“Never do mild when it comes to making a difference.”

That was the message from Xavier Becerra, Secretary of the Department of Health and Human Services, to members of Native American communities seeking to address maternal and infant outcomes during a gathering in September.

For the first time in history, an Advisory Committee on Infant and Maternal Mortality meeting took place on the tribal lands of the Shakopee Mdewakanton Sioux. The actions that arose due to the conference were also historic. Following the three-day conference, medical professionals and community members put together a list of recommendations for how birth outcomes can be improved.

In following Becerra’s advice, the committee and other community partners put together a set of recommendations on how to make the biggest difference for the health of American Indian/Alaska Native (AI/AN) mothers, infants and families. In December, the committee sent the recommendations to the Department of Health and Human Services and is now awaiting a response, said Janelle Palacios, one of the report’s authors.

The disparities

Rates of maternal mortality among American Indian/Alaska Natives, have persisted for decades at levels two to four times that of white mothers and infants, the committee wrote in the report. In some regions, for example South Dakota, the maternal mortality among American Indian/Alaska Natives is seven times that of white women.

Of the deaths, an estimated 93% are preventable, the report states. Some factors include high rates of substance use, inadequate prenatal care, increased risk for preterm birth, low birth weights and mental health complications, the report stated.

Sudden Infant Death Syndrome and Sudden Unexpected Infant Death disproportionately affect AI/AN infants.

Gaps in prenatal care are also apparent. Eighty-seven percent of white women see a provider in their first trimester, compared to 55% of Native women, Democratic Sen. Amy Klobuchar said during the meeting. In Minnesota, Native women are eight times more likely to die from pregnancy complications than white women.

Socia Love-Thurman, the chief health officer for the Seattle Indian Health Board, shared a harrowing story about Stephanie Snook, a member of the Tsimshian and Tlingit tribes of Alaska who lived in Seattle.

Snook had been a prenatal patient at the clinic, but because she had a twin pregnancy and congenital heart defects, she was transferred to a different hospital. She subsequently died of cardiac failure, and later that week her twins died.

Love-Thurman sees her story as one of many examples of how urban Indians have been failed by health systems.

“Many of our Native pregnant mothers do not seek care right away due to barriers to care, such as lack of transportation, financial means, or geographic location,” Love-Thurman said. “But often the unspoken reason is their fear of the stigma and racism that they will face entering a health care system that was not made for them and has actively harmed them.”

When in an urban setting, there are many barriers to receiving proper care, she explained.

“Many urban American Indian/Alaskan Native communities were established through federal termination and removal policies that began in the 1950s. This movement to cities directly led to socioeconomic disparities as the promise of a better life, opportunities like jobs, healthcare and education were not available when they got there,” Love-Thurman said.

Urban Indian organizations receive less than 1% of the entire Indian Health Service budget, and there are no funds dedicated exclusively to urban maternal and Indian health, she said.  The Indian Health Service is the only federal health care provider funded solely through the annual congressional appropriation process, which leaves urban systems underfunded.

A review by the Tribal Budget Formulation Workgroup identified disparities in per capita spending between the Indian Health Service and other federal health care programs. In 2017, its per capita spending was $4,078, compared with $8,109 for Medicaid, $10,692 for the Veterans Health Administration, $13,185 for Medicare and $8,600 for federal prisoners.

History of the Indian Health Service

The Indian Health Service was created in 1955, but the concept dates back to the 1700 and 1800s, with U.S. military personnel administering vaccines to curb contagious diseases among Native American tribes located within military posts.

“When tribal nations entered into treaties with the U.S. government, there were provisions that ‘OK, in exchange for ceding our land and resources, there are other obligations the U.S. government will need to fulfill,’ so education, health, food, those were like three major concerns that were outlined in the government’s obligations to the tribal nations,” Palacios said.

This year, President Biden’s budget set a total of $9.3 billion in mandatory funding for IHS, which is $2.5 billion above what it was in 2022. Although it’s an increase, the Advisory Committee on Infant and Maternal Mortality pointed out how little of that funding is put toward issues of maternal and infant outcomes.

Indian Health Service facilities are also not accessible to everyone. For example, the Lower Sioux reservation doesn’t have a facility, said Stacy Hammer, a tribal health director at the Lower Sioux Healthcare Center.

“My dad was not born in the community because, at the time, Native people were not allowed to visit or be seen at the hospital system eight miles down the road … they had to drive two hours to the nearest IHS facility,” Hammer said.

The facilities that exist often struggle with staffing. Nearly one-quarter of all IHS staffing positions are vacant, and sometimes patients have to wait two to six months for an appointment.

“Honestly, I would never send any of my loved ones, even my four-legged relatives, to Indian Health Services today,” Joni Buffalohead, the chair of the Minneapolis Indian Health Board, said at the conference.

The conference

People at the conference shared personal stories to put together and strengthen the report that would later be sent to the Department of Health and Human Services. Among their goals was to find out whether the Indian Health Service records health measures and data – and whether or not it is effective.

“I suspect that there is a big difference in health outcomes, service delivery, and patient overall satisfaction, favoring those communities that have decided to take those monies and create their own clinics and programs versus Indian Health Service facilities and clinics,” Palacios said. “We don’t know because to my knowledge, there hasn’t been a study and if there has been a study, it has not been publicly released.”

Indian Health Service is largely catered towards rural areas – despite 76% of American Indian/Alaska Native people living in urban areas.

“If we talk about equity and funding, that means the money follows the disparities,” Marissa Cummings, president and CEO of the Minnesota Indian Women’s Resource Center in south Minneapolis, said at the event. “Disparities we didn’t create. Disparities that were forced upon us for over 200 years, and it’s time that this is flipped by sending us the funds to take care of our people.”

Recommendations

The report outlines three recommendations, including that the department improve the living conditions of infants and mothers by assuring access to high-quality healthcare through evaluating and sufficiently funding the Indian Health Service. Part of that involves diversifying the workforce to include AI/AN practitioners and strengthening approaches to make improvements in social determinants of health.

Buffalohead helped with the report by reaching out to the organization’s providers to get an idea of the concerns and frustrations of the patients.

Many of the providers said that their patients are worried about things like housing, employment, access to birth and reproductive health, transportation and education on alcohol use. Just last week, Sen. Tina Smith announced she helped secure $8.6 million for Minnesota Tribal Nations, and specifically, $2.25 million will go towards the Minneapolis Indian Health Board.

The report also asks the department to address the challenges, like abduction, violence and incarceration, that disproportionately affect AI/AN women, in addition to recommending the department prioritizes the health and safety of mothers and infants by establishing AI/AN fetal and infant mortality reviews, child death reviews and maternal mortality review committees.

“We lack foundational data, and that is a big issue on a large part of Indian Health Service, but also it’s an issue of shared and nationwide databases and statewide reports,” Palacios said. “We are an asterisk population. We’re something else. Just not having the statewide and federal wide attention to the importance of understanding of that, just being an asterisk population, it is unacceptable.”