How a fight over data made South Dakota’s syphilis outbreak worse

Meghan Curry O’Connell, chief public health officer at the Great Plains Tribal Leaders’ Health Board, in front of the organization’s Rapid City, South Dakota, headquarters in December 2023. O’Connell has been leading the fight to get Indigenous Americans’ public health data into tribal hands. “These are real people — these aren’t just numbers,” she says. | Tara Rose Weston for Vox

A decades-long digital turf war’s consequences for Indigenous communities, explained.

When I first talked to Meghan Curry O’Connell in November 2022, she’d been frustrated for a while.

She’d been working for the Great Plains Tribal Leaders’ Health Board for almost two years and had just taken a job as its chief public health officer. The organization — one of 12 such regional health boards — functions a lot like a state public health department but serves 18 tribes across four states. O’Connell’s new role was to help guide the work of the board’s tribal epidemiology center, which supports tribes by crunching public health data and can also aid by setting up testing and treatment programs to stop disease spread.

In the new job, O’Connell — herself a member of the Cherokee Nation — faced a difficult challenge. Syphilis was exploding across the US. South Dakota, where the Health Board serves nine tribes, had the highest rate of spread. And four out of every five people who tested positive in the state were Native Americans.

The resurgence represented a stunning setback. Before the 20th century, when syphilis was endemic globally, it caused an immense amount of horrific disease. Untreated, the bacteria liquefied the flesh and minds of adults it infected, and caused death or permanent disability in newborns infected during pregnancy at astonishing rates. In the 1940s, the discovery of penicillin changed the disease’s trajectory, and in the late 1990s, an intensive syphilis eradication campaign in the US led to a syphilis low at the turn of the millennium. For years afterward, syphilis smoldered in the sexual networks of gay men, but infections in women were a rare event.

All of that has changed over the last few years as syphilis has raged its way back, most prominently in women of childbearing age. In-utero infections are causing newborn disability and death at extraordinary rates. In 2022, in the neonatal intensive care unit in Rapid City, South Dakota, doctors confirmed a new infection every week and a half, on average.

But O’Connell faced a huge roadblock. Her agency was supposed to defend Indigenous people from the infection, but federal and state agencies were withholding the data she needed to do that — which she had a federally protected right to access.

If she had a list of who among her constituents in the Great Plains was infected, O’Connell’s staff at the health board’s Tribal Epidemiology Center, or TEC, could push back on the rising surge of syphilis in South Dakota’s tribal communities. But the TEC had no more information about how syphilis was spreading among those constituents than a member of the general public.

O’Connell says people often ask why she doesn’t apply for grants that would help support contact tracing, a key ingredient of stopping STI transmission (the terms “STIs” and “STDs,” sexually transmitted infections and diseases, are often used interchangeably in the field). “I can’t contact trace if I don’t know who’s sick,” O’Connell said. “I can’t do anything active without information.”

O’Connell’s fury runs deep. In the challenges to data sovereignty that surround syphilis not only in South Dakota but nationwide, she and many others see a much older pattern playing out. Federal and state agencies, led mostly by people at a safe remove from the consequences, have chipped away at Indigenous dignity and rights to self-determination for centuries. But now it is happening impersonally, from a distance, and mostly online.

Within those datasets are actual lives and the future of peoples who were here long before the United States was the United States. “These are real people — these aren’t just numbers,” O’Connell told me. And it’s for them that she’s fighting.

***

Before she started working at the tribal health board, O’Connell had worked mostly as a family doctor caring for adults and children at remote rural clinics, often on tribal lands. She joined the board as a medical epidemiologist in fall 2020, working on the Covid-19 response.

That’s when she got her first taste of how unhelpful a state government could be when it came to investigating outbreaks in tribal communities.

Under the leadership of Republican Gov. Kristi Noem, South Dakota had taken a largely hands-off approach to the virus in summer 2020. The state had fewer restrictions than any other, resisting a mask mandate and other policies aimed at reducing Covid-19 transmission and leaving protective measures up to residents. By the time Thanksgiving rolled around, South Dakota’s transmission rates were among the country’s highest: Hospitals didn’t have space for all the sick patients, and intensive care unit beds were in short supply.

