In the United States and around the world, Black women living with HIV have been innovators and change-makers in the HIV community and intersecting movements since the earliest days of the pandemic.

 

Yet Black women’s contributions are regularly ignored or made invisible in the HIV field and in U.S. society in general, where leadership roles have historically been held by white men. This disregard is a symptom of the same cause driving HIV among Black women.

 

According to the Centers for Disease Control and Prevention, U.S. Black women are 10 times more likely to be diagnosed with HIV than their white counterparts, and between 44% and 62% of Black women of transgender experience (trans women) are estimated to be living with HIV.

 

Most health experts report that this health disparity is caused by structural determinants of health, including poverty, racism, gender inequality and ableism, caused by generations of white supremacist ideology among individuals and throughout society.

 

Due to these complex, intersecting biases, Black women living with HIV experience stigma in profound and multifaceted ways. Some may face exclusion from support networks and communities or experience layers of rejection, abandonment and neglect.

 

For many Black women living with HIV, these struggles may lead to internalized stigma, isolation or shame. Some may withdraw from social interactions. These combined effects often increase stress, anxiety and depression, affecting access to care, mental health and overall well-being. Stigmas, biases and stereotypes may ripple into every facet of their lives, following them into the health care, educational, justice, economic and political systems.

 

To be Black, a woman and living with HIV in a society that has historically hailed whiteness, maleness and wellness as the pinnacle of humanity is to be in a consistent quest to maintain personal power. Personal power involves having autonomy, confidence and the capacity to make decisions that shape one’s destiny.

 

Possessing personal power as a Black woman living with HIV means acting with purpose and direction despite the opposition. Miraculously, many Black women living with HIV continue to overcome generations of oppression while working to end HIV-related stigma, decrease HIV transmissions and bring awareness to vulnerable communities.

 

The redistribution of power necessary to improve the overall well-being of Black women living with and impacted by HIV will require the strategic, consistent and long-term effort of people from all walks of life. Like most struggles for power, those deemed as oppressed who are on the front lines take the charge to improve their own condition. HIV is no different.

 

Ultimately, to be successful, Black women living with and impacted by HIV must be at the forefront of efforts to end the HIV epidemic. Their lived experiences hold the wisdom necessary to confront the plethora of issues faced by millions in the United States.

 

This is what it means to center Black women living with HIV: to put people most likely to be pushed to society’s margins at the center of our work; to approach each endeavor from the perspective of the changes that need to be made, or barriers removed, for Black women living with HIV to thrive; and to listen to and follow the leadership of Black women living with HIV.

 

As the HIV community moves forward to end this epidemic, we must be cognizant of the work being done by the people and for the people and support these efforts. When Black women living with HIV are at the center of coalition--building and policy change efforts, the needle will move exponentially toward justice.