Despite mistrust, Native Americans’ participation in vaccine development proves vital

Navajo medicine man Timothy Lewis starts each day with a corn pollen seed offered to the Creator. He is praying for his family and the well-being of the world amid the ongoing coronavirus pandemic.
"I hope we can get back to normal," said Lewis. “I want to see my grandchildren again. I want to hold her and I want to hug her again. "
Lewis is one of 463 Native Americans across the country who have volunteered for one of Pfizer's COVID-19 vaccine trials. This was a pivotal phase 3 study. Both parents were also traditional Navajo healers, and he says they gave him the responsibility to help others whenever possible.
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"My parents would have liked that," said Lewis. “You would have wanted me to do that. And that's why I volunteered. I really want us to get back to who we were [before the pandemic]. "
PHOTO: Timothy Lewis is one of 463 Native Americans across the country who volunteered for the Pfizer COVID-19 Vaccine Study. (ABC)
The virus has devastated the Navajo Nation, which covers an area the size of West Virginia and is home to more than 300,000 enrolled tribesmen. Despite some of the strictest lockdowns and week-long curfews, the communities there are still in an ongoing crisis.
As recently as this week, the Navajo Department of Health reported 272 new cases. With 75 communities continuing to experience uncontrolled transmission of COVID-19, a total of 21,833 cases have been reported across the Navajo nation, with over 760 deaths since March.
Several factors have contributed to the spread of the virus in the Navajo nation, including an abundance of multi-generation homes where people live in small buildings with their extended families.
According to Dr. Loretta Christensen, chief medical officer for the Indian health service in the Navajo region, there are only 13 grocery stores on the 27,000 square mile reserve.
PHOTO: Dr. Loretta Christensen is the Chief Medical Officer for Indian Health Services in the Navajo area. (ABC)
"We've been working with the John Hopkins Center for Indians here in Navajo for a while," she said. "What we've found through multiple vaccine trials, there are often vaccines that are better suited to our populations, to which we are more responsive, and to which we are better immunized."
MORE: Navajo Nation Hospitals at "Breakpoint"
Because of people like Lewis, Pfizer's COVID-19 vaccine investigation included data on Native American responses to the vaccine.
“You volunteered. So you are a pioneer, ”said Jonathan Nez, President of the Navajo Nation. "Based on the data currently available, this shows that this vaccine has no negative, negative effects on Native American people."
Christensen develops the Navajo Nation's vaccination schedule and, early in the process, helps distribute and administer the shot to health care workers such as rescue workers, doctors, and medicine men.
PHOTO: President of the Navajo Nation Jonathan Nez (ABC)
The Navajo Nation has received 3,900 Pfizer vaccine doses to date and nearly 8,000 this week from Moderna.
Dr. Michelle Tom, the only Navajo paramedic at Winslow Indian Health Care Center in Arizona, received her vaccine this week.
"It's finally the day I imagined," Tom told ABC News. "It couldn't have come soon enough. It's a big deal for the Navajo, for the Native Americans, and for all of the families that have been hit so hard."
PHOTO: Dr. Michelle Tom, the only Navajo paramedic at Winslow Indian Health Care Center in Arizona, received her vaccine this week. (Michelle Tom)
At the height of the crisis, Tom left her family and moved to an apartment an hour away to minimize the risk of exposing the group of people she is trying to save.
ABC News spoke to Tom in May when the Navajo Nation had the highest per capita infection rate in the country.
PHOTO: Dr. Michelle Tom, the only Navajo paramedic at Winslow Indian Health Care Center in Arizona, received her vaccine this week. (Michelle Tom)
"My job is immensely difficult because I have such a connection with my people and my country - my ancestors and my grandparents," she said at the time. “And to bring me here today… Our elders are our teachers, protectors. They contain all the key elements that we need to have a strong sense of identity. "
Gwen Livingston, a nurse from Johns Hopkins American Indian Health, worked with Pfizer and partner BioNTech on their COVID-19 vaccine trials in the Navajo Nation in a second, deadlier wave.
"We tried, we educated, we did what we can as far as social distancing was concerned, wore our masks, refurbished, did what we can," she said. “Then our numbers will rise again. So yes, something has to happen. And this vaccine is being launched, and this is just another resource. This is just another tool. This is something we need in order to fight this virus. "
For Livingston, the number of viruses was personal. She comes from the Navajo Nation and the Khapo Owingeh, a Santa Clara Pueblo in New Mexico.
