September-October 2018, Volume 15, Issue 5
Broadening the Focus on Global Sickle Cell Efforts
Published on: September 25, 2018
September is Sickle Cell Awareness Month, and in a President’s Column written earlier this year, I highlighted initiatives through which the Society can make a difference, including parts of the world where the sickle cell disease (SCD) burden is greatest. I wrote about ASH’s efforts to launch a global program that seeks to reduce SCD-related mortality by promoting newborn screening and early intervention in sub-Saharan African countries. While there is still much work to be done, I would like to share some updates with you, and in particular, tell you about a trip I took this summer to Ghana, where on behalf of ASH, I connected with individuals and institutions who share our hope that newborn screening for SCD will be transformational in sub-Saharan African populations, much as it has been in the United States.
Our first stop was in Kumasi, the second largest city in Ghana. The newborn screening program in Kumasi that was launched more than two decades ago as a feasibility pilot with funding from the National Heart, Lung, and Blood Institute, has now grown to a network of 21 governmental and 14 private institutions. I saw firsthand the almost seamless incorporation of heel-sticks and data collection into primary care immunization sessions, and coordination of routine care and education for children in SCD clinics. The scope of this network was impressive, and ASH hopes to learn more about how aspects of the work in Ghana might be replicated in other sub-Saharan African nations. Next, ASH held a two-day meeting in Accra with hematologists from Ghana, Nigeria, Tanzania, and Zambia, and international stakeholders from Canada and the United Kingdom, to further develop a consortium. Our long-term goal is to reduce childhood mortality rates for SCD in the most hard-hit populations by introducing standard-of-care practices for screening and early intervention therapies at participating institutions. We hope that this will gradually expand in scope to reach more babies, create a framework for optimizing care, and facilitate introduction of disease-modifying therapies.
In honor of World Sickle Cell Awareness Day, which took place on June 19th, the Society launched a public awareness campaign on SCD in Africa through the promotion of new multimedia resources. Two videos, which took the form of a short documentary produced by ASH and a public service announcement created by the SCD Coalition, target the general public to dispute common myths about the disease and spotlight SCD resources, spreading the message about the importance of newborn screening. I encourage you to visit the coalition website and view them.
Lastly, ASH has worked with the SCD Coalition to publish the State of Sickle Cell 2018 Report Card. With input from individuals with SCD, health care providers, and global health leaders, the report card estimates progress made since 2016 in several key areas and identifies areas where more can be done. There has been measurable interval progress in professional education, research, access to care, and global issues, yet opportunities to make greater strides remain.
I trust we can all agree that the time is right for action in SCD, and that ASH is currently well-positioned to make an impact by improving outcomes. We continue to advocate for innovative strategies and new therapeutic interventions to reduce SCD-related morbidity and mortality domestically, while extending our reach beyond our national borders to insure that our global community also progresses.
This is a proud moment in ASH’s history, and I hope you will join me in applauding the many individuals who are working with us to make curing SCD a reality.
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