness is the relationship of heart disease, high cholesterol, and gender.

        Nearly everybody has heard about the dangerous connection between heart disease and high cholesterol, but standard guidelines identifying high levels of total cholesterol as a significant risk factor for cardiovascular problems are relevant to men, not women. While cholesterol is a factor with women and heart disease, high total cholesterol is not the risk, but rather low HDL (high-density lipoprotein) cholesterol is. Blood cholesterol levels are divided into two categories, good and bad (13). Good cholesterol or HDL is believed to clean away the plaque that adheres to the walls of arteries while bad cholesterol or LDL (low-density lipoprotein) actually attaches to the artery walls as plaque. A high total blood cholesterol is considered a significant indication that there are elevated levels of LDL cholesterol in the blood and steps should be taken to adjust diet or take medication to lower the risk of a heart attack. However, while a high LDL is certainly an alarm for men, a low HDL is considered extremely dangerous for women. Normal levels of HDL for the average man are 40-50 mg/dl and for women, it is 50-60 mg/dl. Numbers less than 35 are considered low, and if that is the case then medical experts are assuming that a fifteen point drop in HDL levels is tolerable for women while anything more than a five point drop for men is not. Yet conventional practice has not changed and low levels of HDL in women go undetected (14).

        As much as these cholesterol findings display a definitive difference in the sexes for the detection and treatment of cardiac risk factors, the initial warning signs of cardiovascular disease or heart attack also exhibit symptoms that are unique to each gender. Men often experience a crushing vise-like chest pain that may move to the left arm, neck, or upper abdomen. A man appears ashen, feels clammy, and becomes short of breath; "women often have atypical symptoms such as jaw or tooth pain, backaches, neck pain, nausea or shortness of breath" (15). Heart disease strikes women ten to fifteen years later than men when women are in their 50s and 60s. At this age many of their symptoms can be mistakenly associated with menopause and out comes the tranquilizers.

        But enough was enough. Along with Colorado Representative Pat Schroeder, the Women's Issues Caucus urged the federal government to convene a task force and in 1983 that task force concluded that the "historic focus on men 'compromised the quality' of women's health care" (16). In 1987, only 13.5 percent of all federal funds issued for medical research focused on women's health issues (17). While the National Institute of Health immediately took up the cause of women and began urging researchers to include them in their studies, the government found that by 1990 little difference had been made in the format of research studies.

        The National Institute of Health, under the leadership of its first woman director, Dr. Bernadine Healy, created the Office of Research on Women's Health (ORWH) in 1990 to promote, stimulate and support efforts "to improve the health of women through biomedical and behavioral research" (18). Their most significant work revolved around the passage of the NIH Revitalization Act of 1993 (Public Law 103-43) which strengthened and revitalized NIH guidelines "to require the inclusion of women and minorities in clinical studies" (19). ORWH makes sure that the new policy is uniformly implemented throughout the NIH and it was through the offices of the ORWH that the Women's Health Initiative (WHI) was developed and implemented. This "$628 million, 15-year health study will include a randomized, controlled clinical trial examining strategies to prevent heart disease, osteoporosis, and breast and colorectal cancer in postmenopausal women" (20).

        The American Medical Association supports increased funding for women's health issues and issued a report warning the healthcare industry not to generalize to women the results of male only medical testing unless it can be proven to benefit both genders. AMA policy also stated how important it is to ascertain to what extent gender disparities in medical care are a result of biological differences between the sexes, and "to what extent utilization practices and physician-patient interactions are influenced by cultural and social conceptions of gender" (21). With the WHI, the National Institute of Health is beginning to explore what could be the most important health care concern of the 21st century - gender.

