The 2nd WISSH meeting was held in Atlanta, GA and was in conjunction with the 2nd National Conference on Blood Disorders in Public Health
The Second WISSH Conference was organized in conjunction with the 4th National Blood Disorders Conference of the Centers for Disease Control and Prevention and the 2nd Global Sickle Cell Disease Network Conference. The purpose of the meeting was to apply quantitative and qualitative social research methods to understand the experiences of people living with sickle cell disease or thalassaemia and the contextual factors that can affect their individual well-being and shape the health, educational, legal, and social policies. Delegates came from North America, the Caribbean, Europe, the Middle East and Africa to advance this social agenda on sickle cell and thalassaemia. The conference was supported by the Global Sickle Cell Disease Network, with whom a joint poster session and reception was held, and by the Thalassaemia International Federation whose letter of support was read out at the outset of the conference.
The invited plenary speaker was Camara Jones of the Epidemiology and Analysis Program Office at the Centers for Disease Control and Prevention, who emphasized the public health implications of racism and poverty for framing the experiences of people living with sickle cell or thalassaemia. In the sessional papers, a wide variety of social issues were covered. Papers were presented on how stigma and discrimination affect people with sickle cell in Jamaica, the UK and the USA respectively. One session addressed thalassaemia issues including cultural competency, international patient beliefs about transfusion and chelation therapy, and the prospects for building social science data bases for the hemoglobinopathies. The views of community members across several countries on sickle cell carriers were reported by speakers who noted the situation with regard to sickle cell trait in such countries as Ghana, Kenya and the USA. Reports on the illness experience of sickle cell were made from evidence gathered in Senegal, the USA and in the UK.
The issue of inequitable resource allocation was central to a number of papers, from interaction of the burden of poverty with sickle cell in the UK; the experience of African immigrant communities in Italy, through to experimental models of preferred resource allocation to sickle cell in the USA. A concluding session on learning from history covered the human face of sickle cell disease in the early twentieth century; the media and misconceptions about sickle cell trait and the history of sickle cell disease advocacy in the USA.
The conference attracted 80 representatives from the USA, Brazil, UK, Italy, Jamaica, Nigeria, Kenya, and Uganda, and was attended by clinicians as well as social scientists from the fields of sociology, social and public policy, psychology, behavioral science, social history, human geography, health economics, genetics, and epidemiology.
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