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about data-sharing policies, inconsistent processes for requesting information, data that's of poor quality or outdated, and strict privacy rules for sensitive data on health issues like HIV and substance misuse.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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By Marilyn Odendahl for The Indiana Citizen.
Broadcast version by Joe Ulery for Indiana News Service reporting for the Indiana Citizen-Free Press Indiana-Public News Service Collaboration.

In a move applauded by advocates and lawmakers alike, the Indiana General Assembly will be taking a closer look at the estimated $2.2 billion in medical debt that is saddling many Hoosiers and often causing a devastating impact beyond the household budget.

“We all want to be able to care for ourselves and our loved ones, but medical debt poses undue financial hardship that prevents this from being a reality for countless Hoosiers,” Zia Saylor, researcher at the Indiana Community Action Poverty Institute, said in a press release. “It is important that lawmakers recognize the medical debt crisis we have and the urgent need for policies to address it.”

The Legislative Council included medical debt among the 22 topics that it assigned for further examination by the interim study committee process this summer and fall. On Wednesday, the council members unanimously passed a resolution that divided the topics between more than a dozen interim committees.

Initially, the Legislative Council began with 100 proposals for study topics this summer, plus 300 agency reports that presented more topics for possible review, according to George Angelone, executive director of the Legislative Services Agency. Through a “bipartisan process,” the list was whittled down to less than two dozen.

Other subjects scheduled for study include the economic value of Indiana’s public land for recreation, barriers to entering licensed professions, teaching water safety as part of the K-12 curriculum, salaries for K-12 administrators, the usage and cost of long-term-care insurance, and pollution caused by improperly discarded cables. Also, the Government Reform Task Force has been charged with reviewing the “efficiency and effectiveness” of various state boards, commissions and councils, and the Artificial Intelligence Task Force, established by state statute in 2024, will continue to examine the use of AI technology and the potential effects on Indiana residents’ constitutional rights, employment and economic welfare.

After the council hearing, Senate President Pro Tempore Rod Bray, R-Martinsville, said the work of the interim study committees are an important part of the legislative process. It allows state representatives and senators to dive into the topics and enables the public to provide input as well, which is helpful, he said. Bray and House Speaker Todd Huston, R-Fishers, serve as chair and vice chair, respectively, of the Legislative Council, which is comprised of eight members of the Indiana Senate and eight members of the House.

“Maybe it doesn’t end up in a proposed bill for the next legislative session, but people are always going to walk away with more facts and more information about that particular subject,” Bray said.

Democratic lawmakers were upbeat about the assignments to the committees. Senate Minority Leader Shelli Yoder, D-Bloomington, said the Democrats pushed topics that focused on improving Hoosiers’ lives. Many families, she said, are struggling to raise their children, care for their aging parents and stretch their wages to cover rising costs.

“That why our caucus fought very hard to make sure that this year’s study committee didn’t just check a box (but) that they had something meaningful to offer to Hoosiers,” Yoder said after the hearing. “We pushed hard for real topics, real impact and we have many successes to point to.”

‘Medical debt is no-fault debt’

For Democrats, the legislature’s decision to study medical debt is a win.

The interim study committee on the courts and the judiciary has been tasked with examining medical debt, the only topic on its agenda. As part of its study, the committee will look at financial protections for individuals through caps on monthly payments for such debt and limitations on collections or liens on property, along with restrictions on garnishment of wages. Also, the committee will focus on nonprofit and county hospitals by reviewing the definition for charitable care and the requirement to offer payment plans in addition to notices about medical bills to patients.

Speaker Huston and Sen. Fady Qaddoura, D-Indianapolis, both suggested the medical debt topic.

Huston said the topic was spurred by the many different constituents who reached out, telling their stories of the immense financial burden that overdue medical bills can be.

“We will at least take a look at it and understand it, particularly for low-income folks or people that have had some kind of… large, expensive medical procedures,” Huston said of medical debt. “How do you help them get out from behind the eight ball? We’ll take a look at that and see what the options are.”

During the 2025 legislative session, Qaddoura introduced Senate Bill 317 which sought to address medical debt by offering protections similar to those that will be studied by the committee. The measure died after it was narrowly defeated in a 26-to-23 vote in the Senate.

“We should stop penalizing people for getting sick,” Qaddoura said in a statement. “Medical debt is often unavoidable and disproportionately affects those already struggling. Our goal should be to create a path forward that lifts people up, not holds them back.”

Indiana residents are some of the most burdened with medical debt in the country. A 2022 study by the Indiana Community Action Poverty Institute, Grassroots Maternal and Child Health Initiative, and Prosperity Indiana, found that residents of the Hoosier state had the 11^th highest share of medical debt in collections nationwide, which equals $2.2 billion outstanding and was the highest among the state’s Midwestern neighbors.

Delinquent or high medical debt contributes to a number of harmful consequences, according to the report. More than negatively impacting the financial health of a household, medical debt can degrade an individual’s physical and mental health. Also, unpaid medical bills can create barriers to credit and housing and can lead to garnishment of wages, property liens and reduced access to health care services.

