Introduction

Note from the Meeting Presidents

Over the past 10 years, Brazil has substantially engaged in the global sickle cell disease (SCD) scene to help promote social awareness and develop effective public policies with the ultimate goal of changing the natural history of the disease.

The country’s worldwide positioning begins in 2006 with Brazil’s presence in international SCD events. The Congress of the Sickle Cell Disease International Organization (SCDIO-OILD) that year in Dakar (Senegal), and the International Congress on SCD in 2009 (Cotonou, Benin), the precursor event to the creation of the Global Sickle Cell Disease Network (GSCDN), were remarkable for the introduction of Brazil’s national policy for persons with SCD, demonstrating the Brazilian government’s commitment to SCD.

While strengthening its international image, Brazil has become more and more present in global SCD efforts, such as when it participated in the creation of the “International SCD day” at the United Nations headquarters in New York in 2010. In addition, Brazilian representatives attended some important international meetings, such as the GSCDN in Atlanta, USA, in 2010, when the Worldwide Initiative on Social Studies (WISSH) joined forces with the GSCDN to focus on issues surrounding social aspects of SCD.

In 2012, Brazil was recognized as the country that most advanced the implementation of public policies for the comprehensive care of individuals living with SCD. As a result, Brazil was awarded the privilege and honor to host two of the most important international gatherings in SCD: the global congress of SCD and the WISSH international conference.

The scientific committee, in partnership with the Ministry of Health of Brazil, is pleased to invite you to participate in the 2nd Global Congress on Sickle Cell Disease and the 3rd International WISSH Conference in Sickle Cell and Thalassemia: A view from the South Hemisphere to be held November 11 to 14, in Rio de Janeiro, Brazil.

Clarisse Lobo
Joice Aragão

About the 2nd Global Congress on Sickle Cell DiseaseClosing the Gaps in Sickle Cell Disease Programs Worldwide

The Second Global Congress on Sickle Cell Disease will be held from November 11 -14, 2014 in Rio de Janeiro, Brazil. The 2nd Global Congress is organized in partnership with the Government of Brazil, and will include scientific meetings of the Global Sickle Cell Disease Network (GSCDN), and the Worldwide Initiative on Social Studies of Hemoglobinopathies (WISSH).

The Global Congress will bring together leading medical and social scientists; public health officials with civil society, people with sickle cell disease, and their families, to come together in Rio to learn from each other and to continue to work together to find solutions to the many problems posed by sickle cell disease.

The inaugural Global Congress on Sickle Cell Disease endorsed the formation of the World Sickle Cell Disease Federation. Through the creation of a global federation successful programs can be linked with those requiring support, in order to close capacity gaps and ensure the development of effective programs to reduce mortality and improve the health of people with sickle cell disease worldwide. The 2nd Global Congress seeks to inaugurate the World Sickle Cell Disease Federation, in Rio de Janeiro, November 2014.

In July 2010, Accra, Ghana, the inaugural Global Congress on Sickle Cell Disease was held. The first Global Congress called on Member States of the World Health Organization (WHO), international funding institutions, development agencies, the pharmaceutical industry and the global health-care community to support primary-care level management of persons with sickle cell disease, through the promotion and use of simple and affordable technologies. The Global Congress urged governments and partners to increase and widen access to primary care, in order to reach a greater number of communities, on a larger scale. Further support must also be given to support linkages to secondary and tertiary level care.

In the four years since the first Global Congress was held much progress has been reported in the reduction of mortality in children with sickle cell disease. Survival estimates of more than 90% by age 20 years have been reported in high-income countries with public health systems that support people with sickle cell disease.

However, sub-Saharan Africa, home of more than 75% of children born with sickle cell disease in the world, continues to lag far behind with estimated 50-90% mortality of young children. (Grosse, et al. Am J Prev Med 2011;41(6S4):S398 –S405) This high rate of mortality is likely to delay the ability of sub-Saharan African countries to achieve the United Nations Millennium Development Goal (MDGs) target number four: to reduce the under-five mortality rate by two thirds, by 2015.

Further progress has been achieved in the increasing numbers of countries beginning to implement newborn screening programs, including in Africa, the Caribbean, and districts in India.

In addition to reducing mortality, the increasing use of chronic transfusion therapy and hydroxyurea (hydroxycarbamide) therapy is helping to reduce morbidity of sickle cell disease. Yet these therapies are often unavailable where the need is greatest.

The global health community must further consider how best to ensure those with sickle cell disease are given appropriate opportunities in education and employment, and support in having families of their own. Increased investment in the development of social science research programs will be key to achieving this goal.

The Global Congress On Sickle Cell Disease incorporates the open scientific meetings of the Global Sickle Cell Disease Network (GSCDN ) and Worldwide Initiative on Social Studies in Hemoglobinopathies (WISSH).

The organizers extend an invitation to attend to all interested parties, including:
• medical and research scientists; public health officials;
• social science researchers (sociology, social policy, nursing, social work, social epidemiology, politics, health services research, health economics, social history, medical humanities, anthropology, psychology, human geography, law and ethics);
• national, international, and community-based sickle cell organizations;
• other non-governmental organizations (NGOs); and,
• people with sickle cell disease and their families.

For further information, please contact:
tel +55 21 2505-0750 r: 2141
email: cdi@hemorio.rj.gov.br

Isaac Odame