Facing Unchecked Syphilis Outbreak, Great Plains Tribes Sought Federal Help. Months Later, No One Has Responded.

Rosebud Sioux Reservation in South Dakota(photo/Canva Pro)

Details: By Anna Maria Barry-Jester, ProPublica; May 07, 2024

It was 2022 when pediatrician Tom Herr realized just how many babies on the Rosebud reservation in South Dakota were already infected with syphilis when they took their first breaths. He was seeing more and more patients who’d spent their first weeks in a tangle of tubes that pumped antibiotics into their tiny bodies. Some had died in the womb.

This story was originally published by ProPublica.

With growing alarm, Herr and other health officials spread the word, appealing to bosses at the federal Indian Health Service and tribal health authorities, writing op-eds and talking to reporters. But as the months ticked by, the crisis mounted.

By 2023, an astonishing 3% of all Native American babies born in South Dakota were infected.

Now, according to tribal leaders, the syphilis rate among American Indians and Alaska Natives in the Great Plains surpasses any recorded rate in the United States since 1941, when it was discovered that penicillin could treat the infection.

On a map of rising syphilis cases nationwide, some reservations stand out like a red alert.

Desperate for help, in late February of this year tribal leaders from four Great Plains states took the extreme step of asking U.S. Department of Health and Human Services Secretary Xavier Becerra to declare a public health emergency. The Great Plains Tribal Leaders’ Health Board asked the secretary to deploy commissioned officers from the U.S. Public Health Service to help diagnose and treat people for syphilis, and to provide emergency funding for the tribes to improve their response capabilities.

More than 10 weeks later, Becerra has not responded.

“We need to free up resources so we can take extraordinary measures to respond to these extraordinary circumstances,” said Meghan Curry O’Connell, chief public health officer for the tribal health board.

Syphilis, which is transmitted primarily through sexual intercourse, is easily treatable. But the disease is life-threatening when left unchecked. Babies infected in the womb can be born in excruciating pain, with deformed bones, brain damage or other serious complications. They can even die.

The emergency declaration may be the only way to get money in time to prevent more babies from getting sick or dying. The typical funding processes — which go through the federal budget or the Centers for Disease Control and Prevention — can lead to a delay of a year or more before money trickles down to communities.

In response to questions from ProPublica about why Becerra hasn’t replied to the emergency request, an HHS spokesperson wrote that “HHS has received the request and will respond directly” to the Great Plains tribes, but did not provide a time frame for doing so.

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

The rise of syphilis cases among Native American communities, particularly in some Great Plains states, is “especially concerning,” Holt said. She said that 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 significantly impacted,” noting that it had held a workshop for tribes and created a national task force to “leverage federal resources.” It also pointed to guidelines IHS had released in October 2023 about how to respond to the outbreak.

Syphilis has been on the rise nationwide for a decade, and the country has repeatedly run low on penicillin, the medicine used to cure it. But amid a shortage of health care providers and money the disease was spreading faster on reservations.

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

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

Now, the silence from HHS is threatening to perpetuate what health workers say is a preventable outbreak that endangers the lives of children.

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

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

Unlike other major health programs like Medicare, IHS funding is determined by a congressional vote each year. It has always fallen far short of the $50 billion tribes say is needed. The IHS spends a little over one-third of what the Veterans Health Administration spends per patient and half of what the government spends on health care for federal prisoners, according to the most recent data available.

When infectious diseases inevitably arrive, as they do in every community, the Indian Health Service is often ill equipped to respond, according to current and former employees. Those existing shortfalls have made the syphilis outbreak even more challenging.

Holt, the chief medical officer at 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 experiencing a national health care staff shortage, including a dearth of nurses, providers and other support personnel.

At the end of 2020, HHS released a national strategic plan to tackle sexually transmitted infections, including syphilis. The report noted concerning rates of syphilis in Native American babies across the country, which by then were already three times higher than in the population as a whole. Officials set a goal to bring the rate down by more than 15% by 2025.