“Medical debt is no-fault debt,” Dave Almeida, director of state government affairs for the Leukemia & Lymphoma Society, said in a press release. “It’s different from other debt because no one chooses to become sick, which means that no one should have to choose between putting food on the table, paying the rent, putting the kids through college, or engaging in life-saving treatment.”

Council bypasses some committees

Six study committee created by statute were not assigned any topics, including the elections body.

The interim study committee on elections has not met since 2017. However, bills that mostly restrict voting and elections have been introduced each legislative session, culminating in a flood of legislation this year that one voting-rights advocate described as “an assault on democracy.”

Bray did not express any concern about not giving any topics to elections and other committees, including education, public policy and public safety, and military affairs.

“We had a lot of legislation in those areas this last session and sometimes you’ve got to let some of those issues bake a little while … before you have a new issue that you really have to grapple with,” Bray said.

Yoder said she was disappointed that the Child Welfare Task Force was not assigned any topics. Passed this session with strong bipartisan support, House Enrolled Act 1273, authored by Rep. Dale DeVon, R-Granger, created the 22-member task force to study child welfare topics. The law requires the task force to submit two reports in October 2026 and October 2027, but does not specify any areas or subjects that should be studied.

Sen. Andrea Hunley, D-Indianapolis, was hopeful the study committees’ examination of the issues most concerning to families, such as clean water, maternal health and medical debt, would yield some legislation addressing key concerns in the 2026 General Assembly session.

 “We also know that a single study in the interim isn’t going to fix everything,” Hunley said. “But we also know that it can spark the change that is necessary. It can be the momentum builder that we need to make sure that we’ve got the momentum going into session, so that we can have the bipartisan support necessary to pass important legislation that this is the time where that happens.”


Marilyn Odendahl wrote this article for The Indiana Citizen.


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A Pennsylvania nurse is sounding the alarm about proposed cuts to Medicaid funding now in Congress, cuts she said could jeopardize care for her son as well as millions of Americans.

The House version of the budget reconciliation bill would slash federal Medicaid spending by at least $700 billion to fund a tax-cut extension and other Trump administration priorities.

Jennifer K. Graham Partyka, a registered nurse in Northeast Pennsylvania, joined the "Fair Share for Americans" bus tour in Scranton this week. She said Medicaid is a lifeline for her 28-year-old son living with Crohn's disease.

"We were lucky, because when he was very sick, he qualified for Medicaid," Partyka recounted. "He was fully disabled until he started getting the treatments and started getting better. There's a version of that Medicaid called, like, 'Medicaid for working disabled people.'"

Medicaid covers about one in four Pennsylvanians, including 750,000 with disabilities. Partyka pointed out her son, who works full-time, would not be affected by the work requirements Congress wants to add for Medicaid eligibility. It would mean adults without children would need to work or volunteer 80 hours a month to keep their coverage. Republicans are pushing to pass the reconciliation bill by July 4 but debate could delay it.

Partyka emphasized Medicaid is one of the top five sources of payment to every hospital in the nation. With many already struggling to stay open and fully staffed, she thinks cutting Medicaid would also be disastrous for people's access to care.

"My professional experience with Medicaid is that most of the recipients of Medicaid are children," Partyka stressed. "I'm also going to share that 60% of people in nursing homes list Medicaid as their primary payer."

She added voters ultimately have the power to hold lawmakers accountable for the fallout from major budget decisions, noting many congressional seats will be up for grabs in 2026.


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Diabetes diagnoses are climbing, with about 37,000 adults diagnosed in Indiana every year, and doctors caution they are seeing more cases in younger patients.

Diabetes means the body is unable to maintain a healthy blood glucose or blood sugar level. Type 1 is caused by an autoimmune process affecting the pancreatic cells which make insulin. Type 2 diabetes means the body has reduced sensitivity to the insulin it naturally produces.

Dr. Tamara Hannon, pediatric endocrinologist at Indiana University's Riley Hospital for Children, explained why the body's response function changes.

"The pancreas can stop making enough insulin for a number of reasons," Hannon noted. "Could be genetic, the cells get damaged over time by having to work too hard, an infection, high blood fat levels, or just getting exhausted over time."

The Centers for Disease Control and Prevention predicts if the rate of new diagnoses in kids and teens continues to climb, Type 1 diabetes cases would increase by about 65 % and Type 2 by about 700% by the year 2060.

There is no cure for Type 1 diabetes but its progression can be delayed with medication. For the more common Type 2, cell damage can be delayed or even reversed through weight loss, exercise, lifestyle changes and medication.

Hannon pointed out with the epidemic of childhood obesity, younger people are developing diseases traditionally diagnosed in adults, in part because of their food and beverage choices and other environmental factors. She added research shows sugary drinks in particular increase the risk for not only Type 2 diabetes, but liver disease and cardiovascular disorders.

"If you think about when you drink sugar versus when you eat foods that contain sugar, there's a different way that is absorbed and metabolized," Hannon observed. "If you drink something that's sugary, the sugar goes into your bloodstream quite quickly."

Hannon stressed the body has to mount a quick metabolic response to a rapid sugar download but the natural sugars in whole foods, like fresh produce and certain vegetables, are not absorbed by the body as quickly. According to the American Diabetes Association, 12%, or about 666,000 Hoosiers, are diabetic.


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