By Jazmin Orozco Rodriguez for KFF Health News.
Broadcast version by Roz Brown for New Mexico News Connection reporting for the KFF Health News-Public News Service Collaboration

It's not easy to make public health decisions without access to good data. And epidemiologists and public health workers for Native American communities say they're often in the dark because state and federal agencies restrict their access to the latest numbers.

The 2010 reauthorization of the Indian Health Care Improvement Act gave tribal epidemiology centers public health authority and requires the federal Department of Health and Human Services to grant them access to and use of data and other protected health information that's regularly distributed to state and local officials. But tribal epidemiology center workers have told government investigators that's not often the case.

By July 2020, American Indians and Alaskan Natives had a covid-19 infection rate 31/2 times that of non-Hispanic whites. Problems accessing data predated the pandemic, but the alarming infection and death rates in Native American communities underscored the importance of making data-sharing easier so tribal health leaders and epidemiologists have the information they need to make lifesaving decisions.

Tribal health officials have repeatedly said data denials impeded their responses to disease outbreaks, including slowing contact tracing during the pandemic and an ongoing syphilis outbreak in the Midwest and Southwest.

"We're being blinded," said Meghan Curry O'Connell, the chief public health officer for the Great Plains Tribal Leaders' Health Board and a citizen of the Cherokee Nation. The sharing of data has improved somewhat in recent years, she said, but not enough.

Federal investigators and tribal epidemiologists have documented a litany of obstacles keeping state and federal public health information from tribes, including confusion about data-sharing policies, inconsistent processes for requesting information, data that's of poor quality or outdated, and strict privacy rules for sensitive data on health issues like HIV and substance misuse.

Limiting the ability of tribes and tribal epidemiology centers to monitor and respond to public health issues makes historical health disparities difficult to address. Life expectancy among American Indians and Alaskan Natives is at least 51/2 years shorter than the national average.

Sarah Shewbrooks and her colleagues at the Great Plains Tribal Epidemiology Center are among those who've found themselves blinded by bureaucratic walls. Shewbrooks said the data dearth was particularly evident during the covid pandemic, when her team couldn't access public health data available to other public health workers in state and local agencies. Her team was forced to manually record positive cases and deaths in the 311 counties of North Dakota, South Dakota, Nebraska, and Iowa - the region the center serves.

Shewbrooks, director of the center's data-coordinating unit and its lead epidemiologist, estimates staffers spent more than a year's worth of their time during the pandemic scraping together their own datasets to steer information to tribal leaders making decisions about closing down reservations and asking residents to isolate at home.

She said the process was frustrating and stressful, especially since it robbed her team of hours they could've spent trying to save lives in the communities they serve. The tribes in their region were doing "incredible things," she said, by providing food and shelter for people who needed to quarantine.

"But they were having to do it all without being given real-time understanding of what's going on around them," Shewbrooks said.

Contact tracers who work for state governments cover Native American populations, but it's important to have people from within the community take the lead, Shewbrooks said. Tribal workers are better equipped to move around within their communities and meet people where they are.

Shewbrooks said state contact tracers relied on calling and texting patients, which is often not the most effective method. Tribal members can be a hard-to-reach community for state workers whose protocol is to move on to the next case if they don't get a response.

"So many cases were just getting closed," Shewbrooks said.

In 2022, the Government Accountability Office published a report that confirmed concerns raised by tribal health officials, including at the Great Plains tribal epidemiology center. Federal investigators found that health officials working to address public health issues in Native American communities dealt with federal agencies lacking clear processes, policies, and guidelines for sharing data with tribal officials.

In one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the U.S. had access to Centers for Disease Control and Prevention covid data, but not all had full data. Some centers had access to case surveillance data that included information on positive cases, hospitalizations, and deaths. Only half said they also had access to covid vaccination data from HHS.

The GAO report also found that staffers responding to data requests at HHS, the CDC, and the Indian Health Service did not consistently recognize tribal epidemiology centers as public health authorities. Center officials told federal investigators that they'd sometimes been asked to request data they needed as outside researchers or through the Freedom of Information Act.

The report recommended agencies make several corrections, including responding to tribal epidemiology centers as required by law and clarifying how agency staffers should handle requests from epidemiology centers.

HHS officials agreed with all the recommendations. The agency consulted with tribal leaders in fall 2022 and, this year, published a draft policy that clarifies what data centers can access.

Some tribal leaders say the proposal is a step in the right direction but is incomplete. Jim Roberts, senior executive liaison in intergovernmental affairs at the Alaska Native Tribal Health Consortium, a nonprofit organization that provides care and advocacy for Alaskan tribes, said the GAO report focused on tribal epidemiology centers, which operate separately from tribal governments, each serving dozens of tribes divided into regions. The report left out tribes, which he said have a right to their data as sovereign nations.

HHS officials declined an interview request, but Samira Burns, principal deputy assistant secretary for public affairs, said the agency is reviewing feedback and recommendations it received from tribal leaders during consultation on the draft policy and will continue to consult with tribes before it's finalized.

Stronger federal policy on tribal data sharing would help with relationships with states, too, Roberts said. Tribal officials say problems they've experienced at the federal level are often worse in states, where laws might not recognize tribes or tribal epidemiology centers as authorities that can receive data.

