Every year, the Centers for Disease Control and Prevention (CDC) reports that Asian Americans and Pacific Islanders (AAPIs) have some of the lowest recorded HIV transmission rates among all demographics in the United States. For 2018, AAPIs accounted for 2% of HIV diagnoses—885 out of 37,986—in the U.S., even as they accounted for 6% of the overall population.
These statistics paint a successful picture of health for the demographic. But they fail to account for the lack of proper outreach to AAPI communities. For instance, CDC’s 2018 National Health Interview Survey (NHIS), which monitors national health by interviewing tens of thousands of Americans, found that Asian people surveyed reported the best health, the lowest rates for avoiding medical care due to cost, and the highest rates of private insurance, with the lowest rates of no insurance.
However, the same survey found that people of Asian descent had the highest percentage of people who had never been tested for HIV. While CDC reports that one in five people in the Asian community are unaware that they are living with the virus, this blanket survey indicates that the number is likely higher than that, particularly when one considers how poorly information about AAPI communities is collected.
The term “Asian” applies to a group of people who account for nearly 60% of the entire planet’s population. In the U.S., when information about the Asian and AAPI communities is collected, it fails to differentiate between subgroups. As a result, those who are doing incredibly well end up representing the entire community.
For instance, though the CDC’s community health survey rightly indicates that only 7.1% of Asian people surveyed were without health insurance and only 2.5% of Asian people went without medical care due to cost, it fails to communicate who these people were; whether they were Japanese or Korean—who have the highest and lowest median household wealth in the nation’s largest AAPI community, Los Angeles―or Bhutanese, who as a subgroup of the AAPI community received the largest share of help from the Supplemental Nutrition Assistance Program (SNAP) in the nation for 2015.
As Pew Research reported in April 2021, a casualty of this lack of differentiation is that actual community need goes unreported. According to Pew, though AAPIs had one of the lowest poverty rates for 2019—at 10% versus 13% for all Americans—when looking at subgroups, one saw that Mongolian people actually had one of the highest rates at 25%.
These inequities among AAPI subgroups are rarely discussed in national media and legislative policy sessions. Instead, model-minority myths—which state that AAPIs are all successful, lack problems, and require little financial assistance—have emerged as the prevailing narrative.
Beyond basic racism and erasure, according to a 2016 study from Pew, one reason that information about AAPI subgroups goes unreported is because of linguistic diversity within the Asian diaspora, coupled with a lack of translators among pollsters. Additionally, subgroups are only counted when at least 100 adult respondents who can communicate with the pollsters are found.
Pew reports that because a higher percentage of all U.S. Asian adults are foreign born (79%), and only 62% speak English well enough, many respondents are not able to participate. When looking at Latinx people, Pew found that the number of people who spoke English well enough to participate was at the same figure, but because Spanish was the common language among these respondents, translation services were easy to provide.
According to a 2015 report published in Annals of Epidemiology on problems with collecting and interpreting AAPI health data, investigators “grouped Asian-American subjects together or examined one subgroup alone,” which resulted in findings being “often incorrectly extrapolated to other Asian-American subgroups.”
A 2019 study published by BMC Public Health found that this practice of aggregating data hid “meaningful differences in health and health risks among Asian ethnicities.” This study focused on diabetes, hypertension, coronary artery disease, obesity, and smoking among middle-aged to older adults. It included 274,910 Asian-Americans of Chinese, Filipino, Japanese, Korean, Southeast Asian, and South Asian descent.
Investigators for the study found substantial differences in health burdens between the subgroups, with differences of 16 and 22 percentage points for diabetes and hypertension and ranges of 14% to 39% for obesity among the participating women. Looking at relevant risks along these lines, the study concluded that “reporting statistics for an aggregated Asian-American racial group masks meaningful differences in Asian-American ethnic group health.”
But studies for diabetes and heart disease differ from HIV because people within the AAPI communities, writ large, have long been regarded as low risk for HIV seroconversion, even as the virus is a growing problem. According to a 2019 study from Policy, Politics, & Nursing Practice, while other groups have higher transmission rates, Asian Americans aged 25 to 29 perceived themselves as low risk for HIV even though they were the only ethnic group in the country with continuously increasing HIV transmission rates; from 4.9 per 100,000 people in 2011 to 5.5 per 100,000 people in 2016.
But even this study fails to report on how HIV is affecting specific subgroups, and there is little existing data to answer that question. And because stigma and misperceptions about the virus prevent many people within AAPI communities from getting tested in the first place, an accurate picture of how the virus is affecting subgroups within the community is unknown.
That lack of clarity has dire health consequences for the nation. The AAPI community has been the fastest growing demographic within the U.S. for years, with the population increasing by 81%, from 10.5 million to 18.9 million, between 2000 and 2019. So even as the reported and projected seroconversion rates for AAPIs hover between 2% and 4% of diagnoses among the total U.S. population, the actual rate could be much higher and growing, particularly in communities that experience poverty.
Because SNAP benefits are accurately recorded, Urban Institute—a nonprofit research organization that studies facts to improve public policy—was able to issue a 2018 report on wealth inequality and poverty among AAPIs with a significant focus on food stability. That report concluded that subgroups within the Asian-American diaspora are falling through the cracks, with few people in positions of power to affect change paying attention.
The same holds true for HIV. When looking at a 2019 qualitative narrative study involving 11 adults living with HIV in Wichita, Kansas, the largest subgroup affected was Vietnamese, with four people living with HIV, followed by two people each of Hawaiian and Pakistani descent, and one Japanese, Korean, and Hmong person each. While six themes—including sexual taboos, stigma, misperceptions about HIV, and lack of awareness of HIV care—emerged from the interviews, their cultural differences remained vast.
More importantly, though this detailed information is valuable, it would be impossible to use it to extrapolate national trends due to regional differences across the country. For instance, according to a 2001 report from the now-defunct Filipino Task Force on AIDS, HIV was the leading cause of death for American-born male Filipinos between the ages of 25 and 34 in California during those still-early days of the epidemic.
Despite these findings, meaningful and culturally relevant prevention methods for engaging with HIV in individual AAPI communities, and the entire diaspora at large, have received little investment. As the study on problems with the collection and interpretation of Asian-American health data concluded, fixing this problem means “oversampling of Asian Americans, collection and reporting of race/ethnicity data by Asian-American subgroup, and acknowledgement of significant heterogeneity among Asian-American subgroups when interpreting data.”
But just as meaningfully, it means seeing Asian Americans and Pacific Islanders as people deserving of care and acknowledgement of their vulnerabilities to HIV, despite the model-minority lie that erases any indication of their need for education, assistance, intervention, and compassion.