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WOMEN:
THE MISSING AND
NEGLECTED PERSONS
IN THE AIDS PANDEMIC
CORA L.E. CHRISTIAN, M.D., MPH
CARIBBEAN STUDIES ASSOCIATION
XXTH ANNUAL CONFERENCE
CURACAO
MAY 22-27, 1995
Abstract
WOMEN: THE MISSING AND NEGLECTED PERSONS
IN THE AIDS PANDEMIC
CORA L.E. CHRISTIAN, M.D., MPH
The proportion of U.S. female AIDS cases due to injection drug use
has stabilized; the proportion due to heterosexual transmission,
on the other hand, has more than doubled since 1983. Initially,
AIDS cases were the addicts, the alcoholics, the prostitutes, the
homeless; but now they are the noncompliant, the unsuspecting, the
ones who don't believe or suspect that they are at risk. Across the
Caribbean a similar phenomenon exists. If we focus internationally,
we will see that AIDS is the most effective apartheid weapon. This
article reminds us who they are, how they feel, how they live, what
they do, what they get, and where they should go.
Women and Aids 2
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WOMEN: THE MISSING AND NEGLECTED PERSONS
IN THE AIDS PANDEMIC
I am clear that I cannot tell you anything new and revealing about
HIV/AIDS. You know the alarming statistics. You know women are
the fastest-growing population to be infected by HIV, and AIDS is
now the leading cause of death in women aged 25 to 44 (CDC, 1995).
You know that while the proportion of U.S. female AIDS cases due to
injection drug use has stabilized, the proportion due to
heterosexual transmission has more than doubled since 1983 (Tross,
1994). In nearly 60% of all U.S. female cases due to heterosexual
transmission, the infected man is a substance user and for New York
City, considered to be the trend setter in this epidemic, the
percentage is closer to 89% (Tross, 1994). Initially, they were
the addicts, the alcoholics, the prostitutes, the homeless; but now
they are the noncompliant, the unsuspecting, the ones who don't
believe or suspect that they are at risk. I can tell you that
across the Caribbean a similar phenomenon is occurring, initially
more prevalent in the female sex worker who bartered sex for drugs
and/or money. But now the increasing numbers are like those in the
U.S.A. And if we focus internationally we will see that AIDS is
the most effective apartheid weapon. In 1990, UNICEF forecasted
Women and Aids 3
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May, 1995
that between 3.1 and 5.5 million children would shortly be orphaned
in ten East and Central African countries alone (World Health No.6,
Dec., 1993). Right in my home, the USVI, we read as late as March
25, 1994, that one third of the one out of every eight persons who
are infected are native born Virgin Islanders; one third is from
the United States; and one third is from the other islands in the
Caribbean. (St. Croix Avis, March 25, 1994 p.l). I would consider
that a great equalizer. And of the women who are infected,
bisexuality and male prostitution are the silent culprits. In
fact, the surveillance director, Jameel Muhammed, is quoted as
stating our V.I. statistics are showing that women are getting
closer and closer to equalling men in having this virus. He states
that bi-sexuals rarely come out the closet and could be infecting
their wives or girlfriends. He speaks to the issue of anal sex and
its dangers. In Puerto Rico, noted as number two per capital for
HIV/AIDS cases, Jose Toro, AIDS foundation director for Puerto
Rico, states that some 92% of the children with AIDS in Puerto Rico
contracted the virus from their parents.
"The world does not require so much to be informed as to be
reminded" (Hannah More). I need to remind you who they were, who
they are, how they live, how they feel, what they do, what they
get, and where they should go.
Women and Aids 4
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May, 1995
But before I do so, I want to tell you a short story to set the
right mood for this discussion. While she was enjoying a cruise to
the U.S. Virgin Islands, Kim Bassinger, the famous actress, noticed
that another female passenger at the next table was suffering from
a bad cold. "Are you uncomfortable?" she asked sympathetically.
The woman nodded. Ms. Bassinger continued. "I'll tell you just
what to do for it," she offered. "Go back to your stateroom and
drink lots of orange juice. Take two aspirins. Cover yourself
with all the blankets you can find. Sweat the cold out. I know
just what I'm talking about. I'm Kim Bassinger from Hollywood."
