Invoice pressures CDC to provide Native People higher entry to federal well being knowledge
PHOENIX – A measure passed by the US House aims to remove obstacles Indians face in accessing public health data. Proponents say this is key to getting a clearer picture of how COVID-19 and other diseases disproportionately affect strains.
According to experts, Native Americans have been denied access to some state and federal health data for years, and the pandemic has further exposed this longstanding problem.
“I feel like I’ve been shouting this from the rooftops for 15 years,” said Abigail Echo-Hawk, director of the Urban Indian Health Institute, a tribal epidemiology center that serves Indians who live on reservations, about 70% the population .
Echo-Hawk only pointed to incomplete or missing data related to the pandemic as just one example.
“I know my people are dying and getting sick, and it’s not recognized because it’s not in the data,” she said.
The Tribal Health Data Improvement Act is sponsored by Rep. Tom O’Halleran, D-Sedona, along with Democrats and Republicans from other states with large Native American populations.
The bill reiterates that tribal health authorities have the right to access public health data. The US Department of Health would have to give the tribes, the Indian Health Service and the tribal epidemiology centers direct access to such data.
In addition, the Centers for Disease Control and Prevention with Strains and Epidemiology Centers would need to work together to improve the accuracy of health data.
The measure was passed on September 29th and is pending in the Senate’s Indian Affairs Committee.
“This legislation directly addresses shortcomings that have hampered the Indian country’s response to COVID-19,” O’Halleran said last month during a committee hearing on the bill. “This is an important step in ensuring tribal communities can respond to public health challenges, not just COVID-19.”
The Urban Indian Health Institute in Seattle is one of 12 tribal epidemiology centers in the United States whose job it is to educate health policy in Indian communities based primarily on data collected by states and the federal government.
Incomplete or missing data makes strategic decisions about where and how to focus resources, especially amid the pandemic, said Stacy Bohlen, CEO of the National Indian Health Board.
“If you can’t measure it, you can’t manage it,” said Bohlen. “You don’t know the incidents and the prevalence, you don’t know how to get the right number of doctors and the right number of ventilators.”
Vanesscia Cresci, interim director of the California Tribal Epidemiology Center, said her organization had a history of difficulty accessing federal health data. She noticed that there are 109 state-approved tribes living in California, so it’s important that tribal health officials can analyze data in ways that are unique to them.
“(It) enables us to tell our own story about how COVID is affecting California’s tribal communities,” Cresci said.
Under the Affordable Care Act of 2010, Congress approved India’s Health Care Improvement Act, which established tribal epidemiology centers as public health agencies independent of tribal governments. That is, they retain the same legal rights to federal data as states or counties.
A 2015 CDC document re-affirmed that these centers were public health authorities and specifically stated that they were even entitled to proprietary health information.
But both Echo-Hawk and Bohlen said the CDC has consistently withheld data from the centers, citing federal health laws.
“So they wrote a letter saying we should have access to the data, but they still need to operationalize that,” said Echo-Hawk.
“It seems to be a more paternalistic approach to tribal nations and tribal epicentres to cite HIPAA as a reason,” said Bohlen.
The 2015 document also points to inconsistent relationships between the tribal epidemiology centers and states. States are also required to share public health data with tribal nations and the centers, but Echo-Hawk said these relationships are very different.
“Some will do nothing,” she said, “and others work hand in hand.”
Neither HHS nor the CDC responded to requests for an interview.
When CDC director Robert Redfield urged the data sharing at a hearing in June, he vowed the issues would be fixed.
“We are determined to correct this for all tribes,” he said. “One of the keys … is to make sure we have secure data systems in place to transport data. … As soon as this is done to ensure the security of the data, it will be transferred. “
In July, 26 members of Congress sent a letter to Redfield and HHS Secretary Alex Azar for more information on what the agencies were doing to ensure tribal epidemiology centers had access to vital information.
“HHS and CDC must work to completely remove public health barriers to indigenous communities, starting with ensuring (the centers) have access to legally guaranteed disease surveillance data,” the letter said.
Problems with accurate dates aren’t unique to the COVID-19 pandemic. According to experts, Native American birth records and records have been skewed for years. For example, a 2019 study in Oklahoma found that nearly 4,000 Native Americans were misrecognized over a five-year period as just another race on death certificates.
“It is a very common saying in the Indian country that we are born Indian and die white because we are classified that way on death certificates,” Echo-Hawk said.
This inhibits research into how certain diseases, including cancer, diabetes, and kidney disease, affect mortality in these communities.
Health care providers also often neglect to record a patient’s race and ethnicity. CDC data, which suggests that Alaskan Indians and natives of Alaska are 3.5 times more likely to contract COVID-19 than whites, includes information from just 23 states. That’s because only these states had racial and ethnicity data for at least 70% of COVID patients.
Echo-Hawk said this ongoing problem “effectively hides the disproportionate effects of COVID-19 on our communities”.
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