As members of the Advisory Committee on Infant and Maternal Mortality (ACIMM), charged to advise the Secretary of Health and Human Services (HHS) on how to improve birth outcomes, we spent two years examining issues contributing to the deplorable infant and maternal mortality rates in American Indian and Alaska Native (AI/AN) communities.
Before finalizing our recommendations, we dedicated our September 2022 meeting, held on the Tribal land of the Shakopee Mdewakanton Sioux Community, to hearing firsthand perspectives of AI/AN women.
Indigenous women came from across the country to share their experiences of pregnancy, birth, and caring for their babies. They spoke with tears in their eyes, anger in their voices, and sadness in their hearts, yet their spirits were filled with hope. Each situation was unique, but all experienced being disregarded, disrespected, disenfranchised, dismissed, and dehumanized.
Their personal stories shined light on how, at best, society has been ignoring them and their ancestors for years and, at worst, actively trying to eliminate them. They spoke of how racism is embedded in subtle and blatant efforts to erase them from society’s consciousness, ignoring data that show AI/AN mothers and infants dying at rates two to three times higher than whites.
For two days, Indigenous women spoke of how the unacknowledged history of genocide, land theft, Native boarding schools, and cultural annihilation continues to play out. They described how devaluing AI/AN women leads to higher rates of abduction, violence, sexual exploitation, and incarceration. They grieved the lack of attention to missing and murdered Indigenous women and girls. Formerly incarcerated women who gave birth while imprisoned, spoke of how Indigenous women are overrepresented in prisons and juvenile detention facilities, precipitated by criminalization of Indigenous women’s survival strategies.
The failure of the U.S. government to meet its legal obligation to provide health care through the Indian Health Service (IHS) was documented, including tolerance of a chronically underfunded, understaffed, and poorly managed IHS system. IHS spending per capita is 30% of Medicare, 38% of Veterans Health Administration, and less than 50% of what is spent for federal prisoners. IHS is the only federal healthcare system funded solely via an annual Congressional appropriation rather than mandatory continuous funding.
Collectively, they felt cheated of the healthcare they rightfully deserve. One woman commented: “American Indians are entitled to health care, because we have the world’s first prepaid health care system, which we paid for with our land … We forfeited those so our people could have the right to health care.”
Though their stories had been told before, they never resulted in substantive changes. Still, they came to testify hoping their stories would be heard and acted upon. Their hopes were raised by seeing Indigenous individuals serving in federal and state leadership positions. Their hopes were bolstered by the affirmation of Tribal sovereignty by ACIMM scheduling the first meeting in its 31-year history outside of the Washington, D.C. area on tribal land, the land of the Shakopee Mdewakanton Sioux Community in Minnesota. Their expectations were buoyed by being invited to share both stories of adverse experiences and examples of resilience and cultural practices that have kept Indigenous people alive through centuries of targeted extermination and discrimination.
Their testimonies profoundly affected Committee members and helped shape the final ACIMM report “Making Amends: Recommended Strategies and Actions to Improve the Health and Safety of American Indian and Alaska Native Mothers and Infants” submitted to HHS Secretary Xavier Becerra in December 2022.
While this report focuses on birth outcomes of AI/AN mothers and infants, implementing its recommendations can positively affect all mothers and babies. In 1912, Julia Lathrop, first director of the U.S. Children’s Bureau, said “… the greatest service to the health and education of (all) children has been gained through efforts to aid those who were disadvantaged…Thus all service to the disadvantaged children of the community… also serves to aid in laying the foundations for the best service to all children of the Commonwealth.” One hundred years later, it still rings true, meeting the needs of AI/AN mothers and infants, among the most disadvantaged in our country, is in the best interests of all of us.
ACIMM made a promise to the AI/AN women who testified on behalf of their families and communities that their stories and recommendations would not be lost amidst the piles of federal reports. We write to honor that commitment, to amplify their voices, share their lived experiences, and disseminate this report as widely as possible. It is past time to cast light on the abrogation of our country’s responsibilities to protect and improve the lives of all Indigenous women and infants – and make amends.
Dr. Edward P. Ehlinger, is an ACIMM member was acting chair from 2018-2022. Dr. Janelle Palacios, is ACIMM co-lead of its Health Equity Workgroup and Dr. Magda Peck, is the lead of ACIMM’s Data to Action Workgroup.