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).
Return to Home
Page