The woman smiled warmly and introduced herself in return.
"Thanks," she said, "I'm Dr. Jocelyn Elders, Surgeon General of the
United States."
Although the above is not a true story, it re-emphasizes that my
role is only to remind you of the scourge of the disease.
Who were they?
They were gay, homosexual; then they were IV drug users,
alcoholics, prostitutes. They were persons who in the opinion of
some were on the fringes of society; they were not really people of
importance; they were people who got what they deserved from the
misguided behavior they had.
Women and Aids 5
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May, 1995
Who are they now?
They are still the homosexual, the IV drug user, the alcoholic, the
prostitute, but now they are also the terminally ill who utilize
many of our health care resources; the bankrupted who utilized all
their resources to survive just one more day; the mentally ill who
have psychoses as the virus rearranges their thinking processes and
puts them into a living hell; the homeless who live in the streets
for they have no more resources, they have been discarded; the
undereducated who just knew it could never happen to them; the wife
who knew she was safe, for her husband is her only partner; the
housewife who now and then had a fling; or the secretary who goes
to an office party, has always admired her boss who is now a little
tipsy, and neither could say no; the child who happened to be born
to an infected mother. Given the universal scenario, it could be
you or me. No one is excluded; no one is safe unless we take
special precautions.
How do they feel?
They feel worthless, ashamed, guilty, alone, tired, desperate,
detached, depressed, isolated, helpless, stressed, angry, anxious,
disoriented, delirious, tense, burdened, weary, uneasy, afraid,
apprehensive, impatient, useless, unimportant, quarantined,
separated, segregated, secluded, suicidal, homicidal. Apply all
Women and Aids 6
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these, sometimes at the same time, and you'll understand how they
feel.
How do they live?
They live with a lack of health care or poor health care; they live
with a lack of proper housing or no housing; they lack nutrition,
clothing, transportation, insurance, support.
What do they do?
They escape. Sometimes they escape the helplessness and
hopelessness with drugs, alcohol, sex, and crime. Sometimes they
escape by just giving up. Sometimes they escape by suicide.
What do they get?
They often get barriers. They get the barriers of money, politics,
lack of resources, prejudice, lack of education, judgment, or
religion.
Where They should go:
Professor Rebecca J. Cook of the University of Toronto states that
some governments are failing to acknowledge and assure the health
Women and Aids 7
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May, 1995
rights of women by denying them access to a basic standard of
health care. Women are being overwhelmed with having to provide
care for chronically ill husbands, and brothers. When women fall
ill, now at an increasing rate, who will care for them? Because of
their low social status in many societies and lack of economic
independence, they are limited. Even after adjusting for income,
race, insurance and geographic differences, Dr. Hellinger of the
Agency for Health Care Policy and Research states that females with
AIDS receive fewer health services than males with AIDS. A female
with AIDS is 20% less likely than a male injection drug user to be
hospitalized for AIDS-related conditions (Research Activities
No.171 December, 1993).
Yet the little data on female sexual partners of intravenous drug
users point to the lack of risk reduction behaviors, or even intent
to reduce risk. In one sample of approximately 1900 non-IDU, 70%
had not taken any safer sexual precautions during their last sexual
encounter with their main partner when they knew other partners
existed. Reluctance to initiate, or even consider, methods of
sexual protection that might have the potential to seriously
disrupt their primary sexual relationship, their family home and
their primary source of income is probably a common barrier to HIV
risk reduction (Tross, 1994).
Women and Aids 8
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May, 1995
In 1993, at the Caribbean Studies Association Conference in
Jamaica, Claudia Chambers of the University of the West Indies and
Professor Claudia Mitchell of the University of California reported
on the sexual behavior and its related attitudes and practices of
men and women inside and out of relationships in one Caribbean
country. This behavior can be applied to many other countries both
in and outside the Caribbean. Because women find themselves in
subordinate positions, it is sometimes difficult for them to
negotiate the terms, including the use of condoms. Some use sex as
the unit of exchange, and offer or withhold based on receipt of
money or goods. In common law relationships, the bargaining
aspects and the risks seem to be great because the MAN both "buys"
and "binds". The price of confrontation with the man may result in
withdrawal of support money for the woman and her children, a
violent response, a withdrawal of "love", a loss of acceptance.
