The Sankofa Paradox: Why Black Women Know the HIV Epidemic Ends With “WE”

Sankofa is an aphorism from the Akan people of Ghana. Derived from the words San (return), Ko (go), and Fa (look, seek, and take), the word and its symbol translate as “It is not taboo to fetch what is at risk of being left behind.” The Sankofa symbol is a mythical bird shown with its feet and body facing forward, its head turned backward, and its beak holding an egg in place on its back. The Akan believe that the past serves as a guide for the future, and that it is the wisdom of the past that ensures a strong future. Many interpretations suggest that the egg is protected as it represents those who are not yet born, and it holds the connection between the past and the present. The Akan also believe that there must be movement and new learning as time passes.¹

As the HIV community takes this moment to look back on the 40-year history of the HIV epidemic, like the Akan people, we must remember and bring forward the knowledge of the past four decades of the US and global responses to the HIV epidemic. Indeed, we must look even further beyond these years to learn from a longer history of how societies respond to pandemics that lay bare the inequities and injustices that precede current public health crises. As we proceed with great efforts to end HIV as an epidemic, we must also incorporate what we have learned from a long history of systemic racism, sexism, colonialism, imperialism, and enslavement. One of the biggest HIV history lessons is that women,² especially women and girls who are Black or of African descent, have been disproportionately affected by and engaged in the HIV epidemic since the very beginning. Yet, up to this very moment, we have been in a constant fight for inclusion and for our places at the tables of design, decision, and distribution of life-saving knowledge and resources.

I call this lesson the Sankofa Paradox of ending the HIV epidemic. Without the full spectrum of inclusion and engagement of the lived experiences of women, girls, femmes, and trans–nonbinary individuals who were assigned female at birth, there will be no end to the HIV epidemic. Nearly every time the needs and contributions of Black and African women have been left out or left behind, it has slowed progress at reducing overall incidence of new HIV infections, increasing viral suppression, and facilitating the uptake of new technologies and interventions such as treatment as prevention, preexposure prophylaxis, postexposure prophylaxis, and the discovery of a vaccine and a cure for HIV. By default, excluding us has reinforced the unacceptable inequalities that exist for priority and key populations, including women and girls, sex workers, LGBTQIA+ (lesbian, gay, bisexual, transgender, queer or questioning, intersex, asexual, plus) people, incarcerated individuals, and people who inject drugs.

Since its founding in 1989, SisterLove has been a consistent advocate and voice for the inclusion of women in every aspect and every level of the HIV response. Despite the reality that most women who were diagnosed with AIDS at that time were infected through injection drug use, they received this news when they were pregnant, after having their babies, terminating pregnancies, or seeking permanent contraception through tubal ligations, and AIDS and HIV were not treated or integrated as issues of sexual and reproductive health or rights.³ We have been fighting since the days when we organized, mobilized, and “ACTed UP” for the inclusion of women’s opportunistic infections in the Centers for Disease Control and Prevention’s Clinical Guidelines for AIDS Diagnosis, Treatment and Care—a four-year campaign from 1990 to 1993 that resulted in the recognition of thousands of women who were experiencing unique conditions associated with their bodies and gender in relation to HIV/AIDS.⁴

Considering that women have always been at least half of the global HIV pandemic, it is still painful to recall how we have had to hold various global entities—which were responsible for defining and monitoring women’s sexual and reproductive health, rights, and justice (SRHRJ)—accountable for failing to significantly embrace HIV/AIDS as core issues. In the 1994 International Conference on Population and Development’s Program of Action, HIV and AIDS were barely mentioned. The 1995 Beijing Platform of Action from the Fourth World Conference on Women addresses the human rights and dignity of women living with AIDS, but it fails to draw the connections and intersections of HIV as an issue for SRHRJ responses. It was not until 2016 that the United Nations explicitly expressed the intersectionality of HIV and SRHRJ in the Declaration of Commitment on HIV/AIDS, which was first enacted in 2001.⁵

When the United States finally produced a National HIV/AIDS Strategy in 2010, women’s coalitions had to fight for the inclusion of SRHRJ and intersectional issues such as gender-based violence and trauma-informed care into the five-year plan to reduce new HIV infections, treat and provide care for everyone living with HIV, and eliminate the social determinants and inequities that drive the epidemic. Also, with each new administration, women and girls around the globe are subject to the unilateral decision by the US president of whether funds for humanitarian and public health services will afford them access to full sexual and reproductive health care. We need legislation that removes the power of the US president to implement executive orders that detrimentally affect the SRHRJ of women and girls at home and abroad.

The fight to ensure that women, girls, femmes, and transgender people who were assigned female at birth are prioritized and included in every aspect of the US and global HIV response is key to ending the HIV epidemic. In the landmark documentary, “Nothing Without Us: The Women Who Will End AIDS,” when someone asked why they were filming her, reproductive justice activist Gina Marie Brown unapologetically stated, “Because I am one of the women who will end AIDS.” We agree with her, and we know that without women—especially women of African descent—around the world leading the way through the final years of the HIV epidemic, no one gets to the end until we all do.

Over the course of history, Black women have shown that when we organize to change things for ourselves, we change things for everyone. Recent and historical events have shaped this truth as the evidence—civil and voting rights, sexual harassment accountability, gender-based violence, housing and food justice, environmental justice, economic justice, human rights, racial and reproductive justice, science and technology, education equity, civic and political engagement, abolitionism, ending state violence against Black and Brown communities, and fighting concurrent pandemics. We live intersectional lives; therefore, we seek intersectional solutions. Yet it seems that with every change we effect, incremental and monumental, there are efforts to forget us, exclude us, leave us, overlook us, delegitimize us, exploit us, criminalize us, and even erase us, as if we did not matter or did not exist.

Despite this ongoing cycle of relegating us to the bottom of nearly every barrel, Black and African women still rise to the occasion and deliver on our promise because we do not do what we do for ourselves. We do it for “WE”—the people, the planet, and the progeny. This has remained true throughout the course of the domestic and global fight to end the HIV epidemic and AIDS. It remains as the essence of my core belief that when we end the HIV epidemic for Black and African women and girls in all our diversities, and in our communities, we end it for everyone. If only WE could all remember and learn from the lessons of our past, and the challenges in our present, and transform the movement as we look forward to our future without HIV and AIDS.

I know a young Black woman who was born living with HIV. She is 25 years old, vibrant, smart, sex-positive, in love, undetectable, and pregnant. She champions HIV prevention, treatment, care, and sexual and reproductive justice for herself and all her friends who are queer, gender diverse, and engaged in sexual activities. She will most surely have a baby who will be born free of HIV. This young woman and her community of peers are the egg on the symbolic bird’s back. Their collective future beholds the end of HIV. Together, WE are all the embodiment of Sankofa. We owe them the ability to remember and learn the lessons from the past 40 years of HIV. Looking back with our feet moving forward, we hold them safe on our backs, while WE all follow the women leading us through the end of HIV and AIDS, and to the beginning of a new era of sexual and reproductive well-being and justice for everyone.