In the U.S., AIDS was first described in 1981 in five sexually active homosexual young men in Los Angeles and clusters of patients in other cities. HIV, a lentivirus that causes HIV infection and ultimately AIDS, was said to be the root of this new illness [5-7]. By late 1982, it was verified that AIDS was an infectious disease conveyed through body fluids, namely blood, semen, rectal, and vaginal fluids, and breast milk [8]. It was also projected that all infected persons would eventually become seriously ill with HIV-related disease and Azidothymide (AZT) was then the only drug licensed as an effective antiviral drug [6,9]. Without treatment, average survival time after the infection was estimated to be 9 to 11 years, depending on HIV subtypes [10]. It is worth noting that the disease had cycled through many names: Human T Cell Lymphotropic Virus (HTLV) type I, II, III [11]; Gay-related immune deficiency (GRID) [12] before the scientific community settled on AIDS in 1982 [9].

As the world was busy blaming White gay men for the disease, women, and children were being infected as it was then believed that AIDS was confined to White gay men, prostitutes, intravenous drug users, and hemophiliacs. Even though the morbidity and mortality statistics of the day did not reflect women’s and children’s patients, the number of afflicted women, children, hemophiliacs, and others were growing exponentially. The Centers for Disease Control and Prevention [CDC] (2016) [13] reports that women between the ages of 18 and 44 years is the fastest-growing group of people infected with HIV/AIDS today and that Black women have a 1 in 32 chance of acquiring HIV in their lifetime, compared to White women, who have only a 1 in 588 chance of HIV infection.12 In 1993/1994, when the world gained more insight into the spectrum of HIV-related illness, the redefinition of the disease incorporated conditions only found in women infected with HIV or suffering from AIDS [14].

The second definition of AIDS ushered in several subgroups and the epidemic gradually morphed into an epidemic of non-White people, women, and heterosexuals. Today, women account for 1 in 5 of new HIV infections in the U.S. Women of color, mostly Black women, are notably hard hit and represent most women living with the disease and women newly infected. AIDS is now the leading cause of death among Black women ages 25-34 and the epidemic is entirely feminized [13]. The isolation of the HIV virus [15], its presence in body fluids [16] the ensuing transmission through sex (Phillips, Zacharopoulos, Tan, & Pearce-Pratt, 1994), and the incidence of morbidity and mortality among African American women [17], made them realize that AIDS was also their illness and that they had to join in the fight and ultimately the eradication of this new affliction. This article strives to inspire women of all walks of life to acquaint themselves with what their forerunners had achieved in this regard and to incite and motivate them to do more in the fight against HIV/AIDS.

The narrative inquiry (or narrative analysis) method was our method of choice. Narrative inquiry is a way of understanding and inquiring into an experience through “a collaboration between researcher and participants, over time, in a place or series of places, and social interaction with milieus” [18]. Based on this definition and following the steps suggested by [19] the writing of this article began with a conversation with Anita, one of the professors who serve on the state HIV Community Planning Group (CPG) when she returned from a workshop where they discussed the funding of HIV/AIDS activities in the State. When asked about the CPG achievements so far, Anita retorted that the CPG had funded several communitybased organizations and that women, especially African American women, had been at the forefront of the fight against the spread of HIV/AIDS in our communities. She offered to speak to the faculty about African American women’s contribution to the fight against HIV. Her presentation consisted of a summarization of the many books she had read about HIV/AIDS and an explanation of how black women had worked and are still working to change their situations on the ground. Soon many more women (Julie, Clara, Ms. Mwenya…) joined the conversations and the presentations grew in quality and contents.

This is how we gathered, analyzed, and represented women’s stories as captured from their cultural standpoints. From their presentations, we deducted all the themes, insights, and understandings argued in the article. This article is a reconstruction of women’s experiences in relationship both to the other and to a social milieu [20]. Through the meticulous use of the Narrative Inquiry, we also learned that Black women’s contributions to the fight against HIV/AIDS are concurrently overflowing, overlapping, and yet specifically targeted.