"Me give enough loving..... him must pay for it.... pay". This is
not prostitution, where materialism has fuelled the wants. This is
transactional sex, a response to the inequalities of wealth and
power, where women's needs to care for child and self, are pitted
against men's allegedly stronger sexual urges. ( Mitchell, 1993).
Further, use of cocaine, particularly crack, also operates as a
powerful obstacle to HIV risk reduction--largely because intense
drug hunger often drives women to indiscriminately exchange sex for
drugs or money with dually addicted men in crack houses (Tross,
Women and Aids 9
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May, 1995
1994). These women seldom perceive themselves to be at risk for
HIV infection.
Despite all that is out there in the media, the impact of the HIV
epidemic on women in 1994 highlights the absence of perceived risk,
intention to protect themselves, and consequently attempts to
initiate safer sexual behavior change. When women are instructed
to use condoms consistently or to abstain from sex, the focus is on
behavior. However there are cultural and psychological precursors
that must be in place before we see a change in behavior. The
psychological precursors are the perceived need to change and the
intent to change (Tross, 1994). The cultural precursors are even
more complex, for race, ethnicity, language, the messenger and the
model all affect the outcome. We, in the health care field, are
trained in biomedicine and are accustomed to predict the outcome of
a given experiment. If substance A is combined with Substance B,
we can expect Outcome C with X percent of confidence. The
situation with HIV, and I suspect with many other health issues,
highlights that this approach will not work.
The recognition of the rich diversity is critical. It is apparent
that in homogeneous societies, ethnicity is invisible and language
is not an issue. But in diverse societies, ethnicity is very
visible and language is an emerging problem. The definition of
ethnicity varies by country. For example, in the United States,
Women and Aids 10
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May, 1995
attention is on skin color, blood quantum and language. Hispanic
America and the Caribbean focus on language and culture. The
United Kingdom, of which some still exist in the Caribbean, focuses
on membership in the British Commonwealth. People who originally
are descendants from India partially, or in totality, focus on
religion, language and caste. If we refocus on the United States,
race is viewed as holding equal or even greater meaning than
ethnicity for nonwhites than whites because race is the defining
symbol of their unequal power relationship with whites. Although
the United States of America represents at least three types of
populations: the native or aboriginal settlers, the dominant
settlers and the emerging settlers, the issue of race is the
defining factor. On one hand, whites are viewed as ethnic groups--
the Irish, the Polish, the Jews, the Italians, the Scottish--and
allowed to have ethnic pride, while for nonwhites talk of ethnicity
is viewed not as pride but politics. The case of the American
Indian tribes or the case of African Americans or Mexican Americans
versus Puerto Rican Americans (Tross, 1994).
I don't believe there is anyone who is unaware that 75% or more of
the women who are infected with the virus are women of color--
Blacks, African Americans, Hispanics, Puerto Ricans. In New York
City, the race of the mother of the Pediatric cases as late as
December, 1993, was 53% Black, 37% Hispanic for a total of 90% of
all cases (Tross, 1994). And still ethnicity is fluid, for it
Women and Aids 11
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changes over the life cycle of the individual as well as for the
group. We can further complicate that with the known fact that it
is necessary to speak to a client or patient in his or her native
language when we speak of issues of sex, HIV, STDs and the ability
to communicate health messages and to successfully give health
services. This aspect of cultural competency is not solved by
interpreters but by providers who are fluent in the language and
culture. Realistic strategies to fight HIV/AIDS must be based on
cultural competency. Hence the cry of varying minorities to see
their own have opportunities to become physicians, dentists,
nurses, physical therapists, social workers, EMTs, etc.
And what about those health care providers? Even if culturally
oriented and competent, are they emotionally ready? In a survey of
health care providers in the Virgin Islands in 1993, 50% of
dentists stated they were not willing to care for HIV/AIDS
patients. Twenty-six percent of physicians and 10% of nurses
stated they too were not willing to care for HIV/AIDS patients.
