Faced with an uncontrolled syphilis outbreak, tribes in the Great Plains sought federal assistance. Months later, no one has responded.

ProPublica also sent questions about the outbreak to Dr. Natalie Holt, chief medical officer of the Great Plains office of the Indian Health Service. In response, IHS provided written responses from both Holt and HHS.

The increase in syphilis cases among Native American communities, especially in some Great Plains states, is “especially concerning,” Holt said. She said Great Plains IHS is working with the South Dakota Department of Health and tribal partners to “maximize syphilis case identification, contract tracing and treatment efforts.”

HHS wrote that it was “taking action to slow the spread, with a focus on those most affected,” noting that it had held a workshop for tribes and created a national task force to “leverage federal resources.” It also pointed to guidance released by IHS in October 2023 on how to respond to the outbreak.

Syphilis has been on the rise nationwide for a decade, and the country has repeatedly faced shortages of penicillin, the drug used to cure the disease. But a shortage of health care providers and money caused the disease to spread more quickly on reservations.

Because syphilis is treatable and can be so devastating to a baby, even one case of an infected child is a sign of a health care system failing.

Alarms about health care in the area have been ringing for years, largely due to neglect by various branches of the federal government, including chronic underfunding from Congress for the health care system for Native Americans.

Now HHS’s silence threatens to perpetuate what health professionals say is a preventable outbreak that endangers the lives of children.

“The more you procrastinate, the harder it is to control. More people infected, more infant deaths,” O’Connell said.

The U.S. government is obligated under a variety of treaties to provide health care to many tribes, including several in the Great Plains. This is done largely through the Indian Health Service, a series of clinics and hospitals on reservations and in cities, mainly in the western United States.

Unlike other major health programs such as Medicare, IHS funding is determined each year by a vote in Congress. It has always fallen far short of the $50 billion that tribes say they need. According to the most recent data available, the IHS spends just over a third of what the Veterans Health Administration spends per patient and half of what the government spends on health care for federal prisoners.

When infectious diseases inevitably emerge, as they do in any community, India’s health care system is often ill-equipped to respond, according to current and former employees. These existing shortcomings have made the syphilis outbreak even more challenging.

Holt, the chief medical officer of IHS Great Plains, wrote: “Public health initiatives are chronically underfunded.” Responding to infectious diseases requires “substantial boots on the ground,” she said, noting that the U.S. is facing a national health care workforce shortage, including shortages of nurses, caregivers and other support staff.

In late 2020, HHS released a national strategic plan to address sexually transmitted infections, including syphilis. The report noted syphilis rates among Native American babies nationwide, which by then were already three times higher than among the population as a whole. Officials have set a goal of cutting the rate by more than 15% by 2025.

Instead, syphilis cases among indigenous people in the Great Plains rose 1,865% over the next two years. About 80% of South Dakota’s cases in recent years have been among indigenous people, who represent less than 10% of the state’s population.

At Rosebud, Herr spent his weekends at work poring over patient files. He listed those who had tested positive but had gone untreated. He shared the list with colleagues and tried to figure out how to get people to get their penicillin.

“We just did this with COVID,” he thought. “We know what we have to do.”

The gentleman set up an alert in the electronic medical record system to flag patients in need of treatment. Staff hung colorful posters of pregnant bellies on the walls of reserved hospitals and clinics to encourage people to get tested.

Nurses held a few testing events in the community, where several people were diagnosed. The tribal health board held testing events in Rapid City.

Other Native American reservations were also struggling. Jessica Leston, then director of the Northwest Portland Area Indian Health Board, was tracking infectious disease data across the West when she noticed a cluster of new syphilis cases on a reservation in Montana. In a community of fewer than 10,000 people, a dozen patients had been diagnosed in one week. She alerted colleagues at the Indian Health Service headquarters and they learned that three of the cases involved stillborn babies.

The outbreak in Montana was detailed in the Indian Health Service’s budget justification to Congress last year. In 2023, the President’s budget proposal called for $9.3 billion for IHS, a modest increase over the previous year, with additional increases over the next decade. Congress approved $6.9 billion for the system that serves 2.6 million people.

“People always say we care about babies,” says Leston. “Now we don’t even care about babies anymore.”

Last year, the tribal health board engaged the CDC through a program that deploys the agency’s experts for one to three weeks during outbreaks. CDC staff concluded, as Vox reported last year, that there is not enough prenatal care in the area and patients lack transportation to the few available clinics. CDC disease researchers provided care to 14 people during their visit, noting that without their help, all but one would have gone untreated.

The CDC recommended that tribes test and treat people outside of clinics, transport patients to appointments and hire additional workers to find the sexual partners of those who have tested positive so they can also be treated. The officials also suggested that the tribes consider using rapid tests, which can provide results in time for a patient to be treated before they leave the clinic.