HIV/AIDS and Black Women

The emergence of the AIDS epidemic marked yet another moment in history in which African American women were treated with little respect.  While researchers worked to understand the disease, they focused their attention on the homosexual male community and conducted few studies on how AIDS affected the female body.  Take the issue of race and gender and place it inside the framework of AIDS and the result is underrepresented black women.

Universal struggles of HIV+ women include; a lack of community and an emphasis on the female as the caregiver.  But the average black woman is facing discrimination based on her place as a racial minority as well as the misunderstood female. I will first discuss the collective problems of HIV+ women and then examine the experiences of black women. 

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The sick as caretakers

Remnants of the cult of domesticity and male breadwinner model, women of the 1980s and 1990s were often the sole caretaker of their families.  After the initial shock upon diagnosis, many women describe family members who expected them to return to the same routine of housewife.  Desirèe Ciambrone describes the ways in which this expectation affected women,

Women who are ill are often expected to care for others while simultaneously tending to their own health, which places many women in position of triple jeopardy; that is, they are dealing with their own infection, worrying about possible infection of children, as well as looking after other people with HIV/AIDS.  Having primary responsibility for household labor and child care often leaves HIV-positive women with little time to engage in self care activities (e.g., getting proper rest and exercise), and may prevent them from seeking medical treatment (11). 

It seems that women infected with HIV are not just serving a second shift, but instead a third.  Not only are they physically exhausted, but also still required to care for their family and home.  One woman tells of her depression and the reaction of her fiancè, “’He comes home from work and says, ‘What’d you do, sleep all day now?’ Or he’ll say to me, ‘It’s all in your head. You know, it’s not real.’..I’m like, ‘My doctors are wrong? You’re a doctor?’” (Ciambrone 115).  Many women in Ciambrone’s narrative depict their family members and partners as unsupportive and instead frustrated by the loss of their caregivers. 

Quite a few women refer to their children as their motivation to remain alive. They did not dream of the specifics of their children’s futures, but instead simply longed to be present.  Sheila says, “’My kids are my strength, they do help me cope’” (Ciambrone 111).  Others describe the presence of children as a somewhat bothersome distraction, “’I don’t have time to sit and think about things, you know? Either they’re fighting, or this one is bothering the other one. It’s always something, so I don’t have—I haven’t had really time to [think about my illness]’” (Ciambrone 111).  Women struggled to maintain their personal lives as wives and mothers, while still tending to their own ailments.

Lack of a HIV+ female community

AIDS surfaced in the gay, male community and garnered most of the liberal support, leaving women as unfortunate outliers.  Women complained about both formal and informal support from their community.  Pat describes her frustrations, “’They do more for gay men than they do for women… You never hear anything about gay women, nothin’ for them, or even straight women.  I guess I wouldn’t mind bein’ a man ‘cause I could get more help, you know?’” (Ciambrone 58).  Women, ignored by family, witnessed communities that embraced gay men while leaving HIV+ women to cope with the pain alone.   

Women were not exempt from being labeled deviants and deserving of the virus, but they did not have the support systems like the gay men.  Like the larger demographic of AIDS victims, those who contracted the disease from needle sharing received the smallest amount of sympathy. 

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HIV/AIDS in black communities

AIDS first appeared in the homosexual male community, but has quick invaded the minority populations.  Among 2,942 men who have sex with men tested in 2001, 32% of blacks tested positive, with only 7% of whites testing positive (Loue, Pike 254).  The number of HIV+ women is just as concerning, “Over a thirteen year period the proportion of AIDS cases among women has more than tripled from 7 percent in 1985 to 23 percent in 1999” (Ciambrone 10).  These infected women tend to be IV drug users, non-white, and poor.  Ciambrone suggests that black women may suffer from a lack of support due to domestic violence and racial discrimination in the health field (11).  Take with the challenges based on race, the issues of all HIV+ women, and the black experience is far more unfortunate.