To corroborate black women’s resolve to fight and even eradicate the spread of HIV in our midst, this article presents and discusses its findings in following areas of influence: Black women as patients, Black women as therapists, Black women as informal caregivers, Black women ministers and HIV/AIDS, Black women as physicians in infectious diseases in hospitals, and Black women as community popular opinion leaders. None of these features is enough by itself, but in conjunction with others, they describe the Black women’s contribution to the fight.

Black women as patients

When the AIDS epidemic was eventually accepted as a universal phenomenon, it had relentlessly and indiscriminately spread to men and women of all races/ ethnicities, abilities, ages, sexual orientations, religions, and social classes worldwide. Black women realized that they were disproportionally affected by the disease and that they needed to act fast to remedy the situation. Hence, their first contribution to the fight against HIV/ AIDS was to avail themselves as patients and as exhibits to enhance the garnering of scientific knowledge as extraordinarily little was known about the disease. As patients, Black women helped in the search for a cure to assuage their physical and psychological pains including stigma, mental stress, and a host of psychiatric challenges. It is now common knowledge that the HIV/ AIDS disease is associated with stigma, mental stress, and psychiatric morbidity [21] and that the existence of HIV-related stigma compromises public health efforts toward prevention, treatment, and provision of the support needed for effective management of the disease [22]. Thirty-five years after the onset of the epidemic, the HIV-related stigma still exists [23] and evidence suggests that it is rampant among African Americans compared to White people [24]

Besides the stigma and physical afflictions, Black women transcended the medical distrust that runs from the Tuskegee Syphilis Project to the current issues of health disparities in the U.S. [25,26]. Blacks’ fears of exploitation by the medical establishment date back to the antebellum period when slaves were used as subjects for dissection and medical trialing [27]. But, when the epidemic needed cases from which to derive knowledge, the infected Black women offered themselves to advance science and to save the millions that were still untouched. Posthumously, Henrietta Lacks, an African American woman whose cancer cells are one of the most important cell lines in medical research, offered her cells to develop a potential vaccine against HIV/AIDS [28-30]. Her immortalized cell line which reproduces itself indefinitely under specific conditions continues to be a source of invaluable medical data to the present day. While it was rumored that the Black women’s coming-out was for their benefit, it should also be admitted that their resilience profited the world more than it did to themselves. People living with HIV (PWHA) from the developing nations underscore this point [31].

Black women as therapists

From the redefinition of AIDS, Black women explicitly learned that the social structure of HIV risk and transmission was also a gendered experience added to their vulnerability to HIV. The female anatomy, oppressive gender norms, violence against women, limited health literacy, and limited negotiation skills all negatively impact girls and women and increase their risk for HIV infection. The link between HIV risk and transmission and race [32] and class oppression [33] is self-evident. Hence, to protect women against HIV infection and/or reinfection, women ought to be given a variety of options from which to choose a prevention solution that best suited their needs and risk profile. HIV research grounded in women’s empowerment theory that recognizes a woman’s ability and willingness to protect herself from HIV stems from her sense of empowerment acquired through daily exchanges and experiences in her social contexts [34].

Hence, Black women launched non-governmental organizations or joined hands with existent agencies to create behavioral interventions to inspire women to practice safer sex by improving expertise and beliefs and by building skills to practice safer behaviors [35,36].They joined the CDC to develop, implement, and assess the Diffusion of Effective Behavioral Interventions (DEBIs), evidence-based, group and community–level HIV/STD prevention interventions, for health departments and community–based organizations nationwide [37].

Conceived and designed in conjunction with women, DEBIs include among others the following programs (Table 1).

Table 1: Debis-conceived and designed in conjunction with women.

Behavioral scientists, including Black women among them, have made sizable strides in developing HIV evidence-based prevention interventions to promote behavior change among African American women, even though, maintenance of these health behaviors remains a challenge [44].

These DEBIs have been executed and evaluated in social settings such as schools, clinical venues, prisons, and substance abuse treatment facilities and have been proven effective through research that showed positive behavioral (e.g., condom use; cut in number of partners) and/or health results (e.g., cut in the number of new STD infections). Black women’s contributions did not stop here, but, as cell tentacles, they moved to other areas where they were needed.

