Forty-five years ago, the Center for Disease Control published its report on the first AIDS case in the United States that would become known as the beginning of the AIDS epidemic. Today, as the global HIV/AIDS pandemic enters its fifth decade, scientific advances have transformed what was once widely understood as a death sentence into a manageable chronic condition for many people with access to treatment and quality care. Medical breakthroughs such as combination antiretroviral therapy (ART), Pre-exposure prophylaxis (PrEP), Post-exposure prophylaxis (PEP), rapid HIV testing, and mother-to-child transmission prevention have transformed HIV treatment over the past four decades, so much so that most people believe that the HIV epidemic is over.
As we celebrate four decades of scientific breakthroughs in HIV we are simultaneously watching governments retreat from the public health commitments needed to ensure those breakthroughs reach everyone. The United States has withdrawn from the World Health Organization, HIV funding faces deep uncertainty, contributions to the Global Fund declined, and public health infrastructure continues to shrink.
One message becomes increasingly clear: governments are retreating from the very systems that sustain global health. Yet these decisions are unfolding at a moment when HIV-related inequities remain deeply entrenched. My forthcoming book, Ill Erotics: Black Jamaican Women and Self-Making in Times of HIV/AIDS, argues that for many Black women, the HIV/AIDS pandemic never ended. It simply became unevenly distributed and less visible. Drawing on nearly a decade of research, Ill Erotics invites us to ask a different question: Who continues to build care when institutions fail?
The Dangerous Myth that HIV and AIDS are “Over”
In 2024, an estimated 1.3 million people acquired HIV and roughly 630,000 people died from AIDS-related illnesses worldwide. In that same year, the United States recorded 38,793 new HIV diagnoses and 4,296 HIV-related deaths, while more than 1.15 million people were living with diagnosed HIV. HIV infection and treatment has always reflected the unequal distribution of opportunity, resources, and care—not biological differences among populations.
Although HIV affects people of every race, gender, sexuality, and geography, the benefits of four decades of scientific progress have not been distributed equally. Racial and sexual minorities continue to bear a disproportionate share of the consequences of structural inequities that shape HIV, including disparate access to health, housing, financial opportunities and economic security. Today, men account for the majority of HIV diagnoses in the United States, particularly gay, bisexual, and other men who have sex with men. Yet among women, Black women have the highest diagnosis rate of any racial or ethnic group of women. Black women account for 52% of new HIV diagnoses among women in 2024 despite representing only 13% of the U.S. female population. Among U.S. transgender women, Black transgender women bear a profoundly unequal burden of HIV/AIDS with 62% living with HIV, compared with 35% of Hispanic/Latina transgender women and 17% of White transgender women.
Yet statistics alone obscure another story and one that is rarely centered in public memory.
Black women have not simply survived the HIV/AIDS pandemic. Rather, they have been among its most innovative public health leaders, important policy advocates, and leading architects of care throughout the pandemic. They organized support networks, navigated fragmented healthcare systems, challenged stigma, advocated for representation in clinical trials, and built community infrastructures of care that cared for the sick and dying while sustaining families long before medical practitioners and policymakers recognized their expertise. Yet their leadership remains largely absent from how we narrate the history and future of HIV/AIDS.
The Misunderstood HIV/AIDS Leadership Story from the U.S. to Jamaica
My forthcoming book, Ill Erotics, narrates this story. Black Jamaican women living with HIV have spent decades creating community-based systems of care that offer lessons not only for HIV, but for reproductive justice, public health, and democracy itself.
Organizations like EVE for Life in Kingston, Jamaica and SisterLove in Atlanta, Georgia have organized throughout the Americas to gather and distribute resources to address the disease, to create psychosocial support groups to care for newly diagnosed women and long-term survivors, and to expand access to high-level decision-making spaces. When policy makers and government leaders failed to expand access to care, these organizations challenged medical neglect, demanded scientific research, built community-based support systems, and pushed governments to recognize those most affected by the epidemic. Their advocacy and organizing led to expanded access and quality of care.
One striking example is Katrina Haslip, a formerly incarcerated Black Muslim woman living with HIV who was imprisoned at Bedford Hills Correctional Facility. Haslip developed peer education and care strategies for incarcerated women while simultaneously working with activists outside prison walls to expose how HIV policies systematically excluded women. Their advocacy helped pressure the Centers for Disease Control and Prevention to expand its AIDS surveillance definition in 1992 to include conditions experienced by women such as cervical cancer and pelvic inflammatory disease. This often-overlooked policy change enabled thousands of women to qualify for disability benefits, healthcare, and other critical social protections.
My own ethnographic research in Jamaica reveals similar forms of leadership. Black women living with HIV were not simply recipients of care. They were health educators, navigators, and architects of community support who were among a group of HIV educators and organizers who worked with EVE for Life. They served as mentees and mentors, performing community outreach while organizing transportation to medical appointments, sharing treatment information to help newly diagnosed women demystify HIV, providing childcare, addressing food insecurity, accessing referrals to health services, and processing the trauma of a stigmatizing illness. By creating spaces where women could live with dignity despite persistent stigma, they were able to access referrals to health services.
In both the United States and Jamaica, these women understood something policymakers too often overlook: medicine alone cannot sustain health. Communities do. And they do so in spaces with sustained and intentional support where women could live with dignity.
What Black Women’s HIV/AIDS Leadership Teaches Us
The greatest lesson of the HIV/AIDS pandemic is not what biomedicine accomplished, but what communities accomplished when medicine, policy, and governments fell short. As governments debate what to fund, what to cut, and which institutions deserve public investment, Black women living with HIV remind us that care is not charity. It is intentional infrastructure that requires sustainable investments.
One of the enduring lessons of the HIV/AIDS pandemic is that the health of nations is not measured by the policies countries enact, but by whether ordinary people demand that every community has an equal opportunity to live healthy, dignified lives. One of the greatest lessons of the HIV/AIDS pandemic may be this: governments cannot afford to treat public health as a series of temporary emergencies. How governments respond to prolonged health crises, whether through sustained investment or gradual neglect, predicts a future of how we keep people healthy long after headlines fade.
Today’s responses to HIV/AIDS require leadership across every sector including from government and philanthropy to business, healthcare, higher education, media, and civil society. Public health is a shared responsibility.
When we overlook the people who have spent decades building community infrastructure, we not only misunderstand the history of HIV, we also miss some of the most important lessons for the future of public health. Individuals and policymakers alike can learn the following lessons from Black women’s community-rooted infrastructures of care:
- Communities are experts that can provide valuable assets, knowledge, and tools to address complex issues.
- Policy should be built and designed with the people most impacted by its consequences.
- Care requires a dynamic infrastructure that includes building trust and rapport with communities, providing accessible health care, translating science and medical literacy, challenging HIV stigma and discrimination.
- Institutions and governments must invest long before crises unfold and continue funding past initial signs of success to ensure complete and lasting transformation. And public investments should strengthen, not replace community leadership.
- This expertise should be cited and elevated within medical, public health, and policy frameworks for holistic approaches to HIV/AIDS care, not as a replacement of sustained infrastructure.