Research studies with minority populations

The Tuskegee Syphilis Study and the story of Henrietta Lacks marked an end of an era in medical research on minorities.  The discussion regarding minority research in the 1980s and 1990s focused on representing minority populations in the studies.  Loue and Pike argue that AIDS brought attention to the health of some of America’s minorities.  Case Studies in Ethics and HIV Research points out the relationship between LGBTQ groups and racial minorities,

All suffer real and often legally-supported discrimination, rejected, restricted employment and educational opportunities, and abuse at the hands of social institutions—including medical and behavioral institutions.  All have endured with some inter-racial variation epidemic—burdens that have, in a number of cases, only served to compound preexisting burdens that are themselves also the result of health discrepancies (Loue, Pike 246). 

The nature of minority research shifted from that of discrimination based on participation to discrimination based on underrepresentation.  Loue and Pike suggest that major problems facing minorities are “inadequate research and medical institution understanding of minority communities and intra-community diversities” as well as “disconnectedness between research and interventions focused on HIV/AIDS, and research and interventions focused on an array of other individual and collective challenges facing minority communities in the U.S.” (Loue, Pike 249). 

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AIDS and the research that followed is a nice bookend to the era of minority testing, but marks a continuation of the lack of representation of American minorities.  Women were excluded from HIV/AIDS education because the impact of the virus on females was overlooked in the early stages of investigation.  Black women, along with black men, were omitted from the discussion because of their race and prejudices regarding the nature of morality and deviancy.  While gay men certainly were not considered moral, the beginning stages of the virus affected white homosexuals.  The hierarchies of minorities in America became evident when race and gender became a determining factor in who was worthy of sympathy and support.  This system placed black females at the bottom of that list.

Sources:

Ciambrone, Desirèe. The Women’s Experiences with HIV/AIDS: Mending Fractured Selves. New York: Haworth Press, 2003

Loue, Sana and Earl C. Pike. Case Studies in Ethics and HIV Research. Cleveland: Springer Science, 20

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The Immortal Life of Henrietta Lacks

We must not see any person as an abstraction.  Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph.

            –Elie Wiesel, from The Nazi Doctors and the Nuremberg Code

Black women seeking healthcare did so with reservations.  Urban legends of doctors as evil scientist circulated in the black community.  This fear of medical professionals was rooted in the scientific experimentation of minorities.  From Nazi research using Jewish subjects to the story of Henrietta Lacks, minorities have reason to be concerned, but they were often left with little to no choice regarding their health care.  The men of the Tuskegee Syphilis Study were coerced into becoming study subjects because medical assistance and small compensations were often provided.  Henrietta Lacks sought medical attention from the public ward of Johns Hopkins hospital, leading to the extraction and unauthorized selling of her cells. While race remained an issue, gender and class become more evident through the story of Henrietta Lacks.

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The cells of Henrietta Lacks have led to the creation of the polio vaccine, chemotherapy, cloning, gene mapping and in vitro fertilization.  Science textbooks and researchers refer to these life-saving cells as HeLa, forgetting to acknowledge the woman who died due to these cancerous cells.  Henrietta’s story is complex and fills a 300-page book, but it is a consensus amongst current researchers that her treatment was unethical.  Henrietta was treated for cervical cancer using radium that ultimately led to her infertility and the painful charring of her belly.  Records show Henrietta was not aware that these treatments would leave her sterile and “’if she had been told so before, she would not have gone through with treatment’” (Skloot 48). Henrietta was not alone in her experiences with the healthcare system and its regard for women.

 

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Too often, women underwent hysterectomies without full knowledge of the implications.  Midge Hart writes of her hysterectomy in 1979, at age thirty-two.  Her experience parallels that of other women who believed they should, “’leave it all to the experts, the shrinks and the M.D.’s” (Hart).  Before the hysterectomy, Hart was taking the birth control pill that only worsened her fibroids.  Her doctor was aware of the risk but failed to inform Hart, leading to a hysterectomy that should have been a last resort, not a simple fix.  Henrietta and Hart’s lack of awareness regarding the treatment of their ailments points to the disparity between the upper class doctors and the working class, as well as the genders.

