2021-2022 Illinois Task Force on Infant and Maternal Mortality Among African Americans Report

Maternal and infant mortality and morbidity remain significant indicators of national and state-level health. In addition, the crisis of non-Hispanic Black/African American infant and maternal mortality and morbidity in states, especially Illinois, mirrors the larger trends seen across the country. Non-Hispanic Black/African American women in Illinois are about three times as likely to experience a pregnancy-related death as White and Hispanic women. Non-Hispanic Black/African American women also have the highest severe maternal morbidity (SMM) rate at 132.4 per 10,000 live births; this is more than two times the rate of non-Hispanic White women and significantly higher than Asian and Hispanic women. There is an overwhelming volume of evidence highlighting how systemic racism throughout the health care system negatively impacts maternal morbidity and mortality for women of color.

For infants, those born to non-Hispanic Black/African American women die at rates more than double that of infants born to White, Hispanic, and Asian women in Illinois. Although the infant mortality rate (IMR) for infants born to non-Hispanic Black/African American women in Illinois decreased by 25% from 2000-2008, it did not significantly change from 2008 through 2018 (from 15.9 in 2000 to 13.7 in 2018). In contrast, the IMR decreased by 18% among infants born to White women (from 6.0 in 2000 to 5.0 in 2018) and by 29% among infants born to Hispanic women (from 7.4 in 2000 to 5.3 in 2018). The stagnant high IMR among infants born to non-Hispanic Black/ African American women continues to highlight the need for targeted interventions that address underlying structural racism in a variety of contexts.

In July 2019, the Illinois General Assembly passed Public Act 101-0038, which created the Illinois Task Force on Infant and Maternal Mortality (IMMT) among African Americans Act (hereafter known as task force). The task force has been charged with working to identify and to present key strategies to decrease infant and maternal mortality among African Americans in Illinois. In this two-year report to the General Assembly, the task force presents the following:

The state should ensure that organizations collaborating with the state maternal and child health (MCH) social service programs receive resources (i.e., personnel, financial, technical assistance, facilitators/ experts) necessary to measure their successes, gaps, and unmet needs. In addition, the state, through its various state agencies, should prioritize and fund independent evaluations of all statewide MCH programs to ensure they are reaching the intended populations, being implemented properly and efficiently, and positively impacting the community and MCH outcomes on consistent core measures. The evaluation team should include community members and individuals with “lived experience” to ensure the community voice is not only part of the decision making, in terms of metrics to assess, but also in the assessment itself.

• The state should procure and implement a modernized and coordinated data system that connects all state-level MCH systems. This system should capture a core set of metrics within and across MCH systems, that is built upon federal mandates, requests of funders, and has community engagement in the planning and execution . Additionally, the core metrics should be built with input from women and families with lived experience.
• The proposed data system should have the capability of capturing data in multiple ways (e.g., manually, downloaded, and automatic transfer from electronic health records).
• The proposed data system should be flexible enough to allow state agencies to add additional data fields (across or within programs) as needed to generate standard, as well as customized reports, for the state agencies and the organizations that utilize the system.
• To build a unified, comprehensive, and coordinated data system that is statewide, resource allocation is essential from the state. This would include funding for personnel, workspace, review and evaluation of available systems, the cost of programming/software/hardware, etc. The task force recommends this be a priority in the fiscal 2024 Illinois budget planning process.

The state should develop the infrastructure whereby all MCH efforts (e.g., government agency, community-based organization) can be catalogued and referenced by funder, communities, priority populations, scope of work, deliverables, metrics, and any other data point determined to be needed. This will allow for improved coordination, efficiency, transparency, and synergy to support the health of the most vulnerable and marginalized populations.

• The state should be proactive in assisting state residents who will be impacted by the sunset of the Public Health Emergency Act in 2023. It is estimated that as many as 25-35% of persons who have received Medicaid assistance during the pandemic years will lose coverage. This could impact their ability to receive health care, housing access, food access, and other forms of social supports. Assistance might include public service announcements informing the public of the imminent change, subsidizing navigators to assist those eligible for re-enrollment, advance notice to providers across the state, including medical, housing, childcare, social services and specialty care, shelter care, and others. The state should also provide resources to state agencies that will be potentially impacted by an influx of citizens seeking assistance as a result of the Public Health Emergency Act sunset. The state should consider allocating resources to birthing people even after the sunset of the Public Health Emergency Act. As research indicates, birthing people were significantly impacted by the COVID-19 pandemic, including experiencing poorer birth outcomes. Data further reflects, as is the focus of this task force, that these negative outcomes are more frequently and drastically experienced by African Americans.
• The state should adjust the timeframe for the task force to submit a report to the General Assembly to every two years as opposed to every year.
• This timeframe will afford the task force more time to collect and review data and input from key stakeholders; to create synergy between subcommittees and collaborators; and to generate thoughtful, impactful, and actionable recommendations that can be implemented statewide.

The task force also strongly encourages the state to provide financial investment to support collaborations with key stakeholders to develop and to implement recommendations.

The state should enhance IDPH’s capacity to support the activities of the task force and its affiliated subcommittees and workgroups by supporting 1-2 dedicated full-time equivalents within the Office of Women’s Health and Family Services (OWHFS) for the duration of the task force. This recommendation was included in the January 2021 inaugural report provided to the General Assembly.

• Materials and support needed to engage and document community outreach. This includes stipends, transcriptions, and analysis of meetings with community residents that will inform the work of the task force.
• Funding the effort to coordinate the efforts in the state, as per above.