Establishing a Comprehensive Database for Patients with Sickle Cell Disease in the State of Nebraska, the First Step of Improving Their Care

Background. Sickle cell disease (SCD) is a group of blood disorders that results from point mutations causing different hemoglobinopathies, including hemoglobin SS disease, hemoglobin SC disease, and sickle cell beta-thalassemia. According to the Centers for Disease Control and Prevention (CDC), it is estimated that SCD affects 100,000 Americans. SCD occurs among one out of every 365 African-America births, and one out of every 16,300 Hispanic births. Approximately, one in 13 African-America babies is born with sickle cell trait. Despite being a common disease, patients with SCD have less access to comprehensive team care than patients with other genetic diseases. The state of Nebraska has a population close to two million, where the three most common races are Caucasians (78.1%), Hispanic (11.4%) and African American (5.2%). Despite the racial distribution, SCD is not uncommon in Nebraska. Herein, we report the first database of SCD in the state of Nebraska by reviewing the records of the two biggest tertiary care centers in the state: The University of Nebraska Medical Center (UNMC) and Children's Hospital & Medical Center. Methods: This is a retrospective study. After an IRB approval, we retrospectively reviewed charts of 358 patients who had an ICD-10 code related to SCD and had their care at UNMC or Children's Hospital & Medical Center since January 2014. Inclusion criteria included any patient, regardless of age, who had a confirmed diagnosed of SCD regardless of the genotype. Data was collected to create a comprehensive data base for both adults and children. Children were defined as any individual who is following with pediatric hematology as an outpatient or was born on or after January 1, 2002. Results: A total of 358 patients were reviewed with 355 patients included in the study. Ninety six of them were adults with SCD (mean age of 28.9 years) while 82 were children with SCD (mean age 5.7 years), and 178 patients with sickle cell trait. Table 1 summarizes the demographics for adults and children with SCD. Only 30 out 96 patients from the adult group were employed. Sixty three adult patients were prescribed hydroxyurea compared to 32 children. Regarding simple red blood cell transfusion, the adult group had a median of 2.1 units/year (0-99.2 units/year) which was less than the pediatric group 5.8 unit/year (0-95.6). Twenty one adult patients had alloantibodies, with Anti-E as the most common , while only three children had alloantibodies. Table 2 summarizes the SCD complications for both adults and children per genotype. Our study showed that having SS genotype was associated with higher risk for acute chest syndrome (p= 0.0023) and iron overload (p=0.039). Moreover, SS genotype was predictor of more emergency room (ER) visits and admissions compared to the SC genotype. Since January 2014, the mean number for clinic visits was higher for children compared to adults (30 vs 14.3 visits, p<.001). However, the mean number for ER visits was higher in adults compared to children (8.1 vs 3.8 visits, p<.001). Also, adults spent more days in the hospital with a median of 20 days (1-748 days) compared to pediatrics who had a median of four days (1-94 days). The probability of admission once presenting to the ER was also higher in the adults group compared to pediatrics group (0.56 vs 0.44). During the study period, six adults patients died and none from the pediatric group. Conclusion : SCD and its complications represents a serious issue in the state of Nebraska. It is also associated with high acute health care utilization. Our study showed that most of the cases are in the urban areas of the state of Nebraska. Also, we noticed that adults have more demands and lack of care compared to children, and they also don't follow in clinics as children do. This project represents the first step in the plan to improve the care of patients with sickle cell disease in Nebraska, through establishing a comprehensive data base and a comprehensive sickle cell disease clinic for both adults and children. Disclosures Gundabolu: BioMarin: Consultancy; Bristol Myers Squibb pharmaceuticals: Consultancy.

“El Tema del Apollo”

This chapter examines the relationship between African America, Latin America, and the Caribbean through the music and its associated performance practices realized on the stage of the Apollo Theater in Harlem from 1934 to the early 2000s. Through the lens of race, nation, and ethnicity, the complex and often tenuous relations among the diverse peoples who colluded and collided on the stage of the Apollo to produce some of the most significant and influential contributions to popular cultural expression in the United States throughout the twentieth century are explored. Though the Apollo is considered one of the most significant and influential venues in the twentieth century for African American music, studying the discourse and historical narratives concerning the theater’s history and traditions reveals that the venue was also one of the most important Caribbean and Latin American stages in the United States during that time. Situated just blocks from one of the most vibrant Caribbean and Latin American neighborhoods in North America, Spanish Harlem or El Barrio, the Apollo Theater was and continues to be a nexus for intercultural exchange between African American, Latin American, and Caribbean musics.

“Dear Anglo”: Scrambling the Signs of Anglo-Modernity from New York to Lagos

This essay reveals the surprising ties within an African American print franchise: the Anglo-African Magazine, the Weekly Anglo-African, and their various iterations between 1859 and 1865 and a Lagos journal also titled The Anglo-African (1863–65). The link was Robert Campbell, the West Indian editor of the Lagos paper and former contributor to the New York ones. I show how Campbell not only borrowed his title from his African American colleagues but also adapted their editorial models for hailing abolitionist publics and constituting interpretative communities. As these Anglo-African journals proliferated from New York to Lagos, “Anglo-African” became a racialized title associated with a particular kind of journal, rather than just a racial term. A salient feature of an “Anglo-African” type of journal was its scrambling of its titular term and its prefix Anglo. Thus, in the US papers, Anglo became a shorthand for a black publication, while their Nigerian counterpart inserted the US and African-America into the “Anglo” world of the Lagos Anglo-African. By decoupling “Anglo” from whiteness in one context, and from Britishness in the other, these editors forged a black Atlantic counterculture that worked at what Paul Gilroy has called the “hidden internal fissures” of modernity.

Recognizing the Ethiopian Flag

This chapter uncovers the beginnings of a more grounded Ethiopianism in its treatment of nineteenth-century lyric verse by Walt Whitman, Paul Laurence Dunbar, and others written on the topic of Ethiopia, when abstract Ethiopianism was a prominent ideology in African America. It addresses the politics of Walt Whitman's poem, particularly in the poem's “recognition” of the Ethiopian flag, in light of the press's treatment of the Anglo-Abyssinian conflict. Paul Laurence Dunbar's interpretation of the Ethiopian flag's symbolic value, in “Ode to Ethiopia” and “Frederick Douglass,” positions him uncomfortably alongside Whitman, a poet he found distasteful. His poems present an “Ethiopia” invigorated with nationalism and, unexpectedly, with militarism. The chapter also talks about two poems about Emperor Tewodros by women: “Magdala,” which appeared in the 1875 book Songs of the Year and Other Poems by “Charlton,” and “The Death of King Theodore,” in E. Davidson's 1874 The Death of King Theodore and Other Poems.

Introduction

This chapter talks about the concept and various forms of Ethiopianism as it gained visibility by the end of the nineteenth century. It talks about martial Ethiopianism, documentary Ethiopianism, and spectacular Ethiopianism. Although the malleability of Ethiopia's signification for African America made it especially well-suited as a model of black nationhood and a source of spiritual citizenship, invariably the concept of Ethiopia's long-standing imperial identity was central to this signification. The chapter also follows the development within African America of imperial Ethiopianism, the larger rubric under which variations may be subsumed. Whether assuming a military attitude, or adopting an archaeological perspective, or expressing a fascination with pageantry, each of these variations on Ethiopianism begins and extends from a commitment to the imperial.