Shuto Orizari, a municipality in Skopje, Macedonia, with a majority Roma population
I first became aware of the deplorable health disadvantage of Roma, the largest minority group in Europe, in 2006. At the time, I was an epidemiology doctoral student at Columbia University working on a study that demonstrated the harmful effects of lead exposure during pregnancy from a smelter in Kosovo, Yugoslavia. I learned from an article in The New York Times that Romani children in United Nations refugee camps were suffering from severe lead poisoning due to living in U.N. refugee camps placed by the same lead smelter. I was outraged and quickly penned a Letter to the Editor. My eyes were opened to how structural racism can affect health in diverse social and historical contexts, and I decided to use my knowledge and training to call attention to the impact of racism on the health disadvantage of Romani women.
The first step was to build relationships in the field with Romani NGOs in Serbia and Macedonia. As I spoke with local gynecologists and Romani women, I was struck again by the similarities between what I knew about racism and maternal health in the United States and what I was seeing and hearing in the Balkans. I heard a Romani woman describe how she lay bleeding after childbirth and felt ignored by staff. I heard a gynecologist attribute poor birth outcomes of Romani women to genetics. I saw neighborhoods that were predominantly Romani with no access to a gynecologist.
These experiences made me think of the powerful work of Camara Jones, MD, PhD, MPH, Senior Fellow at the Satcher Health Leadership Institute and Cardiovascular Research Institute at the Morehouse School of Medicine, on how race is a sociologic construct, and how racism operates at various levels—institutional, interpersonal, and internalized—to create and perpetuate health inequalities.
International discourse on how to dismantle the impact of racism on maternal health may help us learn together how to achieve health equity within and across borders, writes Teresa Janevic, PhD, MPH, a perinatal epidemiologist and Assistant Professor in the Blavatnik Family Women’s Health Research Institute at the Icahn School of Medicine at Mount Sinai.
Although race wasn’t a concept frequently applied in the Balkan context, I used Dr. Jones’ framework in my research to show how racism influences access to maternal health care and delivering a low birth weight infant among Romani women. Back in the United States, in an ongoing research project on racial-ethnic discrimination during obstetric care, I can hear echoes of the voices of Romani women in the black and Latina women’s stories describing feelings of being ignored and given low priority.
Recently, I was invited by the International Journal of Public Health to contribute an editorial on the progress to the goal of improving the health of Roma, in which I noted positive steps but an overall lack of evidence on improved health equity. Since that 2006 article in The New York Times article, news headlines now often feature “Roma” instead of the pejorative term “Gypsy”, a marker of some progress in international awareness of Roma identity and human rights. However, where have we come in advancing Romani maternal and child health, and what is next? In my editorial, I outline several paths forward for research. Again, despite the distinct historical and political contexts, there are commonalities with the struggle for maternal health equity in the United States:
- Building equity-sensitive surveillance systems: Vital statistics systems lack detailed information on ethnic background in the Balkans for maternal and child health surveillance, and data on disparities in health care quality is sorely lacking. In the United States, we have somewhat more advanced systems for surveillance. But, as Elizabeth Howell, MD, MPP, Director of the Blavatnik Family Women’s Health Research Institute, recently pointed out in testimony before the House Committee on Energy and Commerce, we lack quality metrics to sufficiently monitor disparities in quality of obstetric care, and we must support infrastructure to improve data collection and measurement.
- Rigorously evaluating health interventions and policy: The impact of policies across sectors on maternal health equity is not sufficiently evaluated. Research on the social determinants of maternal morbidity and mortality in the United States has been limited in scope and lacks a focus on macro-level determinants. Likewise, in the Balkans, policies implemented across sectors for Roma inclusion have not been sufficiently evaluated in regard to their impact on maternal and child health. Tools provided by implementation science may assist in identifying why interventions and policies do or don’t work to improve equity. To cite an example from the Balkans, health mediators are one of the most widely implemented health interventions targeting Romani women, yet an implementation science study brought to focus factors weakening their impact, such as insufficient numbers and lack of systematization. Implementation science can play in a role in the United States by testing if quality improvement efforts are equitably implemented.
- Disrupting structural racism through workforce development and civil society building: Programs to strengthen and increase the diversity of the public health workforce, particularly in non-European Union countries with large populations of Roma, are essential to shift the structures of power and privilege in health systems. A successful program in Serbia showcases the potential of this approach. It is also essential to include Romani women in policy discussions across sectors. In the United States, workforce development to increase the diversity of the maternal and child health workforce is crucial. Both at home and abroad, training in implicit bias and health care discrimination of health care professionals is needed, not only in trainees, but also in the field.
The late Esma Redzepova, queen of Romani music and an activist who fought for the rights of Romani women, defined racism as “the poisonous shafts of contempt and intolerance.” International discourse on how to dismantle the impact of racism on maternal health may help us learn together how to achieve health equity within and across borders.
Teresa Janevic, PhD, MPH, is a perinatal epidemiologist and Assistant Professor in the Blavatnik Family Women’s Health Research Institute at the Icahn School of Medicine at Mount Sinai. Dr. Janevic’s research focuses on how social determinants such as neighborhoods, racism, migration, and policy influence maternal and child health.