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Tribal health officials ‘blinded’ by lack of data

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Health Brief

The Washington Post’s essential guide to health policy news

8 min

Good morning. I’m Jazmin Orozco Rodriguez, a KFF Health News correspondent based in Elko, Nev., a land of sagebrush and mines where the weather this summer has been hot and rainy. Email me about your experiences with health care in rural America at jorozco@kff.org.

Today’s edition: The Supreme Court gave the Biden administration the green light to withhold millions in health-care dollars from Oklahoma for refusing to make abortion referrals. The former governor of New York has agreed to testify publicly before the House panel probing the coronavirus response. But first …

Public health data deserts make it hard to shake health disparities

A strong public health system can make a big difference for those who face stark health disparities. But epidemiologists serving Native American communities, which have some of the nation’s most profound health inequities, say they’re hobbled by state and federal agencies restricting their access to important data.

American Indians and Alaska Natives face life expectancy about 10 years shorter than the national average and, in early 2020, had a covid-19 infection rate 3½ times that of non-Hispanic Whites.

While tribal health leaders have fought for years for better access to data from federal agencies, the pandemic underscored the urgency of making data available to tribes and tribal epidemiology centers.

But even after the public health emergency put a spotlight on the data inequity, tribal public health officials say not much has changed and they still have trouble accessing data on infectious-disease outbreaks, substance use and suicide.

“We’re being blinded,” said Meghan Curry O’Connell, chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation. O’Connell’s work fighting for greater access to data has been highlighted in recent years as the region faces a devastating and ongoing syphilis outbreak.

In 2022, the Government Accountability Office published a report documenting obstacles keeping federal public health information from tribes, including confusion about data-sharing policies, inconsistent processes for requesting information, poor data quality and strict rules for sensitive data on health issues such as substance misuse.

In one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the United States had varying levels of access to covid data from the Centers for Disease Control and Prevention. While all 10 were given case surveillance data that included information on positive cases, hospitalizations and deaths, only six said they also had access to covid vaccination data from the Department of Health and Human Services.

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, forcing some to ask for data as researchers or file public records requests.

HHS officials agreed with all of the recommendations the GAO made as a result of its investigation, and after consulting with tribal leaders, this year published a draft policy outlining the types of data the agency would make available to tribes and tribal epidemiology centers, and establishing expectations for agency staffers about responding to data requests.

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 didn’t address how federal agencies treat tribal governments, which also have a right to their data as sovereign nations.

While HHS continues to work on its policy, Roberts said a strong federal policy on data-use agreements would help tribes’ relationships with state governments, too.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — an independent source of health policy research, polling, and journalism.

In the courts

Supreme Court allows HHS to divert funds over abortion referrals

The Supreme Court cleared the way for the Biden administration to strip millions of health-care dollars from Oklahoma over its refusal to refer pregnant patients to a national hotline that provides information about abortions, The Post’s Ann E. Marimow reports.

The emergency order came with no explanation for the majority’s decision, as is usual in such orders. But it noted that conservative Justices Clarence Thomas, Samuel A. Alito Jr. and Neil M. Gorsuch would have sided with the state.

A closer look: The battle began in 2021 when the Biden administration reversed a Trump-era policy that barred federally funded clinics from referring patients for abortions. The federal health department later began withholding funds from organizations that refused to make referrals, including diverting $4.5 million from Oklahoma’s family planning programs last year.

Oklahoma Attorney General Gentner Drummond (R) challenged the move, arguing that the federal mandate conflicts with the state’s strict abortion ban and illegally adds new conditions to the half-century-old Title X family planning program. But in July, the U.S. Court of Appeals for the 10th Circuit sided with the federal government, allowing the funding cuts to proceed.

Drummond then asked the Supreme Court to intervene, hoping to stop the administration from withholding another year’s worth of funding while the state continues to fight the decision.

On our radar: Oklahoma isn’t alone. The state is one of 12 that initially challenged the administration’s new rules requiring abortion referrals. The U.S. Court of Appeals for the 6th Circuit ruled against the states, partly because the federal government said providers with religious or moral objections wouldn’t be forced to refer patients for abortions. That case is still pending in the lower courts, and the issue could eventually return to the Supreme Court.

On the Hill

Cuomo to testify before House panel on covid response

Former New York governor Andrew M. Cuomo (D) has agreed to testify publicly before the House panel probing the coronavirus response, Chair Brad Wenstrup (R-Ohio) announced.

The details: The hearing set for Sept. 10 will focus on the guidance Cuomo’s administration issued in the early days of the pandemic, which led New York nursing homes and long-term care facilities to admit covid-positive patients.

“Andrew M. Cuomo owes answers to the 15,000 families who lost loved ones in New York’s nursing homes during the covid-19 pandemic,” Wenstrup said in a statement.

Key context: Cuomo’s administration faced criticism over allegations that it downplayed the coronavirus’s true toll among residents. A 2021 report by New York Attorney General Letitia James (D) suggested that covid deaths in these facilities could be twice as high as reported by the state.

Cuomo previously testified behind closed doors for seven hours in June after being subpoenaed, a session that Wenstrup described as “shockingly callous.” The transcript from that testimony, along with interviews with nine former high-ranking Cuomo officials, will drop ahead of next week’s hearing.

The view from Cuomo: Rich Azzopardi, a spokesperson for the former governor, hit back at the panel in a statement, accusing it of “engaging in false political attacks blaming New York for nursing home deaths” despite the state following federal guidance.

Election watch

Harris-Walz campaign launches reproductive rights bus tour

The Harris-Walz campaign kicked off its “Fighting for Reproductive Rights” bus tour yesterday in former president Donald Trump’s home state of Florida, where most abortions are banned after six weeks of pregnancy, The Post’s Mariana Alfaro reports.

Sen. Amy Klobuchar (D-Minn.), a vocal advocate for reproductive rights, and Republican TV personality Ana Navarro joined the launch in Palm Beach, though neither Vice President Kamala Harris nor Minnesota Gov. Tim Walz were in attendance.

Next steps: The tour will make at least 50 more stops this fall in key states. Each event “will emphasize the stark contrast” between the Harris-Walz ticket’s efforts to protect abortion rights and Trump’s successful effort to strike down Roe v. Wade, according to the campaign.

In other health news

  • The National Institute of Allergy and Infectious Diseases has awarded $2.4 million in grants for 10 projects aimed at improving diagnostic tools for congenital and adult syphilis.
  • A review commissioned by the World Health Organization into the potential risks of cellphone radiation has found no connection between cellphone use and brain cancer, The Post’s Rachel Pannett reports.
  • Eli Lilly is suing the Food and Drug Administration to block its decision to classify the company’s obesity medicine, retatrutide, as a drug instead of a biological product, according to Bloomberg Law’s Nyah Phengsitthy.

Health reads

U.S. will still pay at least twice as much after negotiating drug prices (By Deena Beasley | Reuters)

New York Democrats fear abortion rights amendment is faltering (By Nick Reisman | Politico)

A decision on a major policy shift on marijuana won’t come until after the presidential election (By Lindsay Whitehurst and Jennifer Peltz | The Associated Press)

Sugar rush

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