In 2008, the 63rd General Assembly of the United Nations adopted a  resolution recognizing sickle cell disease as a “public health concern”. The Assembly urged Member States and the United Nations organizations to raise awareness of sickle cell disease, “among the world’s foremost, and at times most lethal, genetic disease”, at national and international levels on June 19th of each year.  Ambassador Raymond Sege Bale, a Congolese diplomat and permanent Congo-Brazzaville representative to the United Nations, introduced the draft resolution on the recognition of sickle cell anemia as a public health priority (document A/63/L.63), saying:

 

Sickle-cell anemia was relatively unknown by the general public and, often, only those who had been directly touched by it or those who were part of the medical community knew anything about the hereditary disease. Yet, according to World Health Organization (WHO) estimates, sickle-cell anemia affected nearly 100 million people throughout the world and, if not treated in its early stages, was often fatal. Indeed, it was the cause of death of more than 50 per cent of those who suffered from the most lethal form of the disease.

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Though that was, without doubt, a disquieting picture, it was apparently not disquieting enough to remove sickle-cell anemia from its “medical ghetto” and draw the world’s attention to the disease. 

 

Adopting of the draft resolution would help to end the long isolation of the disease and, at the same time, bring the hope of future action to the 100 million people suffering from it. Bold actions aimed at resolutely and effectively attacking the disease would help alleviate the suffering of those affected. To that end, Ambassador Raymond Sege Bale welcomed the fact that 19 June of every year would be dedicated to raising public awareness of sickle-cell anemia at national and international levels.

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Continuing, he said the adoption of the draft would ensure the support of Member States and relevant partners for efforts to eliminate the disease, including through the strengthening of health care systems. In closing, he made an oral revision to the title of the draft, which reflected the consensus reached during consultations, so that it read “a public health problem” instead of “a public health priority”.

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[As paraphrased by the Dept. of Public Information from the original UN text delivered in the Ambassador’s native French.]

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Subsequently, June 19th has been set aside globally as a day to promote greater awareness of an illness that affects nearly 200,000 Americans and millions worldwide. This year World Sickle Cell day falls on a Saturday. People here in the U.S. and all around the world will take time on and around this day to recognize the first disease to have its molecular basis described, and yet 120 years later, remains an orphan disease with remarkably few treatment options and no widely obtainable cure.

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Nita Thompson is recognized as the U.S. coordinator for World Sickle Cell Day and the official web address for nation-wide events is http://worldsicklecellday.webs.com.  You may contact them to request that a flyer for your event be uploaded onto the site or to find local events in your community.  For more about this 24 hour marathon, contact Dr. Carolyn Rowley (carolyn@cayennewellness.org) or Dr. Lakiea Bailey (director@sicklecellconsortium.org).