The treatment of Henrietta Lacks was not an isolated incident, nor was it a surprise to the black community in Maryland.  Feelings of distrust towards Johns Hopkins were strong in the 1950s, but free healthcare in the public ward was often their only option.  Dr. Richard Wesley TeLinde, who developed the Pap smear, “believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (Skloot 30).  For Dr. TeLinde, class remains the dividing line between patients and subjects, but Dr. Howard Jones calls out race.  He wrote, “’Hopkins, with its large indigent black population, had no dearth of clinical material,’” clearly defining research subjects as working class African Americans.  Although it was now the early 2000s, the Lacks family was fearful of Johns Hopkins and many refused to go to the hospital’s public ward.

Henrietta’s husband, Day developed gangrene in his toes, but he still refused medical attention because he “didn’t want doctors cutting on him like they did Henrietta” (Skloot 163).  The family describes the urban legends surrounding Johns Hopkins, stories based on legitimate fears of being test subjects.  Henrietta’s daughter-in-law, Bobbette, describes the anxiety, “’You’d be surprised how many people disappeared in East Baltimore when I was a girl.  I’m telling you, I lived here in the fifties when they got Henrietta, and we weren’t allowed to go anywhere near Hopkins.  When it got dark and we were young, we had to be on the steps, or Hopkins might get us’” (Skloot 165).  These concerns continued but the poor Lacks family still needed money any way they could manage.

In the 1980s, Henrietta’s youngest son, Zakariyya (born Joe, but converted to Islam while in prison), turned to medical studies as a way to survive.  Zakariyya was homeless when he saw an ad for volunteer research subjects that would provide him with money, a warm bed and a few meals.  The fears of Johns Hopkins, and anger concerning the treatment of his mother were not enough to keep Zakariyya from the study.  The allure of free healthcare and compensation were enough to convince many working class blacks to accept their roles as inferior test subjects.

Impoverished blacks struggled to pay for medical care because welfare programs overlooked them.   The Social Security Amendments of 1967 emphasized the male breadwinner model.  Speakers point out the black male’s income, “Only two of out of every five Negro males in our ghetto areas make more than $60 a week,” (Senate 789).  Speaking on behalf of the National Council of Negro Women, Ruth Atkins says, “The Negro female worker is triply handicapped. Concentrated in non-union employment, he is discriminated against on the basis of both race and sex, and inadequate education and training stand between her and successful competition in the marketplace.  As a result, she is paid less, on the average, than Negro and white men and white women” (Senate 774).  Atkins calls for changes to Social Security that would include African Americans in the work training that is provided to white men.  She also suggests day care facilities to enable black women to leave the home.   With the rate of hospital costs increasing at almost double the rate of the average income increase, putting black men and women to work seems like the most sensible change in 1967 (Senate 67).

African Americans were subjected to both social and economic hardships that challenged their access to medical care.  The fear of experimentation, as well as the poverty present in America, led to the continued discrepancies between white and minority health care.

 

Sources:

Hart, Midge. “Hysterectomy: One Woman’s Story.” WomenWise 4, no. 3 (Sep 30, 1981): 10. http://search.proquest.com/docview/231766346?accountid=14244.

Senate. Committee on Finance. Social Security Amendments 1967, Part 2. (Y4.F49:So1/8/967/pt.2)

