Rapid rollout of virus vaccine trials reveals tribal mistrust

FLAGSTAFF, Ariz. (AP) – The news came during a hopeful period on the largest Native American reservation.

Daily coronavirus cases were single digits, down from a spring peak of 238 which made the Navajo Nation a hotspot in the United States. The tribe, wanting to ensure that a COVID-19 vaccine would be effective for its people, said it would welcome Pfizer’s clinical trials on its reservation covering Arizona, New Mexico and Utah.

Right away, members of the tribe accused their government of allowing them to be guinea pigs, pointing to painful times in the past when Native Americans did not consent to medical tests or were not fully briefed on procedures.

A Navajo Nation review panel gave the study faster-than-usual approval after researchers at the Center for American Indian Health at Johns Hopkins University argued for diversity. Without the native volunteers, how would they know if tribal members responded to vaccines the same way as others?

“Unfortunately, Native Americans have been denied the opportunity to participate in these clinical trials because almost all of the study sites are in large urban areas that did not do effective outreach with Native Americans,” said the Dr Laura Hammitt of Johns Hopkins.

About 460 Native Americans have participated in vaccine trials by Pfizer and its German partner BioNTech, including Navajos. Enrollment reflects a growing understanding of the role people of color play in vaccine development and a willingness to deploy them quickly to fight infections among populations that have been disproportionately affected by the virus.

Yet few of the nation’s 574 federally recognized tribes have signed up for the studies, a reluctance often rooted in suspicion and mistrust. Many tribes also require multiple levels of approval for clinical trials, a challenge researchers aren’t always willing to overcome, and states don’t face.

While the vaccines from Pfizer and Moderna Inc. are being rolled out across India, others are under study.

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In the Pacific Northwest, the Lummi Nation and the Nooksack Indian Tribe are planning to participate in a vaccine trial from another company, Novavax Inc. and GlaxoSmithKline.

On the Navajo Nation, Arvena Peshlakai, her husband, Melvin, and their daughter Quortnii volunteered for the Pfizer trials.

Arvena Peshlakai said the rumors were rampant: Navajo people would be injected with the virus and researchers would use plasma from people with COVID-19.

She was assured that this was not happening and let the words of her parents and grandparents guide her: Don’t let our struggles be your struggles, start with our triumphs.

“What else am I supposed to do?” Just sit down and say, “No I don’t trust them” and try something new to see if we can find a breakthrough? »Peshlakai said. “We have to do something, we can’t just wait and hope and pray.”

She overcame her fear of needles to get the doses and tracks her daily well-being on an app. As trial participants, the family may be vaccinated if they were initially given a placebo.

The Pfizer trials among the Navajo and White Mountain Apache tribes recruited 275 people, about 80% of whom are Native Americans, Hammitt said. It wasn’t as much as the researchers had hoped, but she said it was enough to compare immune and antibody responses in native patients to others.

Nationwide vaccine trials are progressing rapidly, which does not always match tribal guidelines on reviewing research proposals.

“It must be done with respect for tribal sovereignty and with the understanding that each individual has truly received informed consent,” said Abigail Echo-Hawk, director of the Urban Indian Health Institute in Seattle.

It has helped that Johns Hopkins has a decades-long history with the Navajo and Apache, including other clinical trials. Hammitt said the Navajo Human Research Review Board was receptive to a rapid review of vaccine trials due to the devastating impact of the pandemic.

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In South Dakota, the Cheyenne River Sioux Tribal Health Committee initially rejected Dr. Jeffrey Henderson’s proposal to try the Novavax vaccine. Henderson, a member of the tribe, was sent to the community to assess support.

He’s hoping to get approval from a newly installed tribal council, but for now he’s considering setting up a mobile unit off-reserve.

“We refuse to do this type of research or any research within the boundaries of a tribe without having the explicit approval of the tribe,” said Henderson.

In Washington state, the Nooksack Tribe is expected to begin recruiting volunteers into the Novavax trials on Monday, said tribe health officer Dr Frank James.

“I expect a slow start, and we have to get a few brave people to be comfortable with that, and then people follow,” he said.

Neighboring Lummi Nation is moving forward with a three-part review and approval process for Novavax trials.

The initial reluctance within the tribe is due to a researcher who took pictures of Lummi children years ago to develop a tool to diagnose fetal alcohol syndrome, but offered no way of doing so. resolve, said Dr Dakotah Lane, executive medical director of the Lummi Tribal. Health clinic.

“I had known before and was certainly aware of the distrust of any kind of research within our community,” Lane said. “But I also knew that the only way out of this pandemic was to have access to vaccines.”

Other stories about the sterilization of Native American women, noted in a 1976 federal report, and military radioactive iodine testing of Alaskan natives have aroused suspicion.

The Havasupai tribe also settled a lawsuit ten years ago that accused scientists at Arizona State University of abusing blood samples intended for diabetes research to study schizophrenia, inbreeding, and blood migration. the ancient population without the permission of the tribe.

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This case came to mind when Annette Brown, a Navajo woman, heard of her tribe’s willingness to participate in COVID-19 vaccine trials.

“There is this historical mistrust of any kind of experimentation,” she said. “It’s just from experience, I don’t know that there are a lot of families that haven’t been affected by some kind of experimentation (or) biological attacks against tribal communities.

Brown has mixed feelings because she was previously involved in a vaccine trial with Johns Hopkins.

It was linked to research that determined that the first generation of bacterial meningitis vaccines were less effective in Navajo and Apache children 6 months and younger, Hammitt said. The disease rate was five to ten times higher in these children than in the general population.

Researchers and doctors in Native American communities also found that standard doses of drugs like blood thinners were not always the best for tribe members.

For Marcia O’Leary, participating in a study that indirectly found that HPV vaccines do not protect against a strain that is one of the leading causes of cancer in Native American women of the Great Plains shows the importance of having more indigenous researchers and to be involved in clinical trials. .

“We can’t wait for this to reverberate,” said O’Leary, director of Missouri Breaks, a small Native American-owned research group on the Cheyenne River Sioux Reservation. “It seems that in Indian Country we keep chasing the health ball and we never get ahead.

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Fonseca is a member of the AP Race and Ethnicity team. Follow her on Twitter at https://twitter.com/FonsecaAP.

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