PRESS CONFERENCE ON RAISING AWARENESS OF SICKLE-CELL ANAEMIA

Flagging sickle-cell anaemia as one of the world’s most common but most misunderstood health problems, a panel featuring African health ministers and medical professionals urged Governments, health workers and even families to use 19 June as an opportunity to raise awareness of sickle-cell anaemia in order to “bring this disease out of the shadows” and help improve the quality of life for people living with it.

At a Headquarters press conference this afternoon, Emilienne Raoul, Health Minister of Congo, highlighted an initiative launched by First Lady Antoinette Sassou Nguesso, who, for the past five years, had pleaded with officials and heads of global organizations to do more to raise awareness about sickle-cell anaemia.

A debilitating genetic blood disorder that causes the body to produce abnormal, sickle-shaped red blood cells, sickle-cell anaemia is particularly common among people with ancestors from sub-Saharan Africa, India and other regions where malaria was or remains common, and where the sickle-cell confers a survival value.

Ms. Raoul –- who was accompanied by Thérèse Coumba, Health Minister of Senegal; Justin Obam, Counsellor of Public Health of Equatorial Guinea; and Edwige Badassou, Chair of the Sickle-Cell Disease International Organisation -- said that Ms. Sassou Nguesso and Viviane Wade, First Lady of Senegal, had joined forces to help establish a centre in Brazzaville, the Congolese capital, to study the disease.  That effort had been effective in raising awareness of the disease “a bit”, and in bringing scientists and medical professionals together outside major health centres to discuss it, but it was clear that major international bodies like the United Nations must do their part.

That had led Congo, Senegal, Equatorial Guinea and some 21 other countries to co-sponsor a resolution adopted by the General Assembly in 2008, she continued.  The resolution called for the recognition of sickle-cell anaemia as a public health problem and “one of the world’s foremost genetic diseases”.  It also urged Member States and the United Nations system to raise awareness of the disease on 19 June each year, at the national and international levels.  To that end, the Permanent Mission of Congo had convened a day-long panel discussion at Headquarters under the theme “Nearly a century after the discovery of the sickle-cell anaemia: assessment and prospects”.

Ms. Coumba stressed that her country’s First Lady had urged that sickle-cell anaemia not only be made more visible, but that information about prevention, care and treatment be made a priority global health objective.  Mr. Obam added that the goal of today’s event was to set the stage for broad-based global advocacy about the disease, for which there was no known cure.  Ms. Badassou agreed that today marked a “real starting point and a hopeful vision about the future”, and greater visibility for sickle-cell anaemia.  The disease had long remained in the shadows and civic actors and concerned Governments depended on the media to raise awareness of its causes and treatment.  She urged Governments to promote awareness among national health workers and bolster support for other national and regional efforts.

Among the medical professionals present was Dr. Jacques Elion, of the Hôpital Robert Debré in Paris, who joined the calls for Government action, but stressed that doctors, health care workers and administrators also had a role to play, especially since the sickle-cell trait was hereditary and presented most often in early childhood.

Responding to questions, he said intensified efforts should aim, above all, to educate the largest number of people in any given community.  Indeed, wide swathes of the developing world were unaware of the disease, which impacted not only personal health management, but also local health systems, where practitioners and staff could be equally unaware of its symptoms or treatment options.  Families and the patients themselves should also play a role in disseminating information to the general population.  Agreeing, Dr. P.K. Patra of Ambedkar Memorial Hospital in India said it was time for stakeholders in all areas of expertise to “join hands to do the real work to sensitize public and Governments about care and treatment”.

Asked about the situation in his region, he noted that medical screening campaigns had revealed large numbers of people with the sickle-cell trait in central and southern India.  Most of them lived in largely rural areas and were unaware of the condition until they were informed about it.  A major effort was under way to sensitize those populations and make carriers increasingly aware of their options and of the need to inform potential marriage partners.

Dr. Elion also stressed the need for close scrutiny of drugs used to treat sickle-cell anaemia, warning that plant-derived treatments flooded markets throughout the developing world, largely with only word-of-mouth guarantees of “success”.  While there was no doubt that Governments needed to scale up research funding, all stakeholders must do their part to ensure that, when a drug showed signs of success, proper clinical trials were carried out in line with international testing standards before they were put on the market.

Also responding to questions, Dr. Ibrahima Diop from Senegal said the care and treatment of persons with sickle-cell anaemia had placed a heavy burden on his country’s health-care system.  The Government and civil society had stepped up awareness-raising campaigns, but much remained to be done.  Senegal was trying to use simple language to explain the disease and what the treatments might be, so that people could make the right choices, especially those considering marriage.  That scheme had been promoted in all ministries, religious centres and health-care facilities.  In addition, a “very powerful” film featuring the First Lady had been produced.

Noting that it was proving difficult for Governments in the developing world to earmark funds specifically for sickle-cell research and to get relevant programmes up and running, Ms. Badