Mary Annette Pember
Indian Country Today
Fear, mistrust and trauma over unethical medical experiments of the past are alive and well in Indian Country.
This sordid history, combined with the country’s current divisive political and racial climate, has created a perfect storm of suspicion and uncertainty surrounding the race to find a vaccine for the COVID-19 virus.
Navajo and Lummi government leaders recently came face-to-face with that reality when they announced their tribes would be participating in COVID-19 vaccine trials 一 their triumphant social media announcements were quickly met with outrage and suspicion from tribal citizens.
Although the Navajo Nation is located in the Southwest and the Lummi Nation is located in the Pacific Northwest, comments from both communities were remarkably similar, accusing officials of politicizing the health crisis.
Leadership from both communities emphasized that the trials were voluntary. Citizens, however, were having none of it.
“Why are you making us the guinea pigs?” “It’s a rushed experiment!” “Our government leaders should be the first ones to take the vaccine!” “I ain’t falling for it!” “Better to rely on our traditional medicine.”
Christine Ami, Diné, a faculty member of the Social and Behavioral Sciences Department at Diné College, said tribal government leaders have forgotten the fraught history of outside research and covert medical procedures conducted on Indigenous peoples.
In the 1990s, Arizona State University oversaw a DNA study among the Havasupai tribe in which members’ blood samples were used to conduct unauthorized studies that opposed traditional teachings. The original study was billed as a means to provide information on members’ high rate of diabetes. The university eventually agreed to pay the tribe $700,000 as settlement to a lawsuit brought by the Havasupai.
In the 1970s, the comptroller general of the United States reported findings of poorly conducted medical research by the Indian Health Service on the control of trachoma, a devastating eye disease, as well as examples of sterilization performed on Native women without consent.
During the 1950s, the Air Force exposed Alaska Natives to radiation without their consent as part of thyroid research. In the 1940s, First Nation children were subjected to nutrition experiments in Canada’s Indian residential schools in Kenora where children were fed starvation diets.
Failing to acknowledge the painful past and its impact on Native Americans’ abilities to trust tribal or mainstream government leadership is a mistake, said Freddie Lane, Lummi tribal council member.
“Historical trauma over these past wrongs is embedded in the DNA for some of our people;
we need to remember that our communities have survived TB and smallpox, and a long history of lies and wrongdoing by the federal government,” Lane said.
After what he described as a disastrous announcement of the phase 3 AstraZeneca vaccine trial overseen by the University of Washington, the Lummi government is teaming up with the tribe’s health care and cultural leadership to respond to citizen’s concerns and questions.
The AstraZeneca phase 3 trials have been halted in the U.S. after a participant in England developed a serious adverse reaction. Although researchers are investigating the reaction before moving forward, the company’s lack of transparency over the reaction has drawn criticism.
After gathering questions and concerns from tribal citizens, the Lummi tribe posted a recording of a Zoom conference on YouTube Thursday in which health care and cultural leaders responded. According to Dr. Dakotah Lane, health director of the Lummi Nation, there have been 60 cases of COVID-19 among the roughly 2,500 enrolled tribal citizens who live on the reservation. No virus related deaths have been recorded so far. Lane is an enrolled citizen of the Lummi Nation.
The tribe’s total population is around 5,000, Lane said. Citizens of the nearby Nooksack Tribe can also participate in the trial.
Navajo Nation President Jonathan Nez announced on Sept. 11 via his Facebook page and again on Sept. 14 during a virtual town hall meeting that the tribe is participating in a Pfizer-BioNTech COVID-19 phase 3 vaccine trial on a volunteer basis. The trial will be overseen by Johns Hopkins Center for American Indian Health.
The Navajo Nation has been hit especially hard with nearly 10,000 positive cases and 530 deaths.
Nez and Vice President Myron Lizer reiterated several times during Monday’s town hall meeting that the trials are voluntary and that the study has been approved by the Navajo Department of Health, the Indian Health Service and the Navajo Nation’s Human Research Review board. The board was created in 1996 to evaluate research targeting Navajo citizens in order to ensure the work is done ethically and for the benefit of the tribe.
Nez and Lizer were clearly piqued by the onslaught of comments and questions.
“We’re not forcing people (to participate) if they don’t want to,” Nez said during Monday’s town hall. “If you don’t want to do it, don’t comment.”
Not so, said Ami.
“We have to be able to question, not just outside entities, but also our government,” she said.
Ami said she is not opposed to research but wants to know more about how community consent for the trial was obtained: Were traditional medicine people consulted? What are the possibly dangerous consequences of the research, both biologically and culturally? And how is paying participants from a socio-economically disadvantaged population considered voluntary?
“Instead, when I and the public raise concerns and questions about the vaccine trials, we are admonished by government leadership,” she said.
After Navajo leadership learned that Ami had spoken to Indian Country Today about the trials, her comments on the president’s and vice president’s public Facebook pages were deleted and she was banned from making further comments.
Ami accused Nez and Lizer of unnecessarily politicizing the vaccine trials.
Nez, Lizer and members of the Navajo Nation Human Research Review Board did not respond to phone calls and emails seeking comment.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, an agency overseen by the National Institutes of Health, will appear at the Monday morning town hall meeting, according to Nez’s and Lizer’s Facebook pages.
The National Institutes of Health responded to requests for an interview with Fauci, but he was not available for comment.
AstraZeneca, Pfizer and Moderna are currently conducting phase 3 COVID-19 vaccine trials in the U.S.
The New York Times published a Coronavirus Vaccine Tracker that offers detailed explanations of the number of vaccines under consideration, the research process and the status of current trials.
According to the Vaccine Tracker, a phase 3 efficacy trial, such as those at the Lummi and Navajo Nations, are preceded by preclinical testing in which the vaccine is first tested on animals. If it produces a safe immune response, the vaccine moves to phase 1 trials in which a small number of people receive it. If the vaccine stimulates the immune systems in those people, the testing moves on to phase 2 expanded trials.
If the trials prove to be safe and stimulate the immune system, the vaccine then moves on to phase 3 trials. During this phase, scientists give the vaccine as well as a placebo to thousands of people. Phase 3 trials, according to the Times, determine if the vaccine actually protects people against the virus. It’s important that the final trial be large and diverse enough to show evidence of rare side effects that may have been missed during earlier studies.
In a cruel paradox, Native Americans and other people of color, who are often most vulnerable to diseases like COVID-19, are seldom included in clinical trials. According to ProPublica, 64.5 percent of drug trials analyzed during the investigation failed to report any Native American participants. For instance, although Native people are at higher risk for colorectal cancer than either Asian or White people, not a single Native American was included in trials for the drug Lonsur used for the treatment of the cancer.
“If we get to the end of these trials and prove that the vaccines can protect White males, we’re not equitably serving the public’s health,” says Laura Hammitt, director of infectious disease programs at the Johns Hopkins Center for American Indian Health, who is overseeing the Pfizer vaccine trials on the Navajo Nation.
“Since many of the vaccine trials are not being conducted in places where Native Americans live, they are effectively being denied the opportunity to participate,” she said.
There have been past examples of varying levels of effectiveness of drugs among Native Americans.
Hammitt noted that the drug warfarin, commonly used as a blood thinner to reduce the danger of stroke or heart attack, needs to be given at a lower dose for Native Americans versus the general population.
Social determinants such as lack of access to health care and healthy food contribute to high rates of diabetes, cancer and heart disease among Native Americans and render many more vulnerable to infectious diseases such as COVID-19, Hammitt said.
Although the trials have been approved by several Navajo health and governmental agencies, Hammitt admitted that discussion with traditional Navajo medicine people was limited. She cited restrictions on in-person meetings as an obstacle.
“There was discussion with elders and individuals and input from the community but no formal discussions with an organization per se,” she says.
Vaccine trials are set to begin in the Navajo Nation this week.
Healthy adult volunteers, ages 18-85, will receive approximately $710 in compensation over the course of their two-year commitment to the trials.
“I think that this is always a fine line to walk between making sure that compensation is neither too little, nor too much or be considered coercive. In research, we certainly don't want participating in a study to cost somebody money. So at a minimum, it needs to be what we would call cost-neutral. But we also recognize that this is a substantial amount of time and inconvenience for travel to the clinic,” Hammitt said.
Communities that participate in the trials will receive vaccines, once determined to be safe, before the rest of the population.
“The distribution of vaccines will be directed by the federal government. It is our understanding, however, that communities that have participated in clinical trials will be priority groups for vaccine distribution,” Hammitt said.
According to Hammitt, blood samples and nasal swabs collected as part of the study will be destroyed once the trial is completed.
“Given the history of what’s happened in tribal communities in the past (related to medical research) you absolutely have to understand and respect viewpoints opposed to the research,” Hammitt says.
Hammitt acknowledged that many people may choose not to volunteer for the trial.
“I think it’s really critical that people approach this cautiously and have the opportunity to inform themselves and ask questions,” she said.
Lummi council member Lane said he hopes to be among the first to participate.
“Death is in the air,” he said. “If doing this will help the tribe, I’m going to do it.”
This article has been updated to include Dr. Dakotah Lane's tribal affiliation.
Mary Annette Pember, citizen of the Red Cliff Ojibwe tribe, is national correspondent for Indian Country Today. On Twitter: @mapember. Based in Cincinnati, Ohio. Pember loves film, books and jingle dress dancing.
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