At the Northwest Tribal Epidemiology Center, which works on behalf of tribes in Washington, Oregon, and Idaho, forging a data-use agreement with state governments in Washington and Oregon before the pandemic helped their response by providing immediate access to near real-time data on emergency room and other health care facility visits. The center's staff used this data to monitor for suspected covid-related visits that could be shared with tribal leaders.

It took seven months for the center to get access to covid surveillance data from the CDC, said Sujata Joshi, director of the Northwest center's Improving Data and Enhancing Access project, and about nine months for HHS vaccination data after vaccinations became available. Even after getting the information, she said, there were concerns about its quality.


Jazmin Orozco Rodriguez wrote this story for KFF Health News.


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It is National Rural Health Day and experts are flagging research showing increasing health disparities between urban and rural places, including in South Dakota.

A new advisory from the American Heart Association shows between 2010 and 2022, cardiovascular death rates increased a whopping 21% among young adults in rural areas, especially after the onset of COVID-19. In urban areas, the rate increased only 3%.

Dr. Karen Joynt-Maddox, associate professor of medicine at Washington University, chairs the association's presidential advisory committee and said the change is due to a mixed bag of increased risk factors in rural areas.

"If you put that on top of a real problem with health care infrastructure and access in rural areas, you sort of have a perfect storm for worsening cardiovascular health."

Joynt-Maddox noted traditional risk factors include high blood pressure, diabetes and obesity, which have been increasing in rural areas over the last few decades. Other contributing factors, she said, include poverty, food insecurity, depression and substance use disorder.

Tim Nikolai, Midwest senior rural health director for the American Heart Association, said rural communities have less access to resources like health care and grocery stores with fresh produce. Even access to high speed internet contributes to health outcomes. Health care providers are stretched thin, Nikolai added.

"It stretched hospitals and health care providers to try to serve the needs of their community the best way they can," Nikolai observed. "And that's something we're trying to collaborate with them on, is how can they meet people where they are?"

Nikolai listed some work happening in South Dakota including offering blood pressure monitoring at local libraries, installing four new Public Health AmeriCorps members across the state and the town of Spearfish prioritizing public CPR training and AED access.

More than 38 million Americans live with diabetes, including nearly 1 million Georgians.

The Georgia Department of Public Health estimates another 230,000 people in the state may have diabetes but don't know it.

During National Diabetes Month, Dr. Griffin Rodgers - director of the National Institute of Diabetes, Digestive, and Kidney Diseases at the National Institutes of Health - emphasized the importance of managing diabetes early to prevent serious health complications.

"Diabetes can damage blood vessels and nerves," said Rodgers, "so the patients that have it have a higher risk of developing conditions like a heart attack or a stroke, diseases of the kidneys and the eyes and the teeth, as well as the lower extremities."

Between 2014 and 2018, diabetes led to over 100,000 hospitalizations and 154,000 emergency-room visits in Georgia.

But Rodgers said diabetes is preventable and manageable. He added that regular wellness visits - where blood sugar, blood pressure, and cholesterol are checked - are key to staying healthy.

Rodgers said a healthy diet is a major part of managing or preventing diabetes.

He suggested eating plenty of fresh produce, whole grains, and lean proteins like fish - and cutting back on sugary drinks by choosing water instead.

Regular exercise and seven to eight hours of sleep each night are also important.

"On the physical activity side, 30 minutes a day, five days a week for most adults is what's
generally recommended," said Rodgers. "Just walking. And if you can't do the 30 minutes all at one time, breaking it into either two 15, or three 10-minute intervals is sufficient."

Early signals that diabetes could be a problem include frequent urination, constant thirst or hunger, fatigue, blurry vision, nausea, unexpected weight loss, or tingling in your hands and feet.

Rodgers said managing diabetes can be as simple as focusing on "the A-B-Cs of care" - checking your A1C, blood pressure and cholesterol levels, and quitting smoking.




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California could be in for some big cuts to health care for low-income families under a second Trump administration, according to health experts.

Policy specialists at the nonprofit KFF said they are bracing for Trump allies in Congress to make major reductions to Medicaid expansion under the Affordable Care Act, in order to pay for big tax cuts promised by the president-elect.

Larry Levitt, executive vice president of health policy at KFF, said it would force states to backfill or raise costs.

"For the ACA, simply letting enhanced financial aid expire after next year would result in big out-of-pocket premium increases, reduced enrollment and more people uninsured," Levitt projected.

Robert F. Kennedy Jr., President-elect Trump's choice for Health and Human Services Secretary, did not say much on the campaign trail about funding for Medicaid or the Affordable Care Act, so his positions are unclear. Kennedy has expressed skepticism about vaccines and has said the U.S. should stop putting fluoride in drinking water.

Jennifer Kates, senior vice president and director of the Global Health and HIV Policy Program for KFF, said the Centers for Disease Control and Prevention cannot require states to follow its recommendations on vaccines and fluoridation.

"That's up to states and local governments," Kates explained. "But CDC can recommend, and if those recommendations are not being made or being watered down or changed, that sends a message to states, to schools, to parents."

Health advocates are also raising concerns DACA recipients could lose access to health plans sold on the state marketplaces created under the Affordable Care Act. Changes to so-called "public charge" rules could make families with mixed immigration status hesitant to use Medicaid benefits.


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