Tip Sheets
3 tips for covering race and ethnic disparities in monkeypox outbreak
By Margarita Martín-Hidalgo Birnbaum and Bara Vaida
After hearing that U.S. federal health officials haven’t had race and ethnicity data on the vast majority of people diagnosed with monkeypox, we asked some state health departments for the information. Those agencies are supposed to collect those statistics and share them with their national counterparts, but almost four months into the outbreak, the demographic information on the more than 11,000 people diagnosed with the disease seems to be trickling out.
The scant information available, though, suggests that people of color account for more than half of reported cases of the disease. Because Hispanic Americans may represent about 28% of Americans with the disease, we reached out to state health departments in Arizona, New Mexico, New York, and Texas, states with sizable populations of the country’s largest cultural group.
We also looked at the health agencies’ websites to find out what demographic information was available to the public. What we got back was a taste of what public health researchers at the CDC appear to be dealing with:
● A spokesman for the health department in Texas, didn’t share the race and ethnicity data, and the website doesn’t have a case breakdown by race and ethnicity.
● New York and California have race and ethnicity data on their websites.
● The Arizona health department communications representative told us they weren’t keeping track of that information, and we didn’t find monkeypox data readily available on the agency’s site.
● New Mexico’s representative said they weren’t releasing that information because they had few cases and wanted to protect the privacy of people with the infection. We didn’t find race and ethnicity data on the department’s monkeypox page.
In this tip sheet, we’re suggesting three threads you can pull on to explain to readers what may be driving monkeypox trends in the U.S. and what we may be seeing here in the coming months. We’re also sharing a list of experts who can give you information about the disease and discuss health equity measures that may be associated with the disease’s demographic trends.
Themes and data sources
1. Population demographics may vary significantly by state, so you may want to narrow your reporting to states with significant proportions of people of color. When you call state and territorial health departments for race and ethnicity data, ask them how they collect it and how and when they report it to federal authorities.
The CDC has put together a health department directory that includes links to agencies in territories and freely associated states. Reach out to the Tribal Epidemiology Centers for trends among Native American and Alaska Native people. Theresa Spinner, the media contact for the National Association of County and City Health Officials, and Stephanie Rhodes, the public relations director at the Association of State and Territorial Health Officials, could help you track down the sources you need.
And ask state officials for a breakdown by gender identity and sexual orientation that includes the race and ethnicity data for those populations. Although anyone can get monkeypox, global health data shows that gay, bisexual and other men who have sex with men are more commonly affected by the disease. Now that the vaccine has been distributed, ask for immunization statistics, too.
2. Ask state health departments if they are also compiling educational attainment, income, employment, insurance coverage status and other information about people testing positive for the disease. Having the statistics for those social determinants of health will help you give context to health equity themes that may be relevant to the outbreak. With that in mind, you’re going to want to know what the numbers are for those health measures— at the state and national levels.
For population, employment and health insurance coverage statistics, reach out to the U.S. Census Bureau, the U.S. Bureau of Labor Statistics and the U.S. Department of Health and Human Services, which earlier this year published this report on race and ethnic disparities in health insurance status. Use research from The Commonwealth Fund and the Health Equity Tracker from the Satcher Health Leadership Institute at the Morehouse School of Medicine to give context to data.
3. Find out what HIV and STD advocacy groups such as amfAR and the National Association of STD Directors are doing to promote monkeypox testing and prevention measures among people of color. Ask their representatives whether they are working closely with public health agencies to reach people who may be at risk for the disease, and look for their messaging on Twitter, Instagram, Facebook and TikTok.
Don’t forget to ask them whether they have monkeypox prevention materials in a variety of languages. And if you are bilingual (and have the time), compare what’s being put out here in other languages to what’s distributed in countries where English is not the primary language. For example, take a look at Spanish-language messaging here and in Mexico.
Margarita Martín-Hidalgo Birnbaum (@mbirnbaumnews) is AHCJ's Health Equity Core Topic Leader. An independent journalist who has covered health disparities, Birnbaum’s stories have been published by American Heart Association News and WebMD. Bara Vaida (@barav) is AHCJ's core topic leader on infectious diseases. An independent journalist, she has written extensively about health policy and infectious diseases. Her work has appeared in the National Journal, Agence France-Presse, Bloomberg News, McClatchy News Service, MSNBC, NPR, Politico, The Washington Post and other outlets.