By Yesenia Amaro and Deepa Bharath, USC Center for Health Journalism News Collaborative

For almost two years, Sylvia Valenzuela relied on the federal Indian Health Service system to get the primary care she needed.

But when she had to see an OB-GYN for her prenatal care, she was on her own. What followed, she said, was a nightmare in which she struggled to obtain and keep Medi-Cal coverage, leaving her uninsured for a critical stretch of her pregnancy.

Valenzuela says she would like to see better health care coverage, not only for Native American pregnant women but for all Native Americans.

“I would love to see changes. I have a daughter myself … I would not like to see her go through what I went through.”

Native American women face greater health challenges and hardships during pregnancy than the average California woman. A California Department of Public Health study shows a persistently high infant mortality rate in the state, which has the nation’s largest Native population.

The Native American infant mortality rate in California “has remained high, while overall infant mortality in California has declined steadily since 2005, suggesting that (Native American) infants are not equally benefiting from social and medical advances that have reduced infant mortality for other California populations,” the June state report concluded.

The infant mortality rate among California Native Americans or Alaska natives was 6.03 per 1,000 live births from 2014-2016, compared with 4.32 for the state as a whole, according to the most current data from the Centers for Disease Control and Prevention.

To combat the issue, the state is providing grants to help several counties improve prenatal care for Native Americans.

While Native Americans are entitled to special health care services by the federal government, the system can be difficult to navigate, and has been historically underfunded, providers say. As a result, Indian Health Service programs are limited and primarily used by those who lack insurance.

Many Native Americans in Fresno, Madera and Kings counties who lack insurance turn to Central Valley Indian Health Inc. for basic health care. CVIH was formed by five local tribes: the North Fork Rancheria, Picayune Rancheria, Cold Springs Rancheria, Big Sandy Rancheria and Santa Rosa Rancheria.

CVIH operates five clinics in the three counties but only offers primary medical and dental care.

If patients need specialty services, such as seeing an OB-GYN, lab work or imaging, CVIH refers them to clinics in the community, said Charles D. Fowler, chief executive officer at CVIH. If their tribe is in California, it will pick up their tab for specialty care.

For out-of-state tribal members such as Valenzuela, “they need insurance, possibly Medi-Cal” for specialty care.

The rule limiting specialty care for Native Americans from out-of-state tribes has existed for decades at his clinic and is standard practice in California because of funding shortages, Fowler said. There is no Indian Health Service hospital that could provide inpatient and specialty services in California, while some areas in other states have multiple IHS hospitals, he said.

Given the small percentage of Native Americans among the overall state population, and the fact that tribes are not strong political entities, “there’s not a lot of focus on us,” Fowler said.

The Fresno American Indian Health Project (FAIHP) helps cover referrals for medical care for out-of-state Native Americans who are not covered by CVIH. Indian Health Service provides its largest source of grant funding.

“We are able to provide some (services),” says Selina De La Pena, chief executive officer at FAIHP. But, she added, “there’s no way that we can pay for all of their medical care.”

The situation is much the same at Riverside-San Bernardino County Indian Health Inc., which consists of a consortium of nine tribes in the Inland Empire in Southern California. About 35% to 40% of its 18,000 active patients are uninsured, according to Bill Thomsen, the organization’s chief operations officer.

The organization screens patients to determine whether they are eligible for Medi-Cal or other insurance programs, Thomsen said. If not, it will pay the cost of whatever treatment they require, including specialty care, as long as they belong to one of the nine consortium tribes.

Native Americans who do not belong to one of the tribes can still receive services but may be asked to pay for specialty services.

“This is one of the harsh realities we face,” he said. “We don’t do any fundraising. The consortium provides funding for medical equipment. But otherwise, it’s all federal funding.”

The organization’s seven clinics provide medical, dental, optometry, behavioral health, lab and nutrition services. It receives $3,400 annually through the Indian Health Service for each Native American it serves, Thomsen said.

Kristen Moore, a patient advocate at two of Riverside-San Bernardino County Indian Health’s seven clinics, said she benefited herself from the organization when she was uninsured.

“I had sprained my neck,” she said, “and the only services I had were in these clinics.”

Federal funding currently covers about 60% of the health care needs of eligible Native Americans across the country, according to the Indian Health Service website. Its budget grew from $4.8 billion in fiscal year 2016 to $5.8 billion in 2019.

“As with any organization delivering health care in rural, remote locations, IHS faces a number of challenges related to recruitment and retention, infrastructure, aging facilities and equipment, and existing health disparities,” the agency said in a statement. “In recent years, IHS has made significant progress in overcoming these challenges with support from Congress, the (Trump) administration and our tribal partners.”

State grants also will help, at least for Native American women in need of prenatal care. Fresno, Humboldt, Placer and Shasta counties each received a grant of $267,250 through fiscal year 2019-20 to provide prenatal care to Native American communities.

The grants are to provide culturally appropriate prenatal case management and home-visitation services to improve Native American maternal and infant health, said Carol Sloan, a spokeswoman for the California Department of Health Care Services.

In Tulare County, a recent focus group study concluded that young Native American women without private insurance were unlikely to receive any prenatal care during the first trimester.

The barriers to accessing prenatal care included not knowing about the pregnancy or having to reapply for health insurance benefits annually, according to the findings.

The Uncovered California project results from an innovative reporting venture – the USC Center for Health Journalism News Collaborative – which involves print and broadcast outlets across California, all reporting together on the state’s uninsured. Outlets include newspapers from the McClatchy Corp., Gannett Co., Southern California News Group, and La Opinion, as well as broadcasters at Univision and Capital Public Radio.