Native Americans bore the brunt of the pandemic’s effects, representing 15 percent of the state’s deaths despite making up only 8 percent of its population as of March 2021.

In her new job at the health board, O’Connell was in desperate need of data to guide the TEC’s Covid-19 response. She asked the state health department for identifiable data on Covid-19 infections in tribal members — that is, data including names, addresses, phone numbers, and other personal information. She remembers being deeply confused by the responses, which were either “no,” or “‘yes, we’re working on it’ — but the working on it never ends,” she said.

It wasn’t just in South Dakota that federal and state public health institutions were unwilling to share critical Covid-19 data with tribal public health authorities.

Early in the pandemic, the CDC refused requests from tribal epidemiologists residing in states like Michigan and Massachusetts for the same data it was already sharing with states, and many states declined to share the same data with tribal public health authorities that it was sharing with counties.

But in South Dakota, the unwillingness to share data rubbed salt in still-fresh wounds. Before the pandemic, Noem’s government had clashed with tribes over land and transit issues related to the planned Keystone XL oil pipeline expansion, which would have posed environmental health risks to the tribal lands its path abutted. And when tribes set up coronavirus screening checkpoints on highways traversing their land as a preventive measure in a state that had none, Noem fought hard to dismantle them — even asking the White House for help. (She was unsuccessful; the tribes ultimately dismantled the checkpoints of their own accord in 2021.)

Near the end of December 2020, the state finally began sharing Covid-19 data with the TEC. But the struggle had felt like just one more challenge to tribal sovereignty.

***

When syphilis rates started to tick up in the summer of 2021, O’Connell and the TEC were still laser-focused on Covid-19. So was the rest of the country: Nationwide, many of the dwindling resources that had previously been devoted to other public health activities, including STI screening, treatment, and contact tracing, had been redirected to fighting the pandemic. According to the National Coalition of STD Directors, more than four out of five STI programs deferred services in the first year of the pandemic because of the Covid-19 response. For the better part of two years, people at risk for syphilis weren’t getting tested or treated for it, leaving them highly likely to transmit the infection.

“People who work in STDs tend to interact with people more than other avenues of public health,” said Robert McDonald, a congenital syphilis expert at the CDC. “We’re crawling through abandoned buildings, we’re crawling behind bushes, under bridges to make sure that we’re reaching people,” he said. The pandemic left those people in the dark. In the shadows, syphilis raged.

Without the background hum of STI prevention work that had kept it at bay, the infection tore through sexual networks. Between 2020 and 2021, South Dakota’s case count increased almost eightfold, from 100 to 785. But with the pandemic still raging, “I’m not sure how much attention was given — not just by us, but by anybody — to syphilis,” said O’Connell.

It didn’t take long for spiking adult transmission to show up in newborns. In 2020, the neonatal intensive care unit at Monument Health’s Rapid City hospital identified four cases that met its criteria for congenital syphilis, said Kimberly Balay, a neonatologist and the unit’s medical director. In 2021, that number was up to 19.

Syphilis’s explosive rise seemed sudden. But in reality, years of underfunding set up health vulnerabilities like trails of gunpowder throughout rural America — not just in South Dakota, and not just among Indigenous people — and the pandemic merely lit the match.

Between 2017 and 2021, cases of syphilis in women were already climbing steadily in nearly every state, a nationwide increase of 229 percent. The highest rates were among groups with the lowest access to health care, including Black, Hispanic, and Native American people who face barriers erected by centuries of racist policies and norms. Some vulnerable populations — for example, people who used drugs or were unhoused — were simultaneously more likely to get infected and less likely to seek the care that would get them diagnosed and treated, in some cases out of fear they would be punished or shamed for their circumstances.

Maternal health care had long been one of the primary points for catching and treating syphilis in women. But rural areas of the country are, increasingly, maternity deserts, where obstetric care is harder to access. This trend crashed into waves of epidemic opioid and methamphetamine use, and the risk for syphilis was amplified wherever these waves were at their highest — including some reservations.

