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Title: Women : the missing and neglected persons in the AIDS pandemic
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Title: Women : the missing and neglected persons in the AIDS pandemic
Physical Description: Book
Language: English
Creator: Monograph
English ( Contributor )
Christian, Cora Le Ethel, 1947- ( Contributor )
Publisher: Caribbean Studies Association
Publication Date: 1995
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Subject: Caribbean   ( lcsh )
Spatial Coverage: North America -- Caribbean
Caribbean
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Volume ID: VID00001
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    Title Page
        Title page
    Abstract
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    Main
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    Bibliography
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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.












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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.












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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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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












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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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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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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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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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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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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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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.












Women and Aids 18
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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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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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