Black women as community popular opinion leaders

Another area where the women contributed to the fight against HIV was in their role as community popular opinion leaders. Popular Opinion Leader is a DEBI that was originally developed by Kelly and his colleagues to help in the fight against the spread of HIV [45]. A derivative of this program is the Community Popular Opinion Leader (C-POL). Tapping into community strengths, altruism, and people’s desire to do something to help fight against HIV, the C-POL intervention uses social networks and opinion leaders of social networks to fuel prevention messages and behavior change at a population level [46,47]. Using the diffusion of innovation theory, it stresses community empowerment, seeks to increase safer-sex and other HIV-related norms among members of a well-defined target population as its theoretical base [46]. Several adaptations of the C-POL intervention have been utilized with African American Men having Sex with Men (MSM) [48], young Latino migrant MSM [49], male sex workers, and women [50]. As a result, a C-POL promotes risk reduction supportive opinions and practices to their friends and associates within their shared social networks [17,51).

Equipped with all the needed information, female C-POLs first provided entrée and legitimation to external change agents, then acted as conveyor-belt from their communities back to agencies executing programs, and finally acted as role models for behavior change within the community [52]. Utilizing the methodology described above, Black women, as C-POLs, yielded the following results: a) Decrease in unprotected intercourse and increase in condom use in MSM and minority women [53], b) Decrease in number of sex partners (MSM), c) Increase in communication with partners in minority women [54], d) Decrease in paid, unprotected anal intercourse (male sex workers), and e) HIV/STD risk reduction [55]. Needless to add that these women acted and still act as perfect managers. In other areas of development, the evidence reveals that female leaders typically show more compassion and empathy, and a more open and inclusive negotiation style. Having spent half of his career in family planning and social development my manager can attest that placing women in leadership positions on development programming assures that resources are allocated fairly and effectively (J. Munkanta, personal communication, December 26, 2017).

Dr. Morris (2016) study on the impact of women in public service indicates that women have had a clear impact on policy, programs, and operations in natural resources, human resources, and international relations, and that current global problems require leaders that have diverse skill sets and innovation that can only come from diverse ideas and players. Having women in leadership roles is breaking down cultural and structural barriers, thereby improving leadership around the world and showing everyone what women can achieve. Besides all the information these women needed, they were also determined to protect the uninfected in the community, to stop the process of reinfection in those already infected, and to work towards the protection of future generations of Black people [56].

Black women as informal caregivers

Now that the prevention side was partially assured, the women faced the duty of caring for the infected and the afflicted. Worldwide, caregiving is becoming increasingly exacerbated than before. Caregivers are faced not only with the aging and their geriatric conditions, but also with all the people living with chronic illnesses, such as AIDS, cancers, and others of the like. In their study about expectation about future long-term services, Henning- Smith and Shippee (2015) [57] found that most Americans undervalue their future need for long-term services and supports (LTSS) and do not fully plan for their old age whereas Johnson, Toohey, and Wiener (2007) [58] projected that the number of Americans needing LTSS may reach 40 million by 2040. On the side of the AIDS epidemic, it is estimated that there were 39, 782 new cases of HIV infection in 2016, of which 41% were African American men and women (CDC, 2017). If the onset of powerful antiretroviral therapy has transformed HIV from a fatal infection to a manageable chronic disease for those with access to therapy, then, the number of those needing care will continue to explode, and more so among Blacks (CDC, 2016; 59].

Faced with this explosion of people needing care, Black women revealed their other side as caregivers for themselves, the family, and society. Caregiving is usually performed informally or professionally. A caregiver is defined as someone who provides care and support for spouses, children, parents, and friends who need support because of age, disabling medical conditions, chronic injury, and long-term disability. An informal caregiver provides free emotional, financial, nursing, and social supports, homemaking, and other services on a daily or intermittent basis for a needy person whereas a professional caregiver is hired to provide the same. Caregivers, formal or informal, pass on their patience, guidance, humor, and resources to people who are often living with fear or pain [60]. For their contribution to the fight, Black women functioned and still function in both capacities.

As informal caregivers, Black women volunteered their time, without pay, to help with the care needs of a loved one. They assisted the person with tasks such as preparing and eating food, taking medicine, bathing, and dressing. Activities such as these are not only stressing, but also have the potential of affecting caregivers in the provision of their services [61]. Because of the advanced antiretroviral treatments, AIDS patients now live longer and the demands on the caregivers are worsening day after day. Both formal and informal caregivers go through the same plight.

