On November 20, 1989 was adopted the United Nations Convention on the Rights of the Child with the hope of providing all children of actual rights.
In November, 2009, 20 years later, the majority of countries have ratified this Convention. Paradoxically, the right to health of children with sickle cell disease is not much respected in most countries...
On this celebration of Childen's Day, the SCDIO denounces this failure, and would strongly reiterate that beyond the most publicized diseases, sickle cell disease remains suffering from ignorance. Media rarely report on this disease. The struggle for the defense and promotion of children must be realized through denunciation of such ignorance of children affected by SCD.
The international community must no longer remain inactive because although this disease is a direct consequence of malaria and nothing is done to improve daily monitoring of affected children.
According to WHO, over 120 million people are affected by sickle cell disease in the world; more than 500 000 newborns each year with this disease, 50% of them die before their fifth birthday due to the lack diagnosis and appropriate care.
Despite the progress made by Northern Countries in the management of the disease, access to care remains expensive and inaccessible in most countries.
• Globally, the political will and resources are almost inexistent ,
• Poor families can not cope with the disease, and they do not receive aid from governments
• 80% of the millions of children living with sickle cell disease in countries with low or intermediate incomes do not benefit from appropriate care.
Governments and international institutions should devote at least 10% of funds allocated to the fight against malaria and genetic diseases to fight effectively against sickle cell disease in the world.
This is to address this serious public health problem that SCDIO has implemented a comprehensive strategy. The SCDIO supported by some governments has initiated 8 years resolutions that have led to the recognition of this disease as a health priority by the international institutions (African Union, UNESCO, WHO and the UN), therefore a plan of 'Five-Year Action has been developed.
The five-year action plan of the SCDIO has planned a series of related programs that will break the cycle of child mortality due partly to lack of essential care. This disease has very few financial resources; that's why SCDIO launches on 20 November to 15 December 2009 an international awareness and fundraising campaign in order to implement its various programs:
1. Vaccinate more than 100 000 children to prevent infections
2. Detect more than 100 000 newborns
3. Fit over 1,000 hip prostheses
4. Equip and build sickle cell centers
5. Create sickle cell disease "houses"
6. Fund Research
For Edwige EBAKISSE-BADASSOU Chair SCDIO "Through this campaign DREPADON, the international community will help millions of children who suffer and die in anonymity. They eagerly need a real mobilization of all so as to ease their pain. You can give us means to save them because we can do nothing alone, but together we shall achieve any goal... "
Children's rights also mean the right to healthy live and grow throughout their childhood and adolescence. A healthy child is a child who can go to school, play and express himself. Together, let's remember the children with sickle cell disease and mobilize common actions.
Take part in the DREPADON 2009! www.drepadon.org
Contact Press
Evy DALLY Tel: 0149011354/1362/1361 21 Rue Godefroy 92800 Puteaux FRANCE
info@drepaneworld.org
WWW.DREPADON.ORG
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