In a recent report, the Commonwealth Institute reviews the change in health coverage and access across Black, Hispanic, and white populations since the implementation of the ACA. The study shows that the ACA led to significant health insurance coverage gains for Black and Hispanic* populations in particular. However, that momentum has hit a wall. Since 2016, Black and Hispanic coverage rates have been moving in the wrong direction: Black adults have experienced a 0.7 increase in their uninsured rate and Hispanics consistently report higher uninsured rates than white or Black adults. These findings are reinforced by a study that appeared in Health Affairs earlier this month – learn more from my colleague Maya Nakamura here as she digs into the details. 

The evidence from both studies reinforce the ACA was and is an instrument to narrow coverage disparities. The studies are also a reminder to refresh our view of data and reconsider how to use data to channel resources to advance health justice. Examining data can provide a insights into where to direct advocacy energy and resources. Data also can present an invitation to go deeper – to listen to communities as well as to cultivate leadership and a sustained movement for systems change. Further, data are also a tool to assess who is and is not included; it reminds us what groups are lumped together for the purposes of summarizing trends. Finally, quantitative data is important but not sufficient as we know from our story collection work – data offers an outline but doesn’t always provide the details needed to understand the full picture. 

#1 Medicaid expansion remains a key tool to advance health justice. 

Not surprisingly, the narrowing of coverage disparities, as reported by the Commonwealth report and reinforced by a wealth of evidence, was most pronounced in Medicaid expansion states where people of color had the most to gain: Black and Hispanic adults are more likely to live under 200 percent of the federal poverty level due to systemic barriers to economic opportunity. For example, 46 percent of Blacks and 36 percent of Hispanics are working and living in the 15 non-expansion states. These states are mostly in the South where a larger share of people of color live in this country. The authors review two state scenarios – Georgia and Louisiana. With the passage of the ACA, uninsured rates dropped in both states for all groups. Following Louisiana’s expansion of Medicaid in 2016, the uninsured rate for Black and Hispanic adults dropped by 12 and 16 percentage points respectively. In Georgia, rates remained largely unchanged. The evidence echoes what advocates already know: Medicaid expansion is a key tool to address racial and ethnic coverage disparities in health access and is a vital tool for racial equity. Without it, we are not able to narrow these persistent gaps in access that systematically deny health opportunity to so many. A clear message from the report is where to direct our energy. 

#2 Access to coverage isn’t enough. Understanding what is happening beyond coverage matters – and reveals state–level opportunities to address health disparities. 

While the evidence from the Commonwealth report illustrates the impact of federal efforts to sabotage the ACA and Medicaid, there is good work happening in states to address health disparities that should not be overlooked. The Connecticut Health Foundation recently released a state–level report on disparities that uses data to drill down into stagnant coverage disparities, despite Medicaid expansion in the state. It also highlights significant disparities in health outcomes across racial and ethnic categories among Connecticut residents. The report highlights that while Blacks and Hispanics compose smaller proportions of the state’s population, their health outcomes across chronic disease and mortality are far worse than whites. For example, Black babies in Connecticut are more than four times more likely to die in the first year of life than white babies. Black residents are four times more likely to struggle with diabetes and Hispanics three times more likely than white residents.  

Underlying these health disparities are inequities in income, housing, food and transportation access, health care access to a regular provider and differences health coverage. Further, when Black and Hispanics access care, they face discrimination and bias—Hispanic residents are less likely to receive pain medication in the emergency room while Black residents are less likely to receive therapeutic interventions for heart disease. This unsettling data snapshot offers a roadmap for health justice. The report’s recommendations to address health disparities range from coverage expansions to changing how and who delivers care (e.g. community health workers, doulas). It also shines light on the important factors outside the health care system that influence health outcomes—or social determinants of health. 

While the report carefully presents the data and uplifts key trends, it does not dive into challenges that face smaller racial and ethnic groups in the state—namely Asian, two or more races or American Indian/Alaska Native. As such, the report is an invitation to dive deeper into the challenges of these groups in addition to highlighting opportunities to address broader trends; it is a reminder that some groups get lost in the volume of data. Using data to name a disparity is an important tool to advance a health justice agenda and can lay the groundwork for targeted interventions that begin to reverse these deeply troubling trends that are deeply rooted in systemic racism. Data is also an invitation for more focused analysis that explores challenges for groups that are often omitted due to their small numbers—reminding us that data is also a tool to assess who is left out. 

#3 Data alone does not drive change.  

While data is important in highlighting and targeting specific disparities, it does not move systems or change policy. People do. Advocates play a vital role in translating data into targeted action. However, advocates role is also to help clear the path for people to lead, build power and drive change. This hands on work is underway – with many of us learning, growing and sitting with discomfort to find our roles in supporting work to advance justice in an authentic way. One example is work supported by Raising Women Voice’s partner, Planned Parenthood of Southern New England, where the group worked with communities in Rhode Island to address maternal morbidity. Using data to identify areas in the state with significantly higher rates of death, advocates canvassed neighborhoods, talking to Black women under 40 years old. The responses helped to shape a campaign to ensure that doulas are covered by Medicaid in the state and are eligible for reimbursement regardless of insurance type. Data pointed advocates in the right direction and people with lived experience joined their voices to demand change.  

Each of the approaches—national data analysis, state snap shots and neighborhood conversations—remind us that we need to pursue a strategy of using data to inform and focus but invite in lived experience to shape agenda setting. What is clear from all three examples is that data is most useful when it’s disaggregated, used to drive conversation and listen to community—this is the refresh that health justice work requires. Federal defense work continues to be important to preserve the ACA and Medicaid as do the state and local efforts to target inequities and advance justice one data point at a time.  

*We are using the terminology the Commonwealth Report used in their study for consistency. In addition, the RI work was based on data collected about morbidity of cisgender women. We acknowledge the lack of data and representation of trans people in pregnancy-related data collection and policy. The pregnancy and parenting experiences of transgender people, intersex people and non–binary people deserve more expansive future study and targeted interventions to eliminate barriers, inequities and improve the health of these communities.