Of the 81 babies that met the South Dakota Health Department’s definition of congenital syphilis between 2021 and mid-2023, 90 percent were born to Indigenous mothers, and 15 percent were stillborn or died shortly after birth.

Balay blames the epidemic on the dearth of prenatal care, especially for women living on reservations. “There’s just no access out there,” she said. She’s seen too many babies born to mothers who never had a chance to learn they were infected before they gave birth, infants with livers angry and swollen from infection, or “moth-eaten” spots in their bones that make it too painful to move their tiny arms and legs. Many get better with treatment, but for others, the infection will result in lifetime disability.

Everybody can get syphilis, Balay emphasized. “Yes, it’s highest in this population, but it has nothing to do with the color of their skin or their race,” she said. “It’s a disease of access.”

***

As the urgency around the pandemic response receded slightly in January 2022, O’Connell turned her attention to syphilis. By then, transmission had already reached crisis levels.

In response, the state health department mounted an education campaign, bought syphilis tests, and deployed staff into rural communities to test, treat, and do contact tracing. But the state itself doesn’t offer treatment, and compared with the kind of interventions tribal authorities can offer to Indigenous people in particular, its capacity is somewhat limited.

O’Connell knew the TEC staff could do more. For example, most of the syphilis contact tracing the state has done was over the phone; CDC experts say in-person visits, which tribes could do with the TEC’s support, are more effective. The state only uses phones and addresses to reach people; tribes and TECs can also use Facebook, which is often the most reliable way to make contact in Indian Country.

Tribes needed big public education campaigns and lots of localized testing. Most urgently, people who’d already tested positive for syphilis needed to be treated and contact traced.

The TEC had or could apply for the resources to do that work. But to get it done, O’Connell needed data on who’d tested positive and where they lived. She couldn’t get it.

To understand why, you need to understand where syphilis data comes from, where it goes, and the channels it travels (and doesn’t) during its journey.

There’s no self-administered home test for syphilis, so all tests are processed in a health care system’s laboratory. That’s true whether the health system is privately run, as most are, or managed by the federal government, as with Indian Health Service (IHS) hospitals and clinics.

Health systems are required to share those test results — along with enough information to identify the patient, usually including a name and address — with local and state health departments. HIPAA, the Health Insurance Portability and Accountability Act, allows hospitals to share this private information with authorized public health agencies in certain circumstances, like during an outbreak. In South Dakota, syphilis cases have to be reported to the state’s health department within three days.

This is where things start to break down. Tribes are sovereign, self-ruling entities that are located within states, but aren’t part of state governments. So if a TEC’s epidemiologists want to look at the state’s list of who in Indian Country has syphilis, they can’t just log in to the state’s system. They need to request the information from the state or from IHS.

These institutions are supposed to treat TECs like any other health department — and share data. But they often don’t.

The result is that staff at federally run IHS hospitals — which generally sit on reservations and provide service exclusively to tribal residents — often know who on a reservation is infected with syphilis. But the tribe’s public health authorities often do not, which means the tribe can’t bring to bear all the resources they have to respond to an outbreak, no matter how well-equipped they are.

That has left tribal medical and public health authorities watching, their hands mostly tied, while syphilis outbreaks mushroom before their eyes.

As a consequence, one of the most important resources going to waste is tribal health workers’ ability to physically reach community members. Tribal community health workers know where on reservations people live and have access to vehicles as part of their jobs. And tribal health authorities aren’t subject to the limitations that, until this past September, prevented most IHS staff from providing penicillin treatment in people’s homes or transporting them to clinics for therapy. “They could provide field treatment, they could provide transportation — if they knew who to pick up,” said O’Connell.

“People don’t even realize how little we’re able to do,” said O’Connell, “if we don’t know — not just aggregate numbers, not just ZIP-code levels — who is sick.”

***

While they awaited the data detailing already diagnosed infections, O’Connell’s team scrambled to start finding and treating additional cases. They planned a syphilis testing event to coincide with one of the biggest regional tribal gatherings of the year: the annual Lakota Nation Invitational in December 2022. The youth multisport tournament draws students from dozens of schools, plus their families, and a host of tribal organizations, said Emily Good Weasel, who manages outbreak response at the TEC. A big snowstorm led to a lower turnout than the TEC had hoped, but more people showed up for testing at a community walk a few months later.