        The study will focus on the major causes of death, disability, and frailty in post-menopausal women with an ultimate goal of reducing coronary heart disease, breast and colorectal cancer, and osteo-porotic fractures via prevention, intervention, and risk factor identification (22). Three major components make up the fifteen-year study. The first component, divided into three separate areas, is a randomized, controlled clinical trial of promising but unproven approaches to prevention of the diseases and disorders mentioned above. The trial includes studies into Hormone Replacement Therapy (HRT), Dietary Modification (DM), and Calcium/Vitamin D Supplementation (CaD). The second branch encompasses an eight to twelve-year observational study to identify predictors of disease and the third involves a five-year comprehensive study of community-based approaches to develop healthful behaviors. The initiative, while seemingly thorough, is not without its critics.

        The National Academy of Sciences revealed in a study instituted at the request of the House Appropriations Subcommittee on Health "that the study is flawed and should be significantly modified to ensure that it yields meaningful results" (23). The study indicated that the Initiative should shift its focus from the prevention of breast cancer to the prevention of heart disease, concentrating most of its criticism on the dietary modification study attempting to link a low-fat diet with a reduction in breast and colorectal cancers. The panel found the evidence supporting such claims was weak at best and even if true would not produce a significant enough effect to justify such a comprehensive study. Recommendations for modifications of the Initiative included changing the dietary focus to heart disease prevention and recommended that most of the "information from the study could be obtained in better-designed, smaller and more focused clinical trials that would be less costly" (24).

        The National Institute of Health disagreed claiming that the study could produce the needed evidence and show that a low-fat diet could reduce certain cancers. However, Harvard researchers conducting the Nurse's Health Study found no evidence to support claims that lower breast cancer risks were achieved through dietary modifications (25). This study was certainly taken into consideration when the National Academy of Sciences delivered its assessment of the National Institute of Health's historic study. Yet despite the Harvard data and the National Academy of Sciences' recommendations, the Women's Health Initiative went ahead with its original dietary study and kept all of its original clinical components in place.

        However, what the panel from the National Institute of Sciences and the Congressional Subcommittee did not address was the basic scope of the study. While the Women's Health Initiative is certainly the most comprehensive investigation focusing on women's health, but unless you are nearing menopause, how will this study benefit the rest of the female population? To be sure the NIH is cognizant of the rising age of baby boomers, but once again, women in the prime of life are excluded from a major study. I have to wonder if the National Institute of Health remains squeamish about the potential pregnancy risk factor. When did the possibility of something become so much more important than the chance to gain knowledge about something that is an absolute certainty? Even though I am certain that this study will deliver important information on various problems facing older women, it will not "fill the dangerous gap in our knowledge of . . . nonwhite, young, middle-aged, and pregnant women" (26). Why does the function of our uterus continue to define us?

        It doesn't matter what reasons the NIH gives to justify its reasoning behind this historic initiative, good things will come from it. But it will not answer a myriad of questions concerning women's healthcare that is so desperately needed. The Women's Health Initiative will not answer why drugs "such as aspirin, alcohol, acetaminophen, lidocaine and benzodiazepines, are metabolized differently by women and men" (27). The reasons for the high prevalence of autoimmune diseases, such as lupus, rheumatoid arthritis, and multiple sclerosis, in women will remain a mystery (28). Why is it that organ transplants are more successful when donor and recipient are the same gender?(29) None of these issues are being addressed by this enormous initiative and I suspect that societal and cultural attitudes about the female role as mother still influence protocol.

        As American women we are lucky that even though we still have much more to accomplish in terms of equity, our country continues to move forward and our government continues its efforts to improve healthcare for women. Barriers have been broken and accepted attitudes have been smashed in many areas. We have a lot to be proud of even if we are only beginning to understand the significance of gender-specific healthcare. But unfortunately, attitudes regarding women around the world are not so forthcoming and many social and cultural ideals adversely affect not only their health, but also their very lives. It is something we must keep forever in our minds; for every step forward we take, millions are pushed back.