It is worth noting that, while Black women provided care to the infected, some became infected in the process and their healthcare needs were not being met because of poverty and lack of access to the medical establishment. Symptoms of poor physical health were visibly present among AIDS caregivers and pointedly linked to carerelated demands and stressors. Caring for these women created challenges related to the context of their lives, the ambiance created by the presence of HIV, and their psychological status. These women faced several risk factors as well as lack of empowerment and social support (Meyer, Springer, & Altice, 2012), lack of access to women-specific HIV care [62, & Gilbert, 2009), and their caregivers’ challenges. Confronted with their own sickness and that of their loved ones, these caregivers often placed their health care needs behind the needs of spouses, children, and grandchildren [63] and felt that they could not show any signs of weakness or needing help [64,65].

It is also significant to note that countless Black women ordinarily assume several roles including those of family health manager, breadwinner, advocate, and faith/ spirituality devotee. Hence, it is not shocking that, with the explosion of single-parent households, women have gradually assumed the role of the family “breadwinner” and informal caregiver in that they execute unpaid tasks to satisfy the health needs of family members, and the social role of advocate by sharing their stories and encouraging other women to practice “safe” behaviors and improved self-management deeds. Living with AIDS is difficult, and managing the many daily tasks required to live well with AIDS is more challenging for most women, even though this is accomplished daily by millions of women around the world [66].

Black women in clinical trials

From being patients and informal caregivers, African American women also turned to clinical trials as another area where they could contribute profitably. Clinical trials are an area where Blacks and other minority groups were historically and excluded until the National Institutes of Health required the inclusion of women and minorities in studies for any funding [67]. To defend their exclusion of minority groups, several scientists cited “the difficulty of recruitment and retention, a general belief that racial populations are essentially monolithic, without significant differences, and the desire and need to focus on optimizing internal validity” [68], and to justify their rejection of trials, Blacks alluded to past medical experimentation, their mistrust in the medical establishment, and their resistance to participate in research activities for their lack of interest in clinical trials [69,31] They also revealed a lack of awareness about trials, low socioeconomic status, poor communication skills, a lack of disease education [70] and a fear of being used as guinea pigs [71] as barriers to their participation in clinical trials. These women understood that adequate minority enrollment in clinical trials was vital if differential effects among diverse groups were to be assessed and for the results to be generalized [72]. As a result, they gladly enrolled in clinical and medical trials.

Drawing on their experience during slavery when they were selectively and partially attended to by the medical establishment [73] and from the time of segregation when they were mostly attended to by their physicians and in their own communities [27], African American women roused their “sistas” and their own communities to seek medical care and to participate in clinical trials as the future of their children and communities in general depended on this act of faith [72]. They also understood quite well that, to run successful research and treatment of AIDS, African Americans and researchers ought to work together with a spirit of openness and collaboration and to understand that cultural competency, health literacy, establishing trust and building relationships were all salient factors that ought to be taken into consideration when recruiting and working with minority populations [74]. Hence, these women played and are still playing the role of mediator and advocate between their communities and the medical establishment.

Black women ministers and HIV/AIDS

At the onset of the AIDS epidemic, the Black Church, historically a place of social, political, cultural, and religious, activities was still at war against homosexuality and noticed that its pastors, choir directors, and male congregants were dying from rare forms of cancers and pneumonia which later became known as AIDSrelated illnesses. Some ministers were adding humbling comments in their sermons to express disdain toward black gay men, some others were openly upholding gay parishioners [75], while the remainder remained utterly silent. The black gay men living with AIDS felt alienated from Black religious gatherings. They experienced various homophobic and AIDS-phobic messages that raised their feelings of castigation, diminished their religious identity, and threatened the loss of salient cultural and historical resources unique to Black congregations [76]. A palpable silence around homosexuality pervaded and still exists in several Black churches, even though there are today Black congregations that are socially and theologically liberal.

