Native Americans Underserved, ‘Erased’ in Fresno County Health Data, Investigation Finds

Editor’s note: This story was first published by The Fresno Bee on March 27, 2021 and written by Ariane Lange.

Nooshin Moalemi can’t get the patient out of her mind.

Moalemi, a doctor at Central Valley Indian Health in Clovis, works almost exclusively with Native American residents of Fresno County.

She knows that the pregnant Native women she sees are two to three times more likely than white women to die of pregnancy-related causes. And she knows that, according to the Centers for Disease Control and Prevention, their babies die before their first birthday at almost twice the rate of white babies.

She’s haunted by the memory of a woman in her 30s who came into the clinic about a year ago with her newborn, shortly after a C-section birth. The woman had unusually high blood pressure.

A pregnancy-related high blood pressure disorder, preeclampsia, is a leading cause of maternal and infant death in the United States, according to the National Institutes of Health. A doctor at CVIH put the young mother on blood pressure medication.

“She was supposed to follow up for a blood pressure check a few days later, and she didn’t show up,” Moalemi said.

The clinic called the woman, but was unable to reach her.

A few days later, “the dad brought in [the baby], and we found out that the mom had passed,” she said. The new mother was still alive at the time of her missed appointment, and Moalemi wonders whether a house call could have saved her life. Now, the doctor treats the woman’s daughter, watching the 1-year-old as she grows up without her mom.

In Fresno County, a Native pregnant mom is much more likely to experience complications during her pregnancy than a white mom. And these bad outcomes not only endanger Native women but also threaten their infants.

The county lags behind the state in virtually every category that contributes to infant death. In 2018, 6.5 infants died for every 1,000 births in Fresno County, a rate over 50% higher than the state average.

Native American families in the county suffer a twofold health crisis: Policies leave them at greater risk for medical complications and death; and public institutions essentially make them disappear.

While Native families are known to have significant health problems during pregnancy, birth and toddlerhood, officials consider the 37,000 Native people living in Fresno County to be too small a population to collect solid data on. According to Rose Mary Rahn, director of maternal, child and adolescent health at the county Department of Public Health, “When you’re thinking about Native American, our population numbers are not significantly high, so we can’t really drill down on that population specifically on their outcomes.”

The invisibility of the Native community isn’t limited to matters of maternal health. “You find that in lots of different areas when it comes to working with tribal communities,” said Ryan Howard, the director of Owens Valley Career Development Center, which helps Native people in the Central Valley access education, career and housing support. “It’s definitely a problem.”

In May and June of 2020, county Department of Public Health documents show, the Perinatal Equity Initiative received $1.2 million in state funding and the department got another $1.1 million for public health nurses to make house calls to pregnant and parenting women like Moalemi’s patient. But none of the funds are specifically earmarked for programs to support Native women or their children, even though the Urban Indian Health Institute found the rate of infant mortality for Native babies in Fresno County is more than three times that of white babies. The county, for its part, says the Native infant mortality rate for 2015 to 2019 was 11% higher than the white rate.

But according to a statewide analysis for California’s Department of Health Care Services’ 2019 American Indian Support Services program, only Los Angeles County, which has over four times as many Native American residents, is in more dire need than Fresno County for Native maternal and infant health interventions.

Several hundred Native babies are born in the county each year, according to a state epidemiology report, but the exact numbers are unclear because, again, the data is insufficient. Discounting some babies who are only Native on their father’s side, the county recorded 83 babies born in 2019. Using a less restrictive definition, state public health research has shown the number gets substantially higher. Native Americans in the county are overlooked at every level of inquiry, starting at pregnancy and including cases when an infant dies.

Even the unique service that’s dedicated to Native mothers is struggling. The Fresno American Indian Health Project’s Family Spirit program helps mothers of Native babies navigate pregnancy and learn how to care for their babies. Stephanie Perkins, a construction project coordinator from Clovis who is Cherokee, signed up for Family Spirit when COVID-19 restrictions put a stop to Clovis Community Medical Center’s classes for first-time moms.