It’s to the TEC’s advantage to test as many tribal members as it can: When a positive syphilis test originates from a lab that partners with tribes, the TEC doesn’t have to beg the IHS or the state for the identifying information that goes with it. Instead, all of the data is readily accessible to the many different staff doing the work.

Additionally, focusing testing efforts around tribal community events is one of the best ways to reach people who otherwise might not hear about outbreaks that put them at risk. People living in poverty on the reservation “don’t get to go to the cities,” said Good Weasel. They “don’t go on vacation.” But they often make it to the invitational or to smaller community powwows. That makes these gatherings a rare opportunity for the TEC to make contact with the most geographically and technologically isolated people, who have little contact with public health efforts: “You get the population of people that probably don’t have cable, probably don’t have internet, probably don’t have cellphones,” she said. To the TEC, these are golden opportunities to provide health education and testing — including around syphilis — to the broadest cross section of its constituents.

This year, the TEC began partnering with Rapid City-based Oyate Health Center (a local tribally run clinic, which the health board manages) and Monument Health (the dominant local health system) to offer regular syphilis testing at the Oglala Lakota College on the north side of town. The events take place a short walk from a housing bloc where most of the tribal population in Rapid City lives, said Good Weasel.

At one of these events in July, health educator Tipi Means greeted every one of the 105 people who walked in the door for testing, and Monument medical staff clad in red scrubs drew blood.

In the region, about 9 percent of tests turn up positive, on average (the Health Board wouldn’t provide an exact number of cases identified that day). The following Monday, Tyler Broghammer, a public health nurse from Oyate Health Center, would call people with newly diagnosed infections to make a treatment appointment, or offer to come to their house and give them a penicillin shot in their living room.

This setup — where tribal health authorities have full control of the testing event’s design and location and of the data it generates, and where they are empowered to follow up and treat everyone who tests positive — works. O’Connell said the vast majority of the people who’ve tested positive at a Lakota College event have been reached for treatment.

The TEC staff would like to help tribes extend these services to every tribal member with syphilis in its jurisdiction, not just the ones who get tested at one of its events. But that can’t happen if the TEC doesn’t know who those people are. When O’Connell realized the state health department wasn’t going to make it easy for her to get contact information for Native Americans with syphilis diagnoses, she says she tried to get the information elsewhere — from IHS, clinical laboratories, private clinical facilities.

Bupkis.

“Data is so important because it’s power,” says O’Connell. And here, she feels powerless.

Ideally, the TEC, the state, and IHS would all share access to the same list of people who tested positive for syphilis, and would each do their part to fill in the gaps between infection and cure. But the current system’s lack of coordination makes that impossible, and leads to results far inferior to what the tribes and TECs could do if they were given the keys and literally allowed to drive.

When I spoke to O’Connell again in March, five months after we first talked, case rates were already higher than at the same point in 2022. Still, “TECs are essentially second-class citizens within the public health system,” she said. The state still hadn’t shared any identifiable data.

A representative of the South Dakota Department of Health declined to make a staff member available for an interview, and the state’s open records laws protect the communications of its employees from public review. However, when asked about its refusal to share data with tribal public health authorities, a department representative wrote in an email that the TEC didn’t have the infrastructure to host identifiable data on syphilis cases until fall 2023.

However, according to a TEC epidemiologist, secure data transfers between the state and the TEC worked fine months and even years earlier.

“They shared identifiable data on COVID with us during the pandemic,” wrote the TEC representative. “If we didn’t have the infrastructure, why/how would they have shared that identifiable data in 2021?”

***

The way things are in South Dakota is not how things are supposed to be: O’Connell’s office is legally entitled to the data she’s been requesting for more than two years.

A 2010 reauthorization of the Indian Health Care Improvement Act has been widely interpreted to mean tribes should have access to any data IHS maintains for public health purposes. But as O’Connell learned during the pandemic, just because a law is in place doesn’t mean it’s being followed.

Part of the problem is the federal government’s outdated technology.

