This text is a part of “Improvements In: RSV,” an editorially unbiased particular report that was produced with monetary assist from MSD, Sanofi and AstraZeneca.
Abigail Echo-Hawk believes within the energy of storytelling. An Indigenous public well being professional, she creates highly effective narratives by merging rigorous analysis with cultural perception—and makes use of these tales to tell coverage and enhance well being outcomes in Native communities within the U.S.
“I used to be educated as a scientist, and we’re typically informed in Western science that we simply use the numbers, use the statistics, however these statistics don’t inform the entire story,” says Echo-Hawk, government vp of the Seattle Indian Well being Board and director of its information and analysis division, the City Indian Well being Institute (UIHI). “As Native folks, we now have at all times utilized story for passing down oral traditions, whether or not it was for our medicines or realizing the best way to chart our method throughout the oceans or throughout the plains to comply with the buffalo.”
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Echo-Hawk says tribes are utilizing their tales to drive highly effective, culturally grounded options to well being crises of their communities, together with respiratory syncytial virus (RSV), a respiratory sickness that disproportionately impacts American Indian and Alaska Native kids, significantly infants.
For Native households, RSV isn’t simply one other childhood sickness; it’s a public well being disaster. In accordance with a research , American Indian and Alaska Native infants underneath six months outdated in Alaska’s Yukon-Kuskokwim Delta confronted RSV hospitalization charges of 132 per 1,000 every year in the course of the 2019–2020 RSV season, whereas these in Chinle, Ariz., positioned on the Navajo reservation, had been hospitalized at a fee of 83 per 1,000. These charges are among the many highest on the earth. In distinction, the common RSV hospitalization fee for all U.S. infants underneath six months outdated is 26 per 1,000.
At UIHI, Echo-Hawk and her crew have organized community-based public schooling campaigns to advertise RSV prevention measures, akin to monoclonal antibody injections, for American Indian and Alaska Native infants and toddlers.
A member of the Pawnee Nation of Oklahoma, Echo-Hawk’s work spans a variety of Indigenous public well being and issues of safety, together with maternal and little one well being disparities, the consequences of the COVID pandemic and the disproportionately excessive charges of Lacking and Murdered Indigenous Individuals (MMIP).
She has additionally written extensively on what she calls “information genocide”—the systematic erasure or misrepresentation of Indigenous folks in well being information—and fights to make sure that their communities are accounted for within the statistics that form public well being selections and decide how important funding will get allotted.
Scientific American spoke with Echo-Hawk about her work on RSV in Native American communities within the U.S., the function of UIHI in addressing Indigenous well being and the ways in which culturally tailor-made public well being methods can save lives.
[An edited transcript of the interview follows.]
How does UIHI differ from different public well being organizations?
As a tribal epidemiology middle, we see the impacts of the colonial determinants which have triggered well being disparities among the many tribes, however we additionally know that our survival is a results of the energy and cultural well-being of our communities.
We’re a gaggle of researchers and epidemiologist evaluators [who investigate efficacy of public health programs] using essentially the most rigorous Western science with a few of the finest coaching within the nation. We’re additionally rooted in cultural worth programs, and every little thing we do is for the love of our folks—not as a result of we are able to publish one thing. We’re right here for the folks, which suggests our dedication to the cultural values isn’t simply one thing we are saying, it’s one thing we dwell, and we’re going to do no matter it takes to make sure the well-being of our communities.
What introduced RSV to your consideration as a public well being precedence?
After I first got here on at UIHI in 2016, RSV was one thing that was instantly dropped at my consideration. Beginning in late 2019, early 2020, we had been seeing will increase in transmissions and hospitalizations impacting our infants and our elders. And it’s our accountability, from a cultural perspective, to make sure their well being and well-being as a result of I see them as my family.
So we started to work throughout Indian Nation with different organizations to establish the place there have been alternatives for public consciousness and RSV. The place was there good work happening? The place did folks want assets? How do we offer the assist to get people the data that they wanted round RSV?
How would you describe the burden of RSV in Native communities?
Our kids and our elders usually tend to contract RSV, and in consequence, they’re additionally extra prone to find yourself within the hospital. Meaning mother and father and caregivers should take time without work work, and that impacts them economically. They might not have entry to an Indian Well being Service hospital as a result of there aren’t very many. So after they go into a bigger hospital system, that’s a price to their tribes, who should do every little thing they will to assist pay for these hospital stays.
Native folks have been harmed as a direct results of the colonial insurance policies of reservations, the underfunding of the Indian Well being Service, the shortage of entry to PPE [masks and other protective equipment] and now, in some areas, the concentrating on of the Native neighborhood to extend vaccine hesitancy. So our infants find yourself within the hospital with RSV.
A monoclonal antibody for infants and a maternal vaccine to assist forestall extreme RSV in infants grew to become out there in 2023, as did vaccines for older adults. What does equitable entry appear like for Native households?
