The state of Black maternal health in the United States is dire—and has been for centuries. Despite incredible gains in civil rights, Black women are still three times more likely to die from a pregnancy-related cause than white women. In some places, like New York City, this number is as high as nine times.
With 80% of pregnancy-related deaths deemed preventable, Black maternal health in the United States is swiftly becoming the next great public health emergency. Many efforts are underway to address the challenges Black women and birthing people face in pregnancy and labor. However, they have not yet come to fruition, signaling that there is a need for elevated interventions.
While not a classic reference to draw from within maternal health spaces, the advocacy and activism around HIV/AIDS, particularly as they were practiced in the 1980s and 1990s, offer lessons that advocates, policymakers, health care practitioners, and patients can draw from as we work to reduce Black death during and after pregnancy.
Center Lived Experience
HIV is one of the preeminent medical conditions that broke the tradition of “leaving it to the experts” for improvements in HIV management and care delivery. Instead of relying solely on researchers, policymakers, and HIV practitioners driving initiatives like protective legislation, accessible medications, and patient-centered care, it was often those living with or affected by HIV/AIDS and their communities who brought about necessary changes. Many of us recall the heroic stories of activists blocking the FDA doors en masse when lifesaving medications were delayed or marching to bring awareness to their suffering when politicians refused to act quickly.
Similarly, maternal health advocacy can elevate its effectiveness by centering people whose lives are directly and indirectly impacted by Black maternal death and morbidity, including birthing people themselves, their partners, and their families and loved ones.
There are many clear benefits that come from listening to and hearing directly from people who are impacted by these issues. Doing so promotes a constant sense of urgency around addressing this public health crisis. It also helps to eliminate the pervasive practice in health care delivery of creating solutions that may not accurately reflect the lived reality of those who would then use those health care models. In other words, “Nothing for us without us.”
Centering lived experience is particularly important in maternal health as the factors driving death and morbidity include cardiovascular events, hemorrhaging, and substance use disorder, to name a few. And birthing people facing these different challenges are not a single unit or data point, making their individualized input vital.
Maternal and reproductive health activists and organizers such as the Black Mamas Matter Alliance, SisterSong, The Afiya Center, and many others are not shy about stating what they need to help address this problem. The challenge is whether health care and public health leaders and policymakers will make the space to invite these experts to the design table as solutions are being rolled out to stop Black death in pregnancy.
Advance Policy Changes to Address Root Causes
Like HIV, the crisis in maternal health is a reflection of structural and systemic inequities. HIV/AIDS advocates like Mario Cooper, Kiyoshi Kuromiya, Larry Kramer, Elizabeth Taylor, and Ryan White invested efforts to change legislation, particularly legislation that addressed discrimination against those living with HIV/AIDS. Indeed, the most comprehensive HIV law providing lifesaving care for people living with HIV/AIDS with low incomes resulted from the efforts of Ryan White’s supporters to address stigma and access to adequate treatment.
Poor maternal health outcomes are similarly driven by poverty, racism, and classism. For example, a study conducted by the National Bureau of Economic Research found that within the U.S., Black women at the highest socioeconomic levels were still more likely to die in childbirth than the poorest white women. The problem is not just access to safe birthing centers, insurance, or education—the drivers of Black maternal health and morbidity run much deeper.
Just as legislation helped address the root causes of inequities in HIV care, given this ongoing issue, legislation is also essential to overcome the current public health crisis for Black birthing people. There have been a number of attempts in the past few years. Originally introduced in 2021, the Black Maternal Health Momnibus Act was reintroduced in 2023 to comprehensively address the root causes of birthing deaths through 13 individual bills covering increased funding for social determinants of health research, supporting those with mental health conditions, and diversifying the perinatal workforce.
Though the Biden-Harris administration has widely supported addressing the maternal mortality crisis, it will require bipartisan commitment and constant community advocacy and pressure―including testimony from public health experts―to enact legislation that saves Black birthing people.
Make It About All of Us
In addition to learning from some of the positive lessons created by HIV advocacy, maternal health can also learn from the HIV movement’s challenges. One of the biggest challenges to HIV advocacy was the early public portrayal of HIV/AIDS as a “gay, white male” disease.
Believing that the virus only affected a marginalized and already highly stigmatized group disincentivized the public from supporting and offering resources to help those living with HIV/AIDS. Instead, there were national efforts to criminalize HIV transmission, and 34 states still have HIV criminalization laws as of 2023.
This “them, not us” framing was and remains detrimental, leading to stigma and lack of awareness of risk, and is another reason why HIV rates remain high for Black heterosexual women, who may perceive themselves as unlikely to acquire the virus. Today, these perceptions contribute to low pre-exposure prophylaxis (PrEP) uptake among women of color, who may not be offered or informed about PrEP by their doctors or may not consider themselves to need it. Despite its best efforts, HIV advocacy still suffers from pigeonholing, which makes it easy for some to ignore this epidemic.
Black maternal health can and must learn from this lesson in many ways. First, the Black maternal health crisis is a canary in the coal mine for health care: The same structural and systemic factors driving death and morbidity—such as lack of access to safe birthing centers and discrimination in health care settings—impact other areas of health care for Black people in this country and for other marginalized groups, such as those who identify as LGBTQ.
Black maternal health is also an “all of us” problem because, as Black women and birthing people suffer and die in childbirth, they leave behind devastated families and communities whose futures are never the same. The lost potential, generational trauma, and economic impact have repercussions outside of those whose loved ones have died.
We shouldn’t have to speak about the financial loss that accompanies morbidity. The fact that Black women are dying at alarming rates should be reason enough. But this issue goes beyond “should or shouldn’t,” and we will do anything to raise the alarm.
Our Black maternal health crisis cannot be solved without all of us—Black and non-Black, birthing and non-birthing—being fully involved and invested. Using the lessons from HIV, such as drawing from those with lived experience, centering policy changes, and ensuring absolute inclusion, will make significant improvements in maternal health so that Black women and birthing people can thrive.