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

Iyman Hamad, a Palestinian American public health graduate student at Wayne State University in Detroit, had to search online to figure out which race or ethnicity box she should 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 were rampant in her community. Because Arab Americans were considered to be white in the absence of a category for them, county funding for outreach in minority communities was delayed, probably causing avoidable deaths, she said.

“In that time, we had so many Arab Americans die, especially elderly,” she said. “By the time we got the funding, we had so much work to do to catch up, while other [minority] communities were taking advantage of the shot.”

For decades, U.S. residents with heritage from the Middle East and North Africa, which is known internationally as the MENA region, have been classified by the government as white. The grouping masked differences in income, health, housing and other important markers. And when public health officials lack data on COVID-19 deaths or vaccine uptake in the MENA community, for example, it’s difficult to distribute dollars and other public resources effectively.

“The lack of a dedicated identifier makes it hard to isolate data,” said epidemiologist Nadia Abuelezam, an associate professor at the Boston College Connell School of Nursing and the daughter of Palestinian refugees. “Systemically, 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 across federal agencies, including the addition of a new MENA category to the census. They are the first race and ethnic category changes since 1997. Along with a combined race/ethnicity category, the changes include a combined Hispanic or Latino checkbox and removal of phrases that can be considered pejorative, including “Negro” and “Far East.” Federal officials have said these revisions will yield 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 who live in multiple countries, such as Assyrian, Kurdish and Chaldean people.

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

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

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