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JENNIFER DEGL

AUTHOR, SPEAKER, MATERNAL & NEONATAL HEALTH ADVOCATE

FOR NICU FAMILIES, RACIAL AND HEALTH EQUITY IS NOT JUST A MOMENT … IT’S A MOVEMENT

That is the title of the article I recently published in Advances in Neonatal Care, the journal of The National Association of Neonatal Nursing (NANN). Health care disparities are finally getting the attention they deserve and the neonatal population is not immune. 

You can view it by clicking HERE.

Clinical trials need participants from various different genetic backgrounds and it’s paramount that babies of color are represented in these trials, yet many of their parents are hesitant to enroll them due to mistrust in the medical community that is based in clear health care disparities in maternal health, as well as historical mistreatment of African Americans during the Tuskegee experiments. 

I am aware that this goes much deeper than what I could possibly understand being a white woman in the United States. This is why myself and Preemie World founder Deb Discenza have partnered up to cochair a Racial and Health Equity workgroup for the International Neonatal Consortium (INC), of which we both sit on their Leadership Team. Since neither of us are from a background of color, we are grateful that Tamorah Lewis (MD, PhD, Pharmacologist and Health Equity Advocate) has joined our team as a third cochair. Together we hope to effect some changes in the neonatal health care system so that more families of color trust their medical teams and enroll their babies in research. We want this so we can better develop medications for ALL babies and so ALL babies have the drugs they need and that work best for them so that ALL babies can thrive. 

This partnership led another INC colleague Wakako Ecklund, Nurse Practitioner, Author and Advocate) to invite Deb Discenza (Preemie World) and Gigi Khonyongwa-Fernandez (Families Blossoming) to join her in writing the article I am sharing today. I forgot to mention earlier that Deb Disenza is also a cofounder of The Alliance for Black NICU Families, an organization recently started to help raise and remedy the inequities in the neonatal communities. And I also have to mention that Deb, Gigi and I are also members of the NICU Parent Network (NPN), which is an organization designed to support NICU parent professionals who run their own nonprofits or advocate for NICU families and premature/medically fragile babies. 

We are all connected and are ALWAYS partnering up to better the lives of all babies. Please reach out if you have a passion project or idea that falls under our wheelhouse and we will work to make it happen.

That’s it for now. I hope you enjoyed the article and please connect with me if you have questions or ideas. 

Have a great day!