MORE: How a young activist advocates COVID-19 relief for her Navajo community
In June, Livingston lost her grandfather to COVID-19 and had to watch her grandmother from a distance as she said goodbye alone.
"She had to explain to her why she couldn't see him, why she couldn't be with him, why we were outside the window and couldn't go into the building to see him - that really hit home and it hit hard. " Livingston said.
"To hear the ache and the ache just by talking to family members or even with patients with COVID-19," she said. "Just the struggle to breathe alone and the questions," What will happen to me? "And there is this fear of," Am I going to die? "
The virus has brought to light the health problems of the generations afflicting the Navajo.
"We have high rates of diabetes, cardiovascular disease, cancer," said Nez. "And as the nation saw during the first wave in April, the Navajo nation was badly hit."
Livingston says that even if someone with high blood pressure and diabetes has asymptomatic COVID-19, "the harm is already happening". It is high blood pressure and diabetes that can cause them to need dialysis.
PHOTO: Gwen Livingston, a Native American health research nurse at Johns Hopkins, has worked with Pfizer-BioNTech COVID-19 on vaccination trials in the Navajo Nation in a second, deadlier wave. (ABC)
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"By the time they get to stage four [chronic kidney disease] they must already be thinking about their dialysis treatment options," she said. "That's the bottom line of these chronic illnesses ... sometimes, in some cases, it's too late."
Despite the participation of indigenous peoples in vaccine trials, there is still deep distrust in the community.
Before the European conquest, Native Americans had never experienced smallpox, measles or the flu. Exposure to "New World" diseases killed nearly 90% of its population.
In the 1860s, the Bureau of Indian Affairs established a series of boarding schools on Indian reservations that separated children from their families.
"It was the whole idea of ​​incorporating Indians into white culture," said Livingston. “It was the whole idea, 'Kill the Indian, save the man. 'And bringing these kids with you, taking them out of their homes, taking them out of their families, taking them of everything they know [and] taking them to schools - that was traumatic too. They were punished for speaking their language or for having anything to do with their culture. "
This intergenerational trauma is exacerbated by a history of forced experimentation with Native Americans.
"In the 1970s, Native American women sterilization was a major traumatic event," Livingston said. "[That] made it very, very difficult for the indigenous people to trust the federal government or even the Indian health service."
Most tribe members say that they are not against research, but rather that they want to do it ethically and with the consent of participants and community members.
In 2002, the Navajo Nation banned genetic research on its territory to prevent unethical medical experiments on Native American people. In 2003, the Havasupai tribe sued Arizona State University for sharing blood samples from a diabetes research project in the 1990s with researchers working on other projects without study participants' consent. The tribe won the case in 2010.
Because of that long story, Lewis said he encountered skepticism when he told his friends and relatives about volunteering for the vaccine trial.
MORE: Navajo Nation ravaged by coronavirus is focused on elections
"They said," Don't do it. "But I wasn't listening because I wanted to help," he said. "I wanted to help my people."
Christensen believes that COVID-19 vaccine makers must be transparent and share the data they have collected in order to build trust with the Navajo community.
"We really need the Native American population to be shown in data and how they are responding to the vaccines," Livingston said. "We really need to look at this so we are better prepared to present this data to the community, and that way, they'll feel more comfortable receiving the vaccine when the time comes."
Acknowledging the trauma inflicted on the community is only half the battle. Livingston said traditional healers and Western health care providers should come together to help local communities with the pandemic.
"[We should] work together to understand drugs and treatments - all of those things - to keep our employees healthy," she said.
"Lewis recognizes the advantage he has in having access to Western medicine and the traditional medicine of his culture." I have two worlds, "he said." I am lucky. "
Nez said he was optimistic that the Navajo community would make it through this as they had survived many diseases, including the 1993 hantavirus outbreak.
"We are resilient," he said. "Remember, our ancestors brought us to this point ... Now it's our turn to fight hard against this virus and to think of our children and grandchildren."
Despite the suspicion, Native American involvement is proving critical in vaccine development, which was originally published on abcnews.go.com

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