Even though Black gay men often struggled with feelings of disapproval from God and churches [77], spirituality always helped them maintain their formal connections to religious establishments [75] though they have now started to reinterpret church teachings in light of their sexualities [78]. Disenfranchised from their own mother body, the church, and shunned by the White gay community, African American gays and lesbians were striving to find a place of their own within Black churches, and in some cases, they were even abandoning the main church to create their place. The Black church was on the brink of disruption and its clergy caught between the decision to continue preaching against homosexuality or accepting and allowing it to come to the spiritual aid of those dying from the disease [79].

Black women promptly jumped into the fray to bring about the serenity that ought to portray the fight against the spread of HIV/AIDS. Cathy J. Cohen, Mary Pattillo- McCoy, Patricia Hill Collins, Kelly Brown Douglas, and Mindy Fullilove, all African American women, and religious scholars, joined hands to promote and guarantee a good understanding of the fight between the Black church, homosexuality, and men. Cathy Cohen who wrote The Boundaries of Blackness, the first full-scale exploration of the social, political, and cultural impact of AIDS on the African American community, bravely brings to light how the epidemic fractured, rather than united, the Black community. She traces how the disease separated Blacks along different fault lines and analyzes the resulting struggles and debates [81]. Kelly Brown Douglas, a priest in the Episcopal Church whose books include The Black Christ, Sexuality and the Black Church, and Black Bodies and the Black Church: A Blues Slant, echoed how vital it was and still is for Black churches and the public to understand and transcend their resistance to openly addressing complex, painful issues of sexuality and embrace healthier definitions of Black manhood [82]. There are many related stories to tell in support of women.

Today, thanks to Black women’s contributions, more African Americans churches are well-positioned to provide HIV education, screening, and support services, using church-appropriate, easy-to-deliver HIV tools that can be applied developmentally. In their examination of church capacity to develop and disseminate a religiously appropriate HIV tool kit with Black churches, Berkley- Patton and his colleagues (2013) reported that 96% of participants wanted to learn more about HIV and how to discuss it with their parishioners to bring about change in their specific communities. Most study representatives had skills in various research and community outreach ministries and had facilitated HIV/AIDS education prevention and adolescent sex education activities [83].

Black women’s spirituality

Besides their outward expression of spirituality and religion, Black women are inherently spiritual and committed to their religion through its different denominations [84]. Research holds that Blacks are more likely than Whites to pray privately, practice religious rituals, attend religious services, and believe that the Bible is the word of God [87]. Hence, the Bible, Prayer, and the church community are the resources religious Black women use to meet daily needs [83]. Religion is seen as influencing how individuals appraise situations, participate in activities, and develop goals for themselves. Religious individuals have reported using a wide variety of religious coping methods, such as seeking support from a clergy or church members, seeking spiritual support, using spirituality and religion to support those in need either physically and spiritually [89]. Historically, both religion and spirituality for Black women are centered in slavery with its attempt to destroy African culture, its sexual abuse of Black women, and its separation of families [90]. Enslaved women transcended and altered their experiences through a spirituality that offered hope in personal and community liaisons and embraced a religious experience that affirmed the presence of God in their struggle [91]. God is seen as a deliverer from unjust suffering and the comforter in times of trouble [92]. According to Greer and his colleagues, women viewed spirituality as an intimate relationship with transcendent forces such as God and humans that inspired faith, trust, adherence, and they relied on these forces for all things about life. They noted that religion was an external act that prepared individuals for the internal experience of spirituality [93].

Religion and spirituality are important aspects of African American life and have been described as the stronghold for many African Americans. Women’s spirituality pointedly influences what they think and believe and is associated with positive health outcomes from an improved perception of health status to the ability to withstand the diagnosis of HIV. Spirituality has also been implicated in helping African Americans overcome barriers to HIV diagnosis and adhering to prescribed medications [94]. Numerous studies, conducted with different populations, indicate that religious individuals (spirituality and religion) evidence a range of physical and mental health benefits [95]. Faith and spirituality are sources of optimism and motivation, and our participants used them during their services to the infected and afflicted and in the community. It is our humble belief that African American women used spirituality to heal themselves during their struggles around HIV and to heal those that were either infected or affected in the community.

