Plans to enroll hundreds of children in a long-term study of the effects of the Lahaina wildfires this summer have been put on hold while University of Hawaii researchers look for new funding sources to expand the study.
The Maui Wildfire Victim Cohort Study, launched in January, is now tracking the health and social well-being of more than 800 adult fire survivors. Lawmakers had allocated $2.3 million to the University of Hawaii to support the study and the creation of a comprehensive health registry to track fire survivors as part of a wildfire budget bill that Gov. Josh Green vetoed earlier this month.
The researchers were surprised by the veto and said they had no alternative plan to meet their goal of enrolling 2,000 survivors in the 10-year study.
Ruben Juarez, a professor at the University of Hawaii and one of the lead researchers, said that from the beginning, community members had been pushing for children to be included in the study.
For now, the team has only a cursory understanding of the plight of young survivors, mainly through secondhand anecdotes from parents taking part in the study.
“Our guess is that children are more vulnerable than adults, especially when it comes to lifelong effects,” Juarez said.
The recent funding woes are just the latest in a series of challenges the team has overcome in its efforts to track the long-term effects of the Lahaina fires.
The survey is being conducted in 10 languages to reach participants from communities often underrepresented in medical research. For many fire survivors, the first part of the study was the first medical check-up they had since the disaster last August.
Designing a study that accurately represents Lahaina’s diverse demographics is essential not only to paint an accurate picture of Maui’s health, but also to help those who fall through the gaps in the current support system for fire survivors, the researchers said.
“It all comes down to language.”
The study’s first comprehensive report was released in May and included questionnaire surveys and health samples collected from 679 people in Lahaina and Kula.
Native Hawaiian/Pacific Islander, Latino, and Filipino participants each made up about one-fifth of the total participants. Non-Filipino Asian participants, including Japanese, Chinese, and Korean, made up about 10% of respondents, and 30% self-identified as white.
The first phase of the study found that mental health problems such as depression and low self-esteem were widespread after the fires, while a majority of people also experienced increased health problems such as high blood pressure and respiratory diseases.
“And it’s only now that we’re starting to see some of the long-term symptoms emerge, including a higher incidence of mild to severe pulmonary obstruction in participants,” said Alika Mauna Kea, one of the project’s principal investigators. “About 40 percent of participants had some degree of pulmonary obstruction.”
To create a constellation that represents victims on Maui, Juarez, and Mauna Kea, the organization partnered with local grassroots community organizations to provide translation and interpretation services. According to census data, roughly one-third of Lahaina residents are foreign-born, nearly double the state average.
Language access has been one of the biggest challenges for survivors of the Maui wildfires, said Veronica Mendoza Yakowski, co-founder of Roots Reborn, a community partner group that specializes in providing legal assistance to undocumented and Compact migrants from Micronesia.
“It comes down to the language and the question of, ‘Do we have trust? Do they trust the people that are trying to recruit them?” Mendoza-Yakowski said.
Roots Reborn promoted the study through word of mouth, text messages, videos, and through discussions with key community members who helped spread the word on their behalf.
One strategy employed by community partners to promote MauiWES to non-English-speaking communities was to master the art of “imperfect” translation.
Mendoza-Yacowski said he wrote succinctly and included a lot of slang in the written promotional messages, which he believes will convey more meaning to his target audience than an exact translation.
Michelle Hyman of Tagnawa for Maui, the group contracted to increase Filipino participation in the survey, said she intentionally left some words in English to preserve the original meaning.
“Even a word like ‘exposure’ is really hard to translate,” Hyman said. “To say ‘was there’ is not really the right way to say it, so we just kept it in English.”
When it came time to fill out questionnaires and consent forms, much of the technical terminology was still in English, so Tagnawa had an interpreter sit next to the participants and translate the questions into layman’s language.
“Right now, a lot of the translations aren’t standardized,” Hyman says, “so we’ve had to leave a lot of medical terminology alone.”
Larger studies that require multiple forms of support can be costly to translate: Support from a single community organization could cost about $10,000 a month, Juarez said.
For the first phase of the study, the team allocated about $700 per participant to pay a participation stipend and to collect urine and saliva samples to determine whether survivors had been exposed to heavy metals and other contaminants.
Currently, most of the samples taken from the study participants are being stored at the University of Hawaii until researchers can send them to Columbia University in New York for analysis.
MauiWES researchers were able to cut some of their translation costs by using AI tools like ChatGPT to share key findings in multiple languages. Mauna Kea, who also speaks Hawaiian, was amazed at how accurate the translations were, as were other members of her team who also speak Tagalog and Spanish.
However, lesser used languages such as Pohnpeian are not supported by programs like ChatGPT.
The impact on young people is unclear
Since the study began, participants have expressed concern about the impact of fires on children.
The research team planned to collect data on the mental and physical health of young people who survived the fires through therapist-led conversations and questionnaires at school.
Mauna Kea said understanding the long-term health effects of fires is especially important for young people because pollutants from wildfires can cause severe damage to developing organs such as the lungs.
The research team worked with Hawaii State Assembly Member Della O. Verratti and Hawaii State Executive Director of the American Lung Association, Pedro Haro, to introduce legislation in January that would allocate funding for the study and health registry.
The measure was incorporated into a larger omnibus bill approved by the state Legislature this spring for disaster response and recovery in Lahaina and wildfire prevention statewide.
Mr. Verratti said his office told lawmakers after Ms. Greene vetoed the bill that many of the items in it could likely be funded through the state’s Major Disaster Relief Fund, an issue he plans to follow up on over the summer and into next year.
But Juarez, Mauna Kea and Haro say securing state funding this month was crucial to their efforts.
Haro, who lost his home in the fire, said fire survivors have relocated elsewhere and it’s important to start an initiative like the registry quickly while interest is still high.
“We don’t have the funds to respond to everything the community is asking for,” Juarez said.
Civil Beat’s community health coverage is supported by the Atherton Family Foundation, Swayne Family Fund of Hawaii Community Foundation, Cooke Foundation and Papa Ola Lokahi.
Civil Beat’s Maui County coverage is supported in part by a grant from the Nuestro Futuro Foundation.