When asked if they were interested in training in HIV/AIDS care,
33% of dentists said yes. 76% of physicians and 91% of nurses
responded that they were interested in training in HIV/AIDS care.
There was consistency for the nurses and physicians in that those
who were willing to treat wanted more training, yet in the dental
category less wanted training than those who were willing to treat
(Christian, 1993).
Women and Aids 12
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By the turn of the century, AIDS will be the third most common
cause of death in the United States. It already is on our Virgin
Islands top ten list. The increasing presence of HIV in every
community necessitates that primary care providers become involved
in and knowledgeable about caring for patients with HIV. The
growing population of individuals with HIV and their families also
need guidance in seeking and accessing appropriate care.
What about the women? Fortunately, in the U.S.A., the Agency for
Health Care Policy and Research (AHCPR) requires all applicants for
research grants to include minority populations and women in study
populations so that research findings can be of benefit to all
persons in the population under study. Special emphasis must be
placed on including minorities and women in studies of conditions
that disproportionately affect them and especially if they are the
majority. The Clinical Practice Guidelines, which act as a quick
reference guide for clinicians managing early HIV infection, have
several areas that speak to the issues related to women and
children-pregnancy, pap smears, management of infected infants and
children. AHCPR should be congratulated for inclusion of these
groups despite the limited control trials of these populations. It
must be remembered that guidelines are precisely that- guidelines.
If you recall the lady with the cold in the beginning of my
presentation, you would know that this lady speaks of "dancing with
Women and Aids 13
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May, 1995
the bears". Dr. Elders states When you're out dancing with the
bears, you have to make sure you don't get tired and sit down. You
have to wait 'til the bear gets tired, and then you can sit down."
(American Association for World Health Vol. 7, Nos. 3-4 p.9) Dr.
Elders may not have been talking about HIV/AIDS, but she was
certainly talking about the need for us to educate our society on
how to be healthy. She was certainly talking about teaching
responsibility. She was certainly talking to not only Health
providers but Education providers. She was saying that there are
budgets for drug prevention, sex education, AIDS prevention, anti-
smoking campaigns. Yet we do not have one single, comprehensive
health program. "We have lots of little pieces, but we've got to
put them together and make a quilt."
AIDS is a family disease. For all of us, the most significant
relationships and fundamental experiences of life occur within the
family. The family setting is therefore the natural framework for
matters concerning health and, specifically, HIV/AIDS. If the
family's role is important in keeping its members healthy and
protecting them from disease, that role becomes essential when it
comes to treating, rehabilitating and assisting them during
illness.
From the dawn of human history, the family has been at the heart of
human development. The family is the first emotional and social
Women and Aids 14
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support mechanism we experience. It is our first teacher, our first
health care provider. And it is usually the women in the family
who assume responsibility for each of these essential functions.
Whether the extended family of several generations living in the
same household, as exists still in the Caribbean, or the nuclear
family of mother, father and their children or the single parent
family, what unites them all is love partnership, a set of common
values and a vision of the future. But when HIV enters that
family, instead of love, we see fear, shame, helplessness, economic
chaos, educational neglect, hate and hopelessness. And if the
family member who is ill is the mother, then the caregiver, it is
as if the very body of the family is just a shadow of death and
disease. Those most vulnerable to the death of the family are the
children, our messengers from the future.
Times of great social upheaval have always resulted in major
changes in family life. Very often it is the young who represent
the most radical break with traditional values. It is said that
children are the mirror of society; young people are quicker than
older generations to perceive and respond to the trends of the
times. Young activists of the past, with their outpouring of
youthful energy, their indomitable and devoted spirit, proudly
express in the full-voiced singing We shall overcome", their eyes
aglow with idealism, have virtually disappeared from the main stage
of world history (Ikeda). With the realization that, far from
Women and Aids 15
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May, 1995
being a utopia, a paradise at the end of the rainbow, their
"promised land" was in fact a wasteland filled with oppression,
servitude, violence and disease. The world's youth have been drawn
into a whirlpool of confused values. The misconduct of youth and
the rise of crime are symbolic expressions of an underlying
malaise. Although there is no end to the list of people who lament
our future and sound the alarm, President John Silber of Boston
University makes an insightful observation when he says, "The
greatest threat lies within our own borders and within each of us".