The Indian Health Service, an agency housed within the Department of Health and Human Services, delivers care to Native Americans and Alaska Natives nationwide through a network of inpatient and outpatient facilities, most of which are on tribal land.

The agency is notoriously and persistently underfunded, and as a result, its data systems are wildly out of date. The 2010 law requires the Department of Health and Human Services, including IHS, to give tribes “access to use of the data, data sets, monitoring systems, delivery systems, and other protected health information” it holds. But in most parts of the country, that simply hasn’t happened.

In fact, problems sharing Covid-19 data with tribes were pervasive enough during the pandemic to spark a Government Accountability Office (GAO) inquiry, published early last year. According to the resulting report, only one of the 12 TECs in the US had real-time access to IHS data as of November 2021, and three didn’t have any access to IHS data at all.

I asked IHS what the current obstacles were to sharing data with tribes. In response, a representative said the agency “has well established and active data sharing partnerships with TECs,” but did not explain why so few TECs were actually receiving IHS data through those partnerships.

One way around this problem is for the state to share with TECs the data it receives from IHS, along with data about all other tribal members in the state who get diagnosed with or treated for syphilis at other, non-IHS facilities. That type of fix is fine for states like Washington, where the relatively productive relationship between tribes and state government has led to a data-sharing agreement that gives tribes access to the state health department’s data related to its members. But in states whose governments have rockier histories with tribal leaders, it’s not fine.

Melinda Salmon, a public health adviser in the CDC’s Division of STD Prevention, acknowledged it was easy to see the state as stonewalling but said it’s more complicated than that. The state’s perspective is that “they have a duty to protect the individuals who that data represents,” she said.

“It can be easy to sometimes say, ‘You’re putting up barriers,’” she said. “But I feel like the barriers often are there to protect people.”

Overall, the data-sharing problem is a national one, and federal officials aren’t focusing on the right solutions, said Anne Zink, chief medical officer at the Alaska Health Department and until recently, president of the Association of State and Territorial Officials. This summer, she reached peak frustration at a data equity meeting convened by the National Indian Health Board. When people there talked about solutions to data-sharing problems, the big buzzword was “relationships.” That is, relationships between the public health authorities who want data and those who hold it — between tribal and state epidemiologists.

Zink was in attendance with several leaders of the 229 Alaskan tribal nations she regularly collaborates with. “We were like, ‘Dude, we have relationships. Like, we’re sitting here next to each other. We went to lunch together. We’re going to dinner together. We’ve worked together for years. But what we need is legal clarity and interpretation — because you get one state lawyer, and one tribal lawyer, and one federal lawyer, and there are as many legal interpretations as there are lawyers to offer one,’” she said.

There’s at least some awareness in Congress that this is an ongoing problem. The GAO report sufficiently outraged two legislators, Sens. Tina Smith (D-MN) and Lisa Murkowski (R-AK), who then co-sponsored a bill requiring all the agencies involved to develop internal processes to fix the problem. It didn’t pass when it was first introduced in 2021 and is in the process of being rewritten.

Meanwhile, at the recommendation of the report’s authors, IHS began developing policies and procedures for sharing data with TECs — a process still underway as of December 2023.

None of this was happening quickly enough for O’Connell.

***

In early 2022, O’Connell began talking to the CDC’s Division of STD Prevention about how it could help.

The agency didn’t have the data she was looking for. All the syphilis data states share with the CDC lacks the names and addresses her team needed, and the CDC couldn’t force the state to share data with the TEC.

The idea that the CDC has the authority to collect state data, and to compel states to turn over its data, is a common misconception, said Zink. “The authority for that lies within the states, not within the federal government,” she said. “That understanding of public health authority in general, frankly, was missed by most people during the entire pandemic and the conversations post-pandemic.”

What the CDC could do, if the TEC asked for it, is conduct its own investigation into the question of why syphilis was spreading so quickly among Indigenous people in the Great Plains. The TEC formally requested that investigation in February, and in July, nine epidemiologists from the agency’s STD group arrived in Rapid City for two weeks.