There haven’t been sufficient efforts to make sure equitable entry for Native folks. That may imply that American Indian and Alaskan Native kids and elders are put to the highest of the listing and prioritized for entry to those medication, and [it includes efforts to ensure that] the suitable public well being data is shared on these vaccines.
Below the earlier administration, we had a grant from the [Centers for Disease Control and Prevention] to supply vaccine data. We should not have that anymore. The Trump administration ended it, so we’ve really seen a lower in what could be an equity-based effort. With out our neighborhood getting that data, how are they going to make that call?
We already know that in rural areas, there’s a scarcity of entry to not solely pediatric [hospitals] however any form of hospital, so, due to the funding cuts, we’re going to see that develop much more.
Given the historical past of epidemics and infectious illness in Indian Nation, how do you tackle skepticism or misinformation about these RSV preventatives amongst neighborhood members?
One of many issues we proceed to see are the assaults on vaccines from the antivax crowd and what they see because the potential threat versus the advantages of vaccines. We noticed an uptick in Indian Nation on vaccine hesitancy, and we really noticed the concentrating on of Native folks by antivax folks, which decreased belief in these very well-researched vaccines that maintain nice profit for American Indians and Alaska Natives.
We’ve additionally seen a lower total in childhood vaccinations in tribal communities since 2020. This can be a deep concern to me as a tribal member and because the director of a company that’s tasked with getting the suitable scientific and cultural data out to our communities as a result of these are the family and household and neighborhood that I really like.
One of many issues we proceed to message is that once we maintain ourselves, we’re taking good care of others. And we wish to make it possible for our kids and our elders get the suitable vaccinations in order that in the event that they had been to contract RSV, they’d be at much less threat for extreme signs. It simply protects our neighborhood total.
In the course of the peak of the COVID pandemic, tribes led the way in which in nationwide public well being initiatives due to their function in testing and deploying vaccines at their well being services throughout the nation, not just for their very own tribal members but additionally for most people.
We had been the best within the nation, I’d say, possibly even on the earth, with the COVID vaccines. And so it’s been disappointing to see that fall off as this assault on vaccinations is going on on the highest ranges. Vaccine hesitancy isn’t going to have the identical influence within the white, non-Hispanic neighborhood, who aren’t dwelling in overcrowded conditions, who’ve entry to scrub scorching water to clean their palms and who’ve entry to PPE, akin to masks, after they’re not feeling properly. Whereas within the Native neighborhood, we’re going to see folks die.
How has UIHI labored to shut information gaps?
We’re at all times underfunded as a result of we’re at all times undercounted. “Knowledge genocide” is the elimination of American Indians and Alaska Native folks within the information that immediately ends in the shortage of assets that we’re due for high quality well being care and entry to issues like vaccines.
Knowledge genocide is immediately tied to the underfunding of the Indian Well being Service, so our persons are extra probably than some other ethnic group to be racially misclassified within the information. When Congress will get the numbers on the influence of, say, RSV or flu, our numbers are reported a lot decrease than what they really are. So we don’t get the right allocation of assets, and there are occasions the place we are able to’t present the influence of RSV within the Native neighborhood—which we all know is disproportionately excessive.
Because of unhealthy information, the preliminary cash that got here from the [Coronavirus Aid, Relief, and Economic Security] Act throughout COVID was a misallocation for Indian Nation as a result of the info [Congress] used had been so defective. So that’s the direct influence of not having the right information.
We’re working to coach and inform members of Congress in order that they’re together with these information of their payments, and we’ve seen vital success.
You stated that storytelling is a important a part of your work. Why is that?
Story connects to humanity. Story creates which means. The info are a part of it however can by no means be all of it. We’ve got been in a position to create which means that not solely connects with Indigenous peoples however can also be, I imagine, turning into the usual of public well being typically as a result of the entire world is ready for a narrative. They wish to connect with the humanity, and once we do this, we’re in a position to drive vital change.
For instance, in 2021 I had been requested to testify in entrance of the Well being, Training, Labor and Pensions Committee within the U.S. Senate to speak about well being fairness. I made a decision this was the chance to inform the story of what was occurring round COVID in Indian Nation. I offered a report that informed my private tales, and people from throughout the neighborhood, of people that had been dying—individuals who sat in vehicles exterior of hospitals whereas their family died inside with out them being current.
I informed the story of my very own cousin, who handed away as a result of there have been no ventilators out there within the hospital the place he was a affected person. And in sharing these tales, Congress was in a position to really feel the influence of people, households and communities who had been immediately struggling. That has been broadly cited throughout academia and to neighborhood members. Out of nowhere, there was a tribal group in Michigan who put up billboards throughout the state to encourage their folks to report their race and ethnicity due to the facility of that storytelling.
So once we carry the tales of the family and of the communities which might be tied to these information, we transfer their hearts, and we transfer them into motion.