Instead, over the next two years, the rate of syphilis among Indigenous people in the Great Plains soared by 1,865%. Around 80% of the cases in South Dakota in recent years have been among Native people, who represent less than 10% of the state population.

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

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

Herr set up an alert in the electronic medical record system to flag patients who needed treatment. On the walls of reservation hospitals and clinics, staff hung colorful posters featuring pregnant bellies, encouraging people to get tested.

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

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

The Montana outbreak 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 from 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,” Leston said. “Now we aren’t even caring about babies.”

Last year, the tribal health board called in 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 isn’t enough prenatal care in the area and that patients lack transportation to the few available clinics. CDC disease investigators provided care to 14 people during their visit, noting that all but one would have gone untreated without their help.

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’ve tested positive so that they can be treated as well. The officials also suggested the tribes consider the use of rapid tests, which can return results in time for a patient to be treated before they leave the clinic.

All of those suggestions are nearly impossible to implement, tribal health officials told ProPublica.

Prenatal care used to be more readily available at the Indian Health Service facilities across the Pine Ridge, Rosebud and Cheyenne River reservations, which span nearly 5 million acres, an area approximately the size of New Jersey.

Over the last two years, many staff left and weren’t replaced. Across the three reservations, only Pine Ridge had an obstetrician for much of the last year, according to several people with direct knowledge of the situation. Holt said that the IHS is working to hire more providers and that there is now an additional part-time obstetrician at Pine Ridge and another working two days a week at Cheyenne River.

People with any kind of pregnancy risk factor — including a patient over 34 and another with high blood pressure — have said they were told to drive up to three hours to Rapid City.

Tribal health officials lack the staff or money for mobile clinics and more testing events to find new cases.

They also struggle to track existing cases because three states and the Indian Health Service have refused to share contact information for patients who test positive. South Dakota recently began sharing this crucial information with the tribal health board, but the Indian Health Service and Iowa, North Dakota and Nebraska still do not. Health departments in Iowa, North Dakota and Nebraska did not respond to questions about data sharing.

As for the rapid tests, the Indian Health Service nationally recommends their use. But current and former staff in South Dakota said that area managers have denied their requests for these tests. Instead, providers said, they must use a test that has to be sent out to a lab and wait three to seven days for results. By that time, it can be hard to locate patients for treatment.

Holt said that the IHS “supports data sharing in the interest of improving population health” and that tribes must follow an established policy to request and receive the data. Regarding rapid tests, she wrote that the Great Plains IHS prefers to do the lab-based testing because “we feel this approach improves speedy access to treatment.”

The CDC also urged the tribes to research how punitive policies stop people from seeking medical care. In South Dakota and on several reservations, a pregnant person with illegal substances in their system can be charged with a felony. And providers are required to contact child protective services if they know a person has used drugs during pregnancy. Doctors described patients being screened for drug use at hospitals, with or without their consent, and then taken to jail. People in the area know this risk and sometimes avoid medical visits as a result, women and providers said.

The South Dakota tribes and state officials have shown no indication they are considering changing these policies.

Immediately after the CDC visit last summer, the tribes put in a formal request to the agency for more help. A few CDC staffers returned to the area in April to help find and treat patients who have tested positive. It’s an important step, O’Connell said. But given how far syphilis has reached into the community, a few days of help at few reservations is not enough to stop babies from dying.

The tribes also worry about the damage that’s already been done. In addition to asking for help preventing new infections, leaders asked for a longer-term plan to make sure that children born with syphilis get the care they need in years to come.

Herr remains haunted by one patient file from Rosebud. It belongs to a young woman who came to the hospital in labor and delivered a stillborn baby. A week later, when the patient was long gone, test results came back showing she had syphilis.

Hospital staff tried a few times to follow up to no avail. The woman returned to the hospital months later, this time in the midst of a miscarriage. Based on her medical records, Herr believes she lost both pregnancies due to untreated syphilis.

When Herr retired from IHS in January of this year, the woman still hadn’t been treated.

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