By Jeffrey B. Caballero
Six years later, more than 20 million people have gained health coverage thanks to the Affordable Care Act (ACA). While this is an achievement worth celebrating, millions continue to go without health insurance and finding them can be difficult due to lacking data from previous enrollment periods. Are all communities and groups being counted in enrollment surveys? Who is left out? It will not be easy to identify these communities without access to important data collected by health insurance Marketplaces. Without this data, people who are often excluded or ignored from health care efforts — like smaller racial and ethnic groups, immigrants and limited-English speakers — will continue to be left out.
Each year, the U.S. Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation (ASPE) releases an enrollment report for the previous year with state-by-state breakdowns, changes to insurance plans and other detailed data. The most recent ASPE report released in March 2016 showed positive increases, including the fact that more than 85 percent of those enrolled in coverage through the Federally-facilitated Marketplaces qualified for a tax credit to make their coverage more affordable.
The report also provides data on possible challenges facing the next enrollment period, namely which racial or ethnic groups have higher rates of uninsurance in comparison to others. However, the data reported on coverage within large, diverse groups of people are sorely inadequate. Asian Americans, Native Hawaiians and Pacific Islanders (AA and NHPI) represent more than 50 ethnic groups, yet the data classify all the groups as simply “Asian” or “Pacific Islander,” overlooking the wide differences and disparities among these groups. Furthermore, although data on primary languages spoken (English, Spanish, Cantonese, etc.) are collected on Marketplace applications, they are completely absent in the report. Data on primary language, race and ethnicity that have been disaggregated, or separated, are crucial in order to target enrollment efforts for specific communities so that everyone can access health care services.
Disaggregated data are also imperative to address the broad range of health disparities and other contributing factors, such as education, economic achievement, per capita income and poverty rates, preventing AA and NHPI communities from fully enjoying the benefits of health care reform under the ACA. The lack of accurate data perpetuates the “model minority myth” — that Asian Americans as a whole have better health and higher socio-economic status than other groups. For example, 14 percent of AAs and NHPIs don’t have health insurance in comparison to about nine percent of Whites. Furthermore, certain subgroups have much higher uninsured rates — 21 percent for Koreans and Pakistanis, 22 percent for Tongans and 24 percent for Marshallese. In April 2016, the Centers for Medicare & Medicaid Services released data showing that Asian American and Pacific Islander Medicare beneficiaries typically received a quality of health care similar to or better than that Whites, and better than care received by African Americans and Hispanics. However, the data on AAs and NHPIs are not disaggregated, masking disparities within our community and between other racial groups. As AAs and NHPIs are the fastest-growing racial group in the country, the gaps in data must be closed to ensure that accessible health care reaches all AA and NHPI groups.
Another gap in our knowledge is the languages spoken by those who are enrolled, as language can be a big indicator determining how easily a person can access and use their coverage. An estimated 25 million people in the United States do not speak, read, write or understand English well, including one-third of AA and NHPI populations. The challenge is that the the recent ASPE report does not include any data on primary oral or written languages of enrollees. AAs and NHPIs speak more than 100 different languages and dialects and more than 70 percent of AAs and NHPIs speak a language other than English at home, but many resources are not available in any languages other than English or Spanish. This decreases the likelihood that limited-English speakers can find enrollment information or understand how to use their coverage once insured. Language data are essential to inform efforts to reach, educate and enroll limited-English speakers to ensure that significant populations are not left out of our health care system.
While work by community groups on the ground is improving access to coverage for diverse racial and language communities, a sustainable improvement to the wellbeing of AAs and NHPIs is not possible without accurate disaggregated data — not just in the ASPE report but in all ACA and health care data. Until there is a clear picture of where the progress has been made and where challenges still exist, some of our communities will continue to be underserved and ignored by health efforts that have provided stability and wellbeing to millions.
Jeffrey B. Caballero is the executive director of the Association of Asian Pacific Community Health Organizations (AAPCHO), a co-founder of Action for Health Justice along with Asian & Pacific Islander American Health Forum and Asian Americans Advancing Justice-Los Angeles.