On the third morning of their visit, a small group of CDC visitors sat across from TEC senior informatics director Nick Hill and epidemiologist Sarah Shewbrooks in a large conference room at the health board’s Rapid City headquarters. Moments earlier, Hill and Shewbrooks had learned some extraordinary news: The South Dakota health department had agreed to give the CDC access to tribal members’ identifiable syphilis data for the duration of their investigation, and the TEC would also have access to a snapshot of the data. The other three states in the TEC’s catchment area — North Dakota, Nebraska, and Iowa — had also indicated they were taking meaningful steps toward sharing data.

I watched from across the room. It felt like a momentous occasion — an achievement more than two years in the making; an important reason O’Connell wanted CDC in South Dakota to begin with; and a leap forward in the health board’s power to help save tribal members’ lives.

But Shewbrooks and Hill weren’t smiling. It felt too late.

“We’re in this situation because of this data-sharing stuff,” said Shewbrooks. “You guys have seen the data.” The echoes of the state’s failure to share the data before this moment would last decades, she said, in the form of disability wrought by the disease. It shouldn’t have required this much work, nor the CDC’s boots on the ground, to acquire what the TEC had an established legal right to.

Plus, as Hill emphasized, if the state wasn’t solving the crisis, “then you need local-level resources to step up.” The TEC and the tribes could be that resource, but only if the state allowed them.

The high-level dithering over data access was only taking place because the people it affected were already so systematically disempowered. “I’m just going to keep saying it and making everybody uncomfortable: These are brown people and brown babies, and that’s why this is happening,” said Shewbrooks.

The dynamics at play weren’t new: They were also present, and also lethal, during the pandemic. But Covid-19 had been incurable for most of that time, while syphilis “has been cured since 1940-whatever,” Shewbrooks later told me.

“When you see my face not beaming with joy, it’s because the politics in public health are killing people.”

Sarah Wondmeneh, a physician and Epidemic Intelligence Service Officer at the CDC who led the team’s investigation, was in the room that day at the TEC’s offices, and later emphasized the need for collaboration in an interview. “People have to work together” rather than in opposition, she said. “The bad guy is syphilis.”

***

On the morning of the CDC’s last day in town, the team gave a Zoom presentation to a group of more than 130 tribal and state public health staff to share what they’d learned and done during their visit to the area, and to provide some preliminary recommendations.

As they scrolled through pie charts and line graphs, epidemiologists explained how few Indigenous people have access to a vehicle, how little prenatal care there is on reservations, and how scary it is for people who use drugs to talk to health care providers. They showed a graphic with lines connecting the six potentially syphilis-infected people in a sexual network that were identified by contact-tracing one person who had tested positive. They described an epidemic of poverty, isolation, discrimination, and distrust.

When it was over, O’Connell thanked them. “It was very thorough and we really appreciate it. But—” She paused, and her eyes filled with tears. “My heart is very heavy. It’s very tragic, what is happening to Native people.”

Two weeks after the CDC left South Dakota, I talked to O’Connell by video chat. She was in her home office in Minneapolis; I was in mine in Atlanta. The TEC still did not have access to tribal syphilis data. There’d been some improvement in what tribal epidemiologists could see compared to earlier — now, they could list cases by ZIP code rather than just by county. But names and addresses were still off-limits; she was back to not knowing who to treat.

The South Dakota Department of Health and TEC representatives said the two agencies are currently negotiating the details of a data-sharing agreement, but disagreed on who is holding up the process. The state claims it’s waiting on the TEC to sign the agreement, and says the “ability to receive data is in their hands,” while TEC representatives said it has proposed changes that the state has not yet met with them to review.

Hill said the state’s epidemiology and informatics people were making “good faith efforts,” and was optimistic they would overcome the remaining barriers, including disagreement about who owns the data once it’s transferred to the TEC.

When I checked in again with O’Connell in December, not much had changed — although she now had the additional worry of a penicillin shortage to contend with.

“I work so much on the data issues,” O’Connell told me, “because one way to reduce barriers is to give the tribes more power to respond.”

It’s not over, she said. She’s still trying. She’s still mad.

This story was reported as part of an Association of Health Care Journalists fellowship, supported by the Commonwealth Fund.