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown Publishers,

Early impacts of race and class on African American health

My History thesis focused on the Conservative Right’s reaction to the AIDS epidemic in 1980s America and how it impacted students at the University of North Carolina-Chapel Hill.  I found a great deal of reluctance to provide education to Americans due to the 1981 emergence of the virus in the homosexual male community and the transmission amongst IV drug users.  While HIV/AIDS did initially affect groups that were often condemned by the Moral Majority and Conservative Republicans, it quickly became a public health issue that impacted all Americans.  Misinformation concerning the transmission of the virus persisted well into the late 1980s, due to the government’s resistance to provide the American public with the facts.  Surgeon General C. Everett Koop was appointed in 1982 and wanted his first order of business to be education of the American public regarding the transmission of HIV.  Americans in the early to mid-1980s believed the virus could be transmitted through casual contact; kissing, food preparation, insect bites, hand holding, airborne pathogens.  There are four ways in which HIV can transmitted; sexual intercourse, needle sharing, mother to fetus/breastfeeding, and blood transfusions.  This information was not made public until the U.S. government released an official statement in September of 1986 and then Koop released his report in October of the same year.  President Reagan did not publicly address the epidemic until 1987, and according to Koop, Reagan was hesitant to provide education to the public because it would alienate him from his highly conservative supporters.  Withholding life-saving information because leaders disagree on American morality is a deep rooted issue often influenced by race, class and gender. 

            Unfortunately the AIDS epidemic is not the first time the United States failed to protect its citizens from preventable health risks and care for those already in poor health.  Historically, minorities suffered poor health care that further isolated them from the upper class white men in power.  Before researching the specifics of racism present in the AIDS epidemic, I plan on providing some insight into the ways in which the health of black Americans was dealt with following the abolition of slavery.  Starting with the tuberculosis outbreak, then moving on to the Tuskegee Syphilis Study, I intend to show the inequalities of United States health care.

 

Tuberculosis Outbreak

            The Tuberculosis outbreak in the late 1800s and early 1900s presented itself as an issue of race and class rather than a universal public health concern.  Tera W. Hunter, author of To ‘Joy my Freedom, presents an excellent narrative of the tuberculosis outbreak and its impact on black women and their families.  Hunter claims there were three major events in the late nineteenth century that shaped society; slavery was abolished in 1865, the germ theory was validated, and tubercle bacillus was discovered in 1882.  Some Southern, white doctors claimed these newly freed blacks, now not being cared for by planation owners, were not able to tend to look after themselves.  Whites used their own hesitations of black leisure time to frame the TB outbreak, “L.C. Allen highlighted the propensity of urban blacks to stay up late at night and ‘frolic’ in the streets.  Their attendance at picnics, dance halls, and theaters deprived them of the rest and sleep needed to revitalize their energy in order to engage in gainful work and seduced them into ‘licentious debaucheries of the most disgusting character’” (Hunter 191).  Doctors also claimed that TB was not present in the African race before 1865, a very false allegation.  Tuberculosis indeed infected African slaves; it was simply labeled differently, called “Negro Consumption”, “Negro Poisoning,” and “ Struma Africana.”  Black physician, Rebecca Cole questions the diagnosis of TB in black patients, believing it was an easy out for white doctors unsympathetic to black ailments, 

“Hosts of the poor are attended by young, inexperienced white physicians.  They have inherited the traits of their elders, and let a black patient cough, they immediately have visions of tuberculosis.  Let him die, and though in the case there may be good reason for a difference of opinion, he writes, tuberculosis, and heaves a great sigh of relief that one more source of contagion is removed” (Hunter 193).  

The fear of a “black disease” infecting the white population works nicely to frame the larger anxiety of blacks becoming a part of American society and “Africanizing” the land of WASPs.

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            After tuberculosis was labeled a black disease, white upper class Americans took no time in blaming “the help” for rapidly spreading the bacteria.  At the heart of the scandal were black washerwomen, although they were not at fault.  Hunter describes the public health movement to enact sanitation standards for washerwomen, something that was rooted in racism.  These white officials believed that those with African blood were inherently dirty and in possession of bad blood.  Dr. George Brown was at the head of the sanitation movement and displayed his uneducated theories regarding race and disease, “He related instances of ‘how immoral servants handle and fondle your children during the day and frequent the lowest dives at night’” (Hunter 210).  Brown campaigned to regulate washerwomen and led to the labeling of TB as a “Negro servants’ disease,” but his actions had a bigger impact than simply control of cleanliness.  Due to the move of blacks from live-in to day laborers, whites became concerned that without their supervision blacks were disregarding their own health. The outbreak of tuberculosis and its spread being blamed on blacks sets the stage for continued misinformation regarding health care in the African American community.

