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Voices of the Sickle Cell Community: Medical Justice for Baltimore Schools

By Dylan Balter '19, Staff Writer

· Dylan Balter

The Chairwoman of Maryland’s Senate Committee for Education, Health and Environmental Affairs shivered and motioned her assistant to turn on the heat; it was a January day in Annapolis.

This ostensibly simple heating request quickly became enveloped in irony, as supporters of Senate Bill 161 entered the Committee Room with legislation aimed at keeping children with sickle cell disease (SCD) safe in school.  The Baltimore City Public School System’s (BCPSS) woefully absent heat this winter was a reminder of the law’s urgency.    

Last month, Baltimore experienced consecutive days below freezing. Students endured bus rides and classrooms devoid of heat.  Sixty schools, comprising one-third of the schools in Baltimore City, faced such problems, and many schools consequently closed.  Photos of students clad in coats and gloves circulated.  Parents stormed the Baltimore City Public Schools District Office, dubbed “North Avenue.”  While such circulation and conversation is crucial for addressing the immediate and systemic problems of the Baltimore City Public School System, one vital group of voices has largely been ignored: that of the sickle cell community.

Sickle cell disease (SCD) is a genetic red blood cell disorder most commonly inherited by those of African descent in which red blood cells become elongated and hemoglobin cannot properly bind to oxygen.  During what is clinically termed a “crisis,” the red blood cells clump together, causing excruciating pain. Approximately 4,000 individuals in Maryland have an SCD diagnosis; half are pediatric cases.

The intersection of SCD’s genetic inheritance and its significant pediatric population renders this disease a salient point of concern for Baltimore’s students.

SCD’s painful symptoms exacerbate in winter because, according to a Virginia Commonwealth University School of Medicine study, “sickle cell disease becomes more intense when temperatures drop in the fall and winter months.”  Consequently, SCD patients avoid going outside on frigid days and dress in layers to prevent such pain.  While hematologists believe symptoms become exacerbated when blood vessels naturally constrict in cold temperatures, research has yet to concretely understand the disease’s specific mechanisms.

Despite the gradual nature of SCD research, parents of SCD children have demonstrated the antithesis, reacting expeditiously. They have underscored BCPSS’s heating crisis as not solely an education issue, but likewise as a medical one.

When Nikia Vaughan, mother and wife of SCD patients, asked North Avenue to fix the heating and lead-infested water of her daughter’s school, explaining its medical implications for SCD, North Avenue responded not with concern, but rather by asking, “Do you have legislation behind you?”  Aghast but undeterred, Vaughan is fighting to obtain legislation through Senate Bill 161: Public and Nonpublic Schools— Student Sickle Cell Disease Management Programs.

The bill’s crux lies in Vaughan’s testimony: “We want to know that our children are safe when we leave them behind at school.”

BCPSS has failed to fulfill this seemingly simple request.  When Vaughan completes annual school health forms, she must add SCD to the list of chronic illnesses; currently, BCPSS medical forms only list other childhood diseases like diabetes and asthma.  When Vaughan’s daughter fell in school, nurses provided ice, reflecting a pervasive lack of knowledge regarding SCD.  When Vaughan organized a committee of parents to clean and repaint the school’s public bathrooms to reduce immune system vulnerability for SCD students, the administration only fleetingly maintained her efforts.  And when Vaughan visited North Avenue to complain about the lack of heating, bureaucracy muffled her voice alongside those of others.

BCPSS’s inability to adequately address its SCD population is a health concern, an equity concern, and a justice concern.

Senate Bill 161 seeks to implement an SCD school management program, whereby school personnel are taught appropriate emergency protocol, educated on efficient methods of communicating an SCD child’s needs, and provided with ready access to a trained SCD employee.

This bill’s potential is immense. While proposing small, concrete changes such as training nurses so as to prevent another ice pack incident, it likewise seeks more expansive reforms regarding the integration of care and contextualization of the disease for teachers.  Moreover, it aims to spark conversation about SCD, a topic largely absent from health forms and dialogue.  Conversation has the power to reframe requests for clean bathrooms and heat as not only an educational equity issue, but as a medical justice issue as well.

As the Committee in Annapolis came to a close, the General Assembly heard a student’s perspective.  This student recalled how sickle cell crises often result in overnight hospitalizations.   Ensuing absences have not only academic consequences but have forced this student off of group projects and after-school sports teams.

SCD’s implications pivot from those concerning health to those concerning justice.

Why does BCPSS create additional obstacles for resilient students? Why does BCPSS take a passive stance toward student reintegration? If BCPSS continues to encourage student exclusion and removal rather than inclusion and empowerment, it will simultaneously continue to transmit messages of deterrence and passivity to its student body.

One student with SCD shared sanguine sentiments: “I have high dreams, and the sky is the limit.”

Senate Bill 161 is the beginning of a medical justice movement— one that encourages such high dreams and limitless opportunities through promoting a more integrated model of education and health.

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