Black women as a gift to humanity

Another African American woman contribution is located at the intersection of the Africentric worldview, Spirituality, and Feminism (Womanism). The interplay between these three factors continues to inspire African American women in their fight against HIV/AIDS. The Africentric worldview is broadly defined as “the worldview of people of African descent” and consists of the values, beliefs, and behavior of people of African heritage (Belgrave & Allison, 2006, p. 28). These values, beliefs, and behaviors operate as a blueprint for people of African descent to live by, as a means for them to make sense of the world (Butler, 1992) and to adapt to life’s contexts.

Belgrave and Allison (2006) [96] identified the following features as the basis of the Africentric worldview: spirituality; collectivism; time orientation; orality; sensitivity to affect and emotional cues; verve and rhythm; and balance and harmony with nature. These facets are said to have sustained enslaved Africans who held onto them as a means of survival in America and to have been passed down through the generations [97] research does not determine whether an Africentric worldview is innately determined [98] as well as whether it is exclusive to persons of African descent [99], it is agreed that it can be found to some extent among most people of African descent [96]. Whether acquired through nature or nurture, the Afrocentric worldview is deeply anchored in African Americans and inspires them to value unity, cooperative effort, mutual responsibility, empathy, and reconciliation [100]. Otherwise, how can we justify their readiness to bring about reconciliation and harmony in the church and to serve as informal caregivers to so many AIDS patients?

The second face of the intersection is the spirituality that surrounds the African American women. The blend of the Africentric worldview on one side and spirituality/religion on the other makes the Black woman the priest who is constantly in contact with her inner self and perpetually in the presence of God interceding for her people and the sick. As such, when the African American women took up the caregiving of AIDS patients, their dedication was such that, in the absence of medication that could prolong their lives, their patients easily accepted to move in the presence of God. Both spirituality and religion focus on the sacred, beliefs about the sacred, the effects of these beliefs on behavior, and practices used to attain a sense of the sacred.

The last facet of this intersection could be seen in her unique devotion to humanity as a woman and as the guardian of traditions. That devotion could have been labeled in many ways, but the African American women chose and cherished the term “Womanism,” a viewpoint concerned with the “right” relationships between Black men and women and an emphasis on family and community. Womanism, a Black feminist standpoint, provides a background through which to explore and savor African American women’s spirituality. Karen Baker-Fletcher, a renowned African American Professor of Systematic Theology, celebrates Womanism with Black women’s redefinition of their womanhood in contrast to the belittling perpetuated during slavery and segregation. This emphasis on the notion that God identifies with and liberates the oppressed is a central theme of the womanist religious perspective. In Black churches, women relive the power of the Spirit as a healing resource supplying meaning during trials and tribulations (Baker-Fletcher, 1998). Women become therapists to each other, and the church assumes the role of “an asylum of therapeutic assistance,” as well as a place of shelter [101].

Our study has several limitations. First, we selected Narrative Inquiry, a method that is broadly subjective in many ways. We chose and used a series of journal articles as the units of analysis to research and understand how African American women contributed and are still contributing to the fight against the spread of HIV/AIDS in our communities. Secondly, many topics could have been used in our findings, but we subjectively insisted on the few ones we thought could tell our story. While we agree that our study was not after ‘generalizability,’ we can assert its ‘transferability’ to similar situations in the world.

The purpose of this article was to show how the African American women took part and are still participating in the fight and eradication of the HIV/AIDS epidemic from our areas. Because many African American women were silently infected when the world thought that the epidemic was restricted to White gay people, with the redefinition of HIV/AIDS, Black women understood that the epidemic was also theirs and that they needed to become engaged in all its different facets. As patients, they offered themselves as guinea pigs to advance the acquisition of knowledge concerning the HIV/AIDS epidemic and transcended the medical distrust that runs from the Tuskegee Syphilis Project to the current issues of health disparities in the U.S. to access medical services wherever they could. They joined existing organizations to develop gender tailored and theoretically derived interventions to protect those who were still uninfected. As ministers in the black Churches and as academicians, the African American women calmed the tempest that was ravaging the Church, extended a welcoming hand to those planning to leave the church because of their sexuality, and as informal caregivers, they brought healing to the infected and affected. Finally, we could not have made it so far without the contribution of the Black women, our unsung heroes.