Researchers face funding gap in effort to study long-term health of Maui fire survivors

Plans to enroll hundreds of children this summer in a long-term study on the impacts of the Lahaina wildfires have been put on hold while researchers at the University of Hawaii seek new sources of funding to expand their research.

Launched in January, the Maui Wildfire Exposure Cohort Study is currently tracking the health and social well-being of more than 800 adult fire survivors. Lawmakers had allocated $2.3 million to UH to support the study — and the creation of a comprehensive health registry to track fire survivors — as part of a wildfire appropriations bill that Gov. Josh Green vetoed earlier this month.

Researchers said they were surprised by the veto and did not have a backup plan for how to reach their goal of enrolling 2,000 survivors in what is meant to be a decade-long study.

Community members have been asking for children to be included in the research from the beginning, said Ruben Juarez, a UH professor and one of the lead researchers.

As of now, the team has only a rough understanding of young survivors’ conditions through secondhand anecdotes, mostly provided by parents participating in the study.

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“Our conjecture is that children are actually more vulnerable than adults, especially with lifelong implications,” Juarez said.

The recent funding predicament is just the latest in a series of challenges the team has overcome in its efforts to track the prolonged effects of the Lahaina fire.

The study is being conducted in 10 languages to accommodate participants from communities often underrepresented in medical research. For many fire survivors, the study’s initial survey was the first health assessment of any kind they had received since the disaster last August.

Designing a study that accurately represents Lahaina’s diverse demographics is imperative not only for accurately depicting the health situation in Maui, but also for helping people who have fallen through the cracks in the current support system for fire survivors, researchers said.

‘It Comes Down To Language’

The first comprehensive report from the study was released in May and included surveys and health samples collected from 679 people from Lahaina and Kula.

Native Hawaiian and Pacific Islander, Latino and Filipino participants each accounted for around one-fifth of the entire cohort. Non-Filipino Asian participants, including Japanese, Chinese and Korean, made up around 10% of the respondents, while 30% identified as white.

The first phase of the study showed a high prevalence of mental health issues such as depression and low self-esteem following the fire. The majority of individuals also had an increase in health issues, including elevated blood pressure and respiratory problems.

“And we’re only now starting to see some of the longer-term conditions pop up,” said Alika Maunakea, one of the lead researchers on the project, “like higher rates of mild to severe lung obstruction in participants. About 40% of the cohort has some degree of that.”

To build a cohort representative of the affected population in Maui, Juarez and Maunakea partnered with local grassroots community organizations for translation and interpretation services. Roughly a third of Lahaina residents were foreign-born, nearly double the state average, according to census data.

Language access has been one of the biggest challenges for Maui wildfire survivors, said Veronica Mendoza-Jachowski, co-founder of Roots Reborn, a community partner that specializes in providing legal assistance for undocumented immigrants and Compact of Free Association migrants from Micronesia.

“It comes down to language, and it comes down to, ‘Is there trust?’ Do they trust the people who are trying to recruit them?” Mendoza-Jachowski said.

Roots Reborn promoted the study through word of mouth, text messages, videos and by talking to key community members who would help get the word out on their behalf.

One strategy community partners adopted in promoting MauiWES to non-English-speaking communities was mastering the art of “imperfect” translation.

Mendoza-Jachowski says she wrote things down simply and incorporated lots of slang words into her written promotional messages, which she said would make more sense to her target audience than exact translations.

Michelle Hyman of Tagnawa for Maui, a group contracted to increase Filipino participation in the study, deliberately left some words in English to preserve their original meaning.

“Even words like ‘exposure,’ it’s really hard to translate even just that word,” Hyman said. “To say that ‘you were there’ — it’s not really the correct thing. So we kept that in English.”

When it came time to fill out surveys and consent forms, Tagnawa had interpreters sit with participants and translate questions in lay language, since a lot of the technical terms were kept in English.

“As of right now, a lot of (the translations) are not standardized,” Hyman said. “So a lot of the medical language had to be kept the same.”

Translations can become costly in large-scale studies that require multiple forms of assistance. Support from a single community organization can cost around $10,000 per month, Juarez said.

During the first phase of the study, the team allocated around $700 per participant to pay for participation incentives and to collect urine and saliva samples to determine if survivors were exposed to any contaminants like heavy metals.

Currently, most specimens collected from study participants are stored at the University of Hawaii until researchers can afford to send them out for analysis at Columbia University in New York.

The researchers at MauiWES were able to cut down on some of the translation costs by using AI tools such as ChatGPT to share their key findings in multiple languages. Maunakea, who also speaks Hawaiian, was surprised that they made pretty accurate translations, and so were others from the team who also spoke Tagalog and Spanish.

But lesser-used languages such as Pohnpeian are not supported by programs like ChatGPT.

Youth Impacts Unknown

Since the start of the study, participants have expressed concern about the impact of the fire on their children.

The team planned to collect data about the physical and mental health of young fire survivors through therapist-led conversations and questionnaires in schools.

Understanding the long-term health implications of the fire is especially critical for young people, since contaminants from the wildfire could inflict serious damage on still-developing organs like lungs, Maunakea said.

The team worked with state Rep. Della Au Belatti and Pedro Haro, executive director of the American Lung Association in Hawaii, to introduce a bill in January to appropriate funds for the study and a health registry.

The measure was incorporated into a larger omnibus bill for response and recovery in Lahaina and wildfire prevention statewide that the Legislature approved this spring.

Bellati said that after Green vetoed the bill, his office told lawmakers that many of the items in it could likely be funded through the state’s Major Disaster Relief Fund — something Belatti plans to follow up on through the summer and into next year.

But Juarez, Maunakea and Haro say securing state funding this month was crucial to their efforts.

Fire survivors are relocating to other places and it’s important to start efforts like the registry quickly while it’s still top-of-mind for people, said Haro, whose immediate family lost homes in the fire.

“We don’t have enough funding to be able to do everything that the community has been asking us,” Juarez said.

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This story was originally published by Honolulu Civil Beat and distributed through a partnership with The Associated Press.