A typical example can be found in Greek mythology in the "Trials of
Heracles". The story is that when Heracles was on the verge of
manhood, he came upon a fork in the road and did not know which to
take, at which point two women appeared before him. The one was
fair to see and of high bearing; her limbs were adorned with
purity, her eyes with modesty; sober was her figure and her robe
was white. The other was plump and soft, with high feeding. Her
face was made up to heighten its natural white and pink, her figure
to exaggerate her height. Of course, the former lady was there to
lead Heracles toward virtue and the latter to entice him toward
vice. I will omit what the advocate of evil said, because it is
identical to the surest way to make a child miserable. Here are the
words of the advocate of virtue. "But I will not deceive you by a
pleasant prelude: I will rather tell you truly the things that are,
as the gods have ordained them. For of all things good and fair,
Women and Aids 1
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the gods give nothing to man without toil and effort. If you want
the favor of the gods, you must worship the gods: if you desire the
love of friends, you must do good to your friends: if you covet
honor from a city, you must aid that city: if you fain to win the
admiration of all Hellas for virtue, you must strive to do good to
Hellas: if you want land to yield you fruits in abundance, you must
cultivate the land" (Ikeda, 1994. And I would add "if you treat a
man as he is, he will remain as he is; if you treat him as he ought
to be and could be, he will become as he ought to be and could be."
(Goethe)
We cannot expect youth to espouse values that we ourselves do not
practice. Regardless of the times, there lies unchanging in the
depths of the young human soul an earnestness that responds to
earnestness, a seriousness that reacts to seriousness; this is the
true character and prerogative of youth.
One day I was struggling with my unending number of
responsibilities and projects and wondering as a mother whether I
was neglecting my children, neglecting giving them the quality time
they deserve to grow into responsible, virtuous, honorable, caring
adults. I had tormented myself and anguished over the problem for
several months without a true solution. I went to my father, an
honorable, fair, law-abiding, faithful, responsible man and posed
the question to him. Knowing that he would have much advice for me
Women and Aids 17
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after raising six responsible children with very different
personalities and interests, I sat myself down to listen. He
simply replied, "Children learn by example". That is all he said,
and no more.
Let us by our example treat the roots of our family, the women and
the branches and flowers, our children as we ought to; let us as
individuals, families, communities and nations by our example teach
the concept of cause and effect, of responsibility for our actions,
of nothing gained without effort; of the oneness of humankind with
its environment. Let us by our example care for people who HIV
positive and have AIDS without judgment and give hope when there is
despair.
If we treat each other as we ought to be and should be, we will be
as we ought to be and could be.
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BIBLIOGRAPHY
Simopoulos, A. "New Surgeon General Dancing with the Bears"
American Association for World Health, Vol. 7, Nos. 3-4 p.9.
Centers for Disease Control, The Nation's Health, April 1995 p.10.
Christian, C., V.I. Needs Assessment November 1992 and January.
1995. Unpublished
Dempsey, B. "One out of Every Eight in V.I. is HIV Positive" St.
Croix Avis, March 25, 1994 p.l
Hellinger A. Research Priority Areas"., Research Activities, No.
171, December, 1993, p.4.
Ikeda, D. "Live with Wisdom and an Indomitable Spirit", Seikyo
Times, January, 1994 p. 10
Kalibala, S. & Anderson, S. AIDS in Africa: A Family Disease".
The Magazine of the World Health Organization, No.6, December,
1993, p.8
Women and Aids 19
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May, 1995
Mitchell, C & Chambers, C. "Women and AIDS", (Verbal Presentation
at CSA May 1993)
Tross, S. "Randomized trial of Stage of Behavior change Oriented
Intervention for Inner City Heterosexual Women", HIV Center
Columbia Presbyterian, Cicatelli Associates Proposal of Feasibility
to Vaccine Trial NYC Blood Center. p.l
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