Why I Participate: TaLana Hughes, MPH

Posted November 03, 2016 by TaLana Hughes, MPH

TaLana Hughes
TaLana Hughes, MPH     

NICHQ serves as the National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), a national initiative to increase the number of healthcare providers who can knowledgeable treat people with sickle cell disease. TaLana Hughes, MPH is faculty member of SCDTDP representing a parent/community-based organization (CBO), where she helps ensure the alignment of strategic goals, enables consistent team communication, participates in quarterly Oversight Steering Committee meetings, and contributes to project strategy decisions by sharing the patient/family/CBO perspective.

Why do I participate? Because I want every parent who receives a child’s sickle cell disease diagnosis in Illinois to be informed, encouraged and directed to systems of support for themselves as well as their child.

I did not learn that I carried the sickle cell trait until I was pregnant because screening for sickle cell was not added to the newborn screening panel in Illinois until 1989. I received a phone call with the results of my daughter’s newborn screening test result; I was not prepared, educated about what sickle cell disease was, or connected to any systems of support. I was told to choose a pediatric hematologist from the list provided and set up an appointment to discuss our daughter’s results.

Being told over the telephone that your newborn has a genetic condition is a very frightening and impersonal experience. Not only were we given life-changing news, but we also were not provided any support to deal with receiving this diagnosis.

At the time of the diagnosis, I was pursuing my bachelor’s degree in public health and needed to complete an internship. I chose the Sickle Cell Disease Association of Illinois (SCDAIExternal Link) because that experience spoke to me. But beyond seeking the appropriate care for my daughter, I was determined to research what resources existed for the sickle cell community, and where the gaps in care were. Over the course of my internship, I quickly learned there was a lot of work to do in raising awareness for sickle cell trait and disease, and that the socioeconomic needs of the community had to be addressed.

As part of SCDAI, I have dedicated myself to reaching out to communities throughout Illinois to support those with sickle cell disease. We host baby showers for parents of infants, support groups, presentations at community institutions like churches and schools, and other programs to teach families how to access resources and necessary treatments. I also work within the healthcare system and seek to improve how providers treat sickle cell disease. Having managed grants for SCDAI and its partners, advocated for government support in Springfield and on Capitol Hill, and developed partnerships with all of the sickle cell centers throughout the state, I hope to help increase the number of providers who have the skill and experience to address these patients’ needs.

This disease has been around for too long to still be the victim of ignorance, stigma, bias and discrimination. Individuals with sickle cell disease deserve to have a quality standard and access to care. I participate to share my journey as a young mother, executive director and advocate, and most important to bring enhanced education, awareness, empathy, compassion and urgency to the sickle cell community as a whole.

TaLana Hughes, MPH, is the executive director of the Sickle Cell Disease Association of Illinois.

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