“There’s so many of us here, yet we know so little,” said Hamad, who interns at the Oakland County, Michigan, health department’s data division. “There needs to be change.”

Filling in gaps

Abuelezam, who studies maternal and infant health outcomes among MENA people in Massachusetts, is among a handful of researchers in the U.S. who are trying to fill in gaps in MENA health data.

Her research on Massachusetts mothers has found, for example, that Black Arab mothers had higher odds of preterm birth and low birthweight than Arab mothers classified as white, while Arab mothers were more likely to suffer gestational diabetes than white mothers.

One study found that from the beginning of the pandemic through July 2021, about 17% of Arab Americans in Michigan tested positive for COVID-19 compared with 11% of Hispanic people, 9.8% of Black people and 7.5% of white people.

Similarly, researchers who study aging and Alzheimer’s and related dementias found that confusion and memory issues, which can be early symptoms of the diseases, were found among 17% of MENA immigrants, compared with 9.6% of U.S.-born white people.

The change in categories only applies to federal agencies, not state governments, said Rima Meroudeh, director of the National Network for Arab American Communities. However, the official forms used by states, health agencies and school systems typically mirror the categories used by the census, and the change provides “something much more concrete as we advocate at the state level because they want interoperability between state and federal data,” she said.

Awad, the University of Michigan psychologist, studies mental health and the influence of discrimination in the MENA community. She said the change will help her illuminate social determinants of health, such as housing and environment, income, access to resources, health care and transportation, as well as trauma experiences. Awad and other researchers also are interested in exploring the prevalence of health conditions such as asthma and cardiovascular disease in MENA communities.

“A group of us have been working for years advocating for this box,” Awad said. It’s “been long overdue, and finally, we are going to be able to collect data to truly delve into some unanswered questions. We know there are disparities, but we don’t actually truly understand the extent because there hasn’t been systematic data collection.”

The health data that schools collect also is skewed, said Matt Jaber Stiffler, who co-founded the Center for Arab Narratives, part of the Arab Community Center for Economic and Social Services, or ACCESS. For example, Stiffler said, Arab children are the majority of K-12 students in Dearborn, Michigan, but state data identifies them as white.

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