Census change will lead to more data on the health of Middle Eastern and North African people in the US. •Virginia Mercury

Before the successful, healthy birth of her son, recalls Germine Awad – an Egyptian American and psychologist at the University of Michigan – doctors told her that her hormone levels were too high and that her pregnancy was in jeopardy. “They don’t know us,” her mother reassured her.

Iyman Hamad, a Palestinian-American public health student at Wayne State University in Detroit, had to search online to find out which race or ethnicity box to check at the doctor’s office and on school forms.

And Itedal Shalabi, who runs an Arab-American family services center in the Chicago area and is also Palestinian, said misinformation and hesitancy about COVID-19 vaccines is rampant in her community. Because Arab Americans were considered white in the absence of a category for them, provincial funding for outreach to minority communities was delayed, likely resulting in preventable deaths, she said.

“So many Arab Americans have died during that time, especially the elderly,” she said. “By the time we got the funding, we had so much work to do to catch up, while other (minority) communities took advantage of this opportunity.”

For decades, American residents with heritage from the Middle East and North Africa, known internationally as the MENA region, have been classified as white by the government. The grouping masked differences in income, health, housing and other important characteristics. And when public health officials don’t have data on COVID-19 deaths or vaccination rates in the MENA community, for example, it’s difficult to effectively distribute dollars and other public resources.

“The lack of specific identification makes it difficult to isolate data,” said epidemiologist Nadia Abuelezam, an associate professor at Boston College Connell School of Nursing and daughter of Palestinian refugees. “Systematically and structurally we were ignored, or our needs were ignored.”

Last month, the federal Office of Management and Budget approved revisions to race and ethnicity data collection at federal agencies, including the addition of a new MENA category to the census. These are the first changes to racial and ethnic categories since 1997. In addition to a combined race/ethnicity category, the changes include a combined checkbox for Hispanic or Latino and the removal of phrases that could be considered pejorative, including “Negro” and “Distant East’. Federal officials have said these revisions will provide more accurate counts and use language “respectful of how people refer to themselves.”

The new federal classification of MENA people is geographical and includes people from Arabic-speaking groups, such as Lebanese, Algerians, Egyptians, Palestinians and Syrians, as well as people from non-Arabic-speaking groups, such as Iranians and Israelis. It also includes ethnic groups living in multiple countries, such as Assyrian, Kurdish and Chaldean people.

The updates will appear with the next census in 2030, but next year federal agencies must submit detailed plans on how they will integrate the new requirements.

Aside from independent studies by academic and nonprofit researchers, little is known about the health of Middle Eastern and North African people in the US. Experts and advocates hope the census change will prompt local and state health agencies to update their own data collection methods to shed light on health inequities and needs.

“There are so many of us here, but we know so little,” said Hamad, an intern in the data division of the Oakland County, Michigan, Health Department. “There has to be a change.”

Filling in gaps

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

For example, her study of Massachusetts mothers found that black Arab mothers were more likely to have preterm birth and low birth weight than Arab mothers classified as white, while Arab mothers were at greater risk for gestational diabetes than white mothers.

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

Similarly, researchers studying aging, Alzheimer’s disease and related dementias found that confusion and memory problems, which can be early symptoms of the diseases, were found in 17% of MENA immigrants, compared to 9.6% of US-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 generally reflect the categories used by the census, and the change provides “something much more concrete as we advocate at the state level as they want interoperability between state and federal data.” ” she said.

A psychologist at the University of Michigan, Awad conducts research on mental health and the impact of discrimination in the MENA community. She said the change will help her highlight social determinants of health, such as housing and environment, income, access to resources, health care and transportation, as well as experiences of trauma. Awad and other researchers are also interested in investigating the prevalence of health conditions such as asthma and cardiovascular disease in MENA communities.

“A group of us have been advocating for this box for years,” Awad said. It is long overdue, and finally we will be able to collect data to really dig into some of the unanswered questions. We know there are differences, but we don’t really understand the extent of them because there has been no systematic data collection.”

The health data that schools collect is also skewed, says Matt Jaber Stiffler, co-founder of the Center for Arab Narratives, part of the Arab Community Center for Economic and Social Services, or ACCESS. For example, Stiffler said Arab children make up the majority of elementary school students in Dearborn, Michigan, but state data shows they are white.

Inclusion would “give a better sense of who these communities are and what their needs might be,” Stiffler said.

Population counts

Until now, federal population figures for MENA communities have been estimates. For the first time, the 2020 Census offered a write-in option so respondents could mark their race and ethnicity as “white” but state their ancestry. About 3.5 million people wrote in the MENA countries of origin, of which Lebanese, Iranians and Egyptians made up almost half.

California, Michigan and New York had the largest MENA populations, with a combined population of more than 300,000. Those states were followed by Texas, Florida, Illinois and New Jersey. Ahead of 2020 enrollments, the American Community Survey, an ongoing survey by the U.S. Census Bureau, provided limited estimates.