        While research facilities in the United States balk at the prospect of having pregnant women in their studies, women in Third World nations are defined almost exclusively by their fertility. Woman "are under considerable pressure to reproduce: to provide sons for their husbands or his family, his clan or lineage; or to provide family workers" (30). Women are put at greater risk in terms of their health from cycles of continuous pregnancy and lactation leading to nutritional deficiencies, anemia, heart failure, and even death (31). Attempts to introduce contraception as a way to space out pregnancies has met with an ancient obstacle: "a husband's approval is still legally required for his wife to use family-planning services" (32).

        Yet worse than the drain on their health that frequent pregnancies induce is the curse of being barren or having a child die. In sub-Saharan Africa, it doesn't matter what the reason is for such tragedies, the woman is always considered to be at fault and bears such responsibility as a sign of her sinfulness (33). In many communities she is ostracized, sometimes isolated completely because she possesses no value in the eyes of her family or the heart of her community. She is ultimately defined by the function of her uterus.

        Beyond the paramount importance of a woman's fertility in many of these developing countries, cultural beliefs play an important role in further defining what constitutes a proper woman. The most prolific and widespread cultural practice is female circumcision. In many nations, particularly on the continent of Africa and in many parts of the Arab world, a woman's social status, her very acceptance within her community, hinges on having this procedure, this rite of passage, performed. And while religion (Islam) is a major reason for its prevalence, societal beliefs are an important influence as well. In Egypt, it is estimated that 91% of all women have been circumcised, Muslim and Catholic alike. A woman's sexuality is not as important as her fertility. Neither is the suffering she must endure in order to fit in.

        Female circumcision in its most simple form, Sunna, involves the removal of the prepuce that covers the clitoris glans and often the clitoris itself (34). If the clitoris is not removed, it is usually still damaged. At most, only 22% of females, aged 15-19, undergo this form of the procedure (35). Most women endure the Pharonic form or infibulation even though it has been outlawed in many countries. As many as 74% of women, 15-19, not only have their clitoris removed, the labia minora and majora are cut and scraped, and the vulva is pinned or sown shut leaving only a small opening for the passage of urine and menstrual blood (36). Woman undergoing this form must continue to have numerous surgeries to allow for intercourse at marriage and childbirth.

        The health risks involved in these procedures are enormous. In many instances the surgery is performed in an unsterile setting, without any type of anesthesia, performed by a barber or midwife using dirty instruments or even a piece of broken glass. The chances of infection are great as well as the possibility of hemorrhage, sometimes, even death occcurs. The New England Journal of Medicine listed numerous other health problems associated with genital mutilation, particularly the Pharonic form, including "pain leading to shock and death, severe anemia, abscesses, ulcers, septicemia, chronic pelvic infections, dysmenorrhea, possible infertility, urinary stones, kidney damage, dermoid cysts, and severe dyspareunia" (37). Efforts to curb this practice have begun cautiously in Kenya and a few other nations, but experts optimistically believe it can be eradicated in three generations. It should be noted that the United States did not officially outlaw this procedure until 1996.

        The health of women around the world and in the United States continues on an arduous journey that truly began only a few short decades ago. Internationally women struggling to survive in Third World nations must endure an existence that bases their entire identity on an ability to bear children, an ability to bear sons. These same women, like many women through out the world, remain subordinate to men, many to the point of risking their very lives, if not their health, in order to be accepted into their community. The health of women in developing countries is of little importance in the grand scheme of things.

        Historically, the United States, though certainly not so blatant in its disregard, has placed women's health (and just about any women's issue) in the backseat on the highway of importance. Healthcare here is purported to be the most technologically advanced, the most modern, and yet ignorant assumptions, based on old time sexist beliefs, not only delayed the progress of women's health issues, but cost a lot of women their very lives. It's really not so different from the cultural and societal beliefs of less progressive nations. For more than two hundred years, our nation turned a deaf ear towards the cries of more than half its population.

        On March 31, 1776, Abigail Adams composed a letter to her husband, John where she requested that the framers of our new nation "Remember the Ladies, and be more generous and favourable to them than your ancestors" (38). I think someone has finally begun to listen.