Through Family Spirit, Perkins, 32, learned how to make nutritious homemade baby food for her 9-month-old daughter, Kinzley, when she started eating solid foods in December. The evidence-based curriculum made Perkins feel confident in figuring out “what would be the healthiest choices for my baby,” she said.

But the Family Spirit program only has about 10 participants, though state records show they have funding for at least 40 mothers. According to the county’s health department, as well as practitioners from Central Valley Indian Health and Fresno American Indian Health Project, there is no coordinated effort in the county to target Native expectant mothers, despite their known health issues.

Data show that Black mothers and babies are at the greatest risk for complications, and the county has rolled out multiple programs to attempt to address those racial disparities. Notably, the county’s Fetal and Infant Mortality Review program looks into every Black infant’s death. According to Rahn, the county doesn’t have the funding to review all Native infant deaths. Non-Black Native babies that die are investigated only randomly. Moreover, the county doesn’t track whether pregnant women seeking services are Native.

Nancy Pierce, director of health services at the Fresno American Indian Health Project, said, “I did outreach with the supervising public health nurses downtown at Fresno County. And I was trying to speak to them about referrals…and I said, ‘We really want you guys to refer to us when you get a Native woman,’ and they’re like, ‘Whoa, hold it right there. We don’t know when we have a Native mom, because we don’t collect that data.’ So right there’s the problem.”

California Issues

Fresno County is a microcosm of a much bigger issue in California. In the state with the largest Native population in the United States, public health agencies still let Native people disappear in data, leaving their needs to be met by Indian Health Service programs, which are small, chronically underfunded and which, in California, only provide general medicine and do not staff obstetricians. For women who typically receive all their healthcare at an IHS-affiliated clinic, this creates an unusual hurdle by requiring them to seek outside OB-GYN services only for the duration of the pregnancy, and then return to the clinic after birth.

Because she’s studied maternal and child health for over 15 years, Christine Rinki wasn’t surprised when she teased data from state surveys showing that Native babies were dying more often than the average California baby. The California Department of Public Health epidemiologist correctly assumed that Native families weren’t benefiting as much from public health programs, and so while the overall infant mortality rate in California declined from 2005 to 2012, according to data in the California Birth Cohort File, Native infant deaths flatlined at a much higher rate, around 6.6 per 1,000 live births.

Rinki was surprised, however, by the number of Native babies who were born in the state in 2014: 12,773.

That number, Rinki said, “was seven times greater than a standard public health definition that’s widely used and accepted.” On California birth certificates, parents can list a total of six races, three per parent. With the standard definition, only babies born to mothers who are solely Native are recorded as Native; the fathers’ ethnicity is considered irrelevant. Rinki found that 11,000 Native births were ignored by the standard definition because they were counted under other ethnic groups. And as Rinki pointed out, “How we count populations can have substantial impact on the way in which we plan our health programs and budgets.”

Virginia Hedrick, executive director for the California Consortium of Urban Indian Health, contributed to Rinki’s CDPH report in an advisory role. “For me, it’s really emotional to see we were erased in the data,” she said. “In all of these Western forms of identity, we were erased.”

Whether a patient seeking help is Native “was a question we wanted to add in our screening, when we first do all your intake,” said Rahn of the county public health department. Adding the question to DPH screening tools has been on Rahn’s agenda for over a year, after that conversation with Pierce from FAIHP, when Rahn acknowledged that the county didn’t systematically track whether patients were Native. But, Rahn said, “We haven’t done it, because COVID just put everything on hold.”

In addition to gumming up the works at the department of public health, the pandemic is intensifying the social factors known to contribute to infant and maternal mortality, including housing instability, poverty, and stress, which are already more prevalent in Native communities than white communities.

“There’s this lack of cultural humility, lack of culturally appropriate care, and it really does limit access to care,” said Shira Rutman, a researcher at University of California, San Francisco’s Institute for Health Policy Studies who consulted on Rinki’s report. There’s a need for more data, she said, and “these data should be used to help bring attention to these issues.”

Ariane Lange reports for The Center for Health Reporting at USC’s Schaeffer Center for Health Policy and Economics. This story was supported by a grant from First 5 LA.