“Other” is NOT a Race or Ethnicity: The Need for Better HIV and Hepatitis Data for AAs and NHPIs

By: Ed Tepporn

Do numbers matter? Most epidemiologists, policymakers, and advocates would say yes. “Funding should follow the data,” and “Public health efforts should stay ahead of the data” are common themes. Over the past 22 years in HIV and public health work, I’ve heard this time and time again. But what happens when your community’s data isn’t included in federal, state, and/or local reports?

Often, Asian American (AA) and Native Hawaiian and Pacific Islander (NHPI) data are reported in an “Other” category that includes American Indians and Alaskan Natives. Charts, tables, and graphs often only report White, Black, and Latino data with no mention of AAs and NHPIs.

This exclusion has real-world consequences. Health departments prioritize funding based on surveillance data. Lack of data leads to lack of prioritization of testing, prevention, and care. This leads to community misperceptions that AAs and NHPIs are not at risk for HIV, which may be a reason why AAs and NHPIs are the least likely racial group to be tested for HIV.[1] The lack of testing means that cases don’t get reported, numbers remain invisible, and the cycle repeats itself.

While the lack of data prevents us from fully understanding HIV amongst AAs and NHPIs, we do know hepatitis B is a serious risk. AAs and NHPIs make up less than 5% of the U.S. population, but are more than half of the one million people living with chronic hepatitis B in the U.S.[2] Similar to HIV, only one-third of AAs in the U.S. know they have a hepatitis B infection.[3]

At minimum, states should include “AA” and “NHPI” data in their reports. However, it is important to have detailed data because AAs and NHPIs include over 50 ethnicities and speak more than 100 languages. Each group has distinct knowledge of, beliefs around, and risk factors for HIV and hepatitis B. Thus, detailed data (e.g. Chinese, Filipino, Japanese) is needed so we know who is at risk, and what their specific barriers are.

For example, a survey of AAs and NHPIs in San Francisco showed that while AAs and NHPIs comprised only 8% of the local AIDS cases, over 30% were amongst the local Filipino American community — a major disparity that would be masked by aggregated data.[4]

Yet, a new study by the Asian & Pacific Islander American Health Forum (APIAHF), in collaboration with California State University East Bay, showed that in the ten states with the largest AA and NHPI populations, disaggregation by ethnic subgroup happened only 10% of the time. This study highlights one of the biggest problems in prevention for AAs and NHPIs — lack of consistency and data collection that vary by state.

We need state and local health agencies to represent the full diverse array of AAs and NHPIs. Even if the data is small, the specific impacts of HIV and hepatitis in each community must be counted. The failure to count is a failure to recognize, and respect, the struggles and resiliencies of AAs and NHPIs living with HIV/AIDS or hepatitis and those who have lost their lives.

What a shame that would be as our nation honors National AA and NHPI HIV/AIDS Awareness day and World Hepatitis Day on May 19th.

Ed Tepporn is Executive Vice President at the Asian & Pacific Islander American Health Forum.

[1] HIV Among Asians in the United States, Centers for Disease Control and Prevention, Last updated May 9, 2017, available at: https://www.cdc.gov/hiv/group/racialethnic/asians/index.html. See also HIV Among Native Hawaiians and Other Pacific Islanders in the United States, Centers for Disease Control and Prevention, Last updated May 8, 2017, available at: https://www.cdc.gov/hiv/group/racialethnic/nhopi/index.html.

[2] Asian Americans and Pacific Islander and Hepatitis B, Centers for Disease Control and Prevention, Last updated August 30, 2016, available at: https://www.cdc.gov/hepatitis/populations/api.htm.

[3] Id.

[4] HIV and Asian & Pacific Islanders: The Epidemic in San Francisco, Asian & Pacific Islander Wellness Center, Revised May 2011, available at: http://www.apiwellness.org/extras/2011/sf_factsheet_REV2011.pdf.