-Susan M. DeClercq

18 April 2000

ENDNOTES
1.) Fuller, S.M. "Woman in the Nineteenth Century". The Heath Anthology of American Literature. (Houghton-Mifflin, New York: 1998, 1721).
2.) Blumenthal, Susan J. "Critical Women's Health Issues in the 21st Century". JAMA, The Journal of the American Medical Association, Feb 2, 2000: 667.
3.) Knudsen, Christie. "Exclusion from research endangers women's lives." Off Our Backs. February 1996: 1.
4.) Ibid., pg 1.
5.) Ibid., pg 1.
6.) Ibid., pg 1.
7.) Ibid., pg 1.
8.) Berg, Stacie Zoe "Heart disease is the ticker in women's health issues". Insight on the News May 27, 1996: 41.
9.) Ibid., pg 1.
10.) "A common procedure in which a balloon is inflated inside the blocked blood vessel, pushing back a clot, and thereby restoring the flow of blood to the heart" Knudsen, Christie. "Exclusion from research endangers women's lives." Off Our Backs. February 1996: 1.
11.) Berg, Stacie Zoe "Heart disease is the ticker in women's health issues". Insight on the News May 27, 1996: 41.
12.) Knudsen, Christie. "Exclusion from research endangers women's lives." Off Our Backs. February 1996: 1.
13.) Cholesterol information from the McKinley Health Center Web Site at www.McKinley.uiuc.edu/. 04/15/2000.
14.) Knudsen, Christie. "Exclusion from research endangers women's lives." Off Our Backs. February 1996: 1.
15.) Berg, Stacie Zoe "Heart disease is the ticker in women's health issues". Insight on the News May 27, 1996: 41.
16.) Knudsen, Christie. "Exclusion from research endangers women's lives." Off Our Backs. February 1996: 1.
17.) Ibid., pg 1.
18.) ORWH Home Page, National Institute of Health Web Site at www4.od.nih.gov/orwh. 04/15/2000.
19.) Ibid., pg 1.
20.) Shelton, Deborah L. "Not just little men. (Women's Health Initiative will study ways
that women's health differs from men's)". American Medical News, May 5, 1997: 14.
21.) Ibid., pg 2.
22.) Women's Health Initiative Web Site at www.nhlbi.nih.gov/whi. 04/16/2000.
23.) Schaffer, Margaret. "Women's health study under gun: critics say dietary arm should focus on heart disease. (Women's Health Initiative failures to address issues of risk factors in older women's health)". Medical World News, Dec 15, 1993:19.
24.) Ibid., pg 2.
25.) Ibid., pg 2.
26.) Knudsen, Christie. "Exclusion from research endangers women's lives." Off Our Backs. February 1996: 1.
27.) Shelton, Deborah L. "Not just little men. (Women's Health Initiative will study ways
that women's health differs from men's)". American Medical News, May 5, 1997: 14.
28.) Ibid., pg 3.
29.) Ibid., pg 6.
30.) Santow, Gigi. "Social roles and physical health: The case of female disadvantage in poor countries". Social Science & Medicine. 1995: 147-161.
31.) Ibid., pg 150.
32.) Ibid., pg 150.
33.) Ibid., pg 151.
34.) Ford, Paul Jason. "Female Circumcision". Available at www.vanderbilt.edu/AnS/philosophy/Students/FordPJ/CONTENTS.HTM.
35.) Santow, Gigi. "Social roles and physical health: The case of female disadvantage in poor countries". Social Science & Medicine. 1995: 147-161.
36.) Ford, Paul Jason. "Female Circumcision". Available at www.vanderbilt.edu/AnS/philosophy/Students/FordPJ/CONTENTS.HTM
37.) Ibid., pg 2.
38.) Adams, Abigail "Letter from Abigail Adams to John Adams, March 31, 1776". The Heath Anthology of American Literature. (Houghton-Mifflin, New York: 1998, 905).

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