 

Tuskegee Syphilis Study (1932-1972)

            Starting in 1932, the United States Public Health Service began studying black men in Macon County infected with syphilis. The study can be broken into three phases, none more moral than the next and all in direct violation of post WWII Nuremberg Trial results declaring testing on humans unethical.  The first phase sought 400 men, over the age of 25, who had been infected for five years or more to be studied for six to eight months.  These men were not told they had syphilis nor did they receive proper medical treatment, they continued to suffer from the deadly venereal disease.  The outcome of the disease could be as severe as death, but often included attacks on the cardiovascular and neurological systems leading to mental illness, blindness and deafness, as well as bloody ulcers near the joints.  Doctors decided a few months was not long enough and instead decided to study these men for 5-10 years, leading to phase two of the study. A control group of uninfected men was established and researchers began conducting autopsies on both infected and healthy men.  This continued into the 1960s when ethical questions began to arise in the third phase of the study, brought up by Public Health Service employee, Peter Buxtun.  He wrote a letter to the Public Health Service officials in 1968, receiving no response,

“I am impelled to ask: 1) was this study initiated to obtain physical examinations and autopsy reports on the syphilitic damage which these men were being allowed to endure? 2) Have any of these men been fully treated? 3) Have any of these men been told the nature of this study? 4) Is this study still underway? In other words are untreated syphilitics still being followed for autopsy? (Gray 76)”

The lawyer representing the men of Tuskegee calls Buxton a helpful “whistleblower” and believes without him the study would have gone on for years. It was not until 1972 that the case was made public in the early 1990s that the names of victims were released.

            The Tuskegee Study employed a black nurse, Eunice Rivers, who is interviewed for a 1953 Public Health Records follow-up on the long-term research study.  The interviewer reports,

Image“One cannot work with a group of people over a long period of time without becoming attached to them…The ties are stronger than simply a patient and nurse.  There is feeling of complete confidence in what the nurse advises…Realizing that they do depend upon her and giver her their trust, she has to keep an open mind                             and must be careful always not to criticize, but to help in the most ethical way to see that they get the best care” (Rivers).

This passage seems odd, considering the nature of the study.  How can Rivers consider any care she gave to these men ethical when she was aware of their deadly disease? 

            Syphilis is sexually transmitted and without proper care these men would have unknowingly infected their sexual partners. Doctors validated their ethics by claiming the men were in the latent or non-transmittable stages, thus protecting their partners and offspring from the deadly disease; this is false.  Records blacked out the names of wives but 62 records remain that show only 28 of the 62 women received treatment for syphilis. These women may have undergone treatment and been cured, but if they continued to have sex with their infected partners they would still be at risk for transmission. Syphilis can also be transmitted to fetuses by the mothers and often leads to birth defects such as, deafness, blindness, and other mental handicaps (Reverby 129-132).  The withholding of medical care to over 400 black men profoundly impacted an entire community and was absolutely preventable. The fact that these men were all African American and the study was conducted by white doctors suggests that Jim Crow America was a hostile place for blacks to inhabit.

President Clinton’s apology for the unethical treatment of the men of the Tuskegee Syphilis Study

http://youtu.be/7hS53PxaCYU                      

Sources:

Eunice Rivers et al., “Twenty Years of Followup Experience in a Long-Range Medical Study,” Public Health Reports 68 (April 1953): 391-395

Gray, Fred D. The Tuskegee Syphilis Study: The Real Story and Beyond. Montgomery, Alabama: Black Belt Press, 1998.

Hunter, Tera W. To’ Joy my Freedom: Southern Black Women’s Lives and Labors after the Civil War. Cambridge, Massachusetts: Harvard University Press. 1997.

Reverby, Susan M. Examining Tuskegee: The Infamous Syphilis Study and its Legacy. Chapel Hill: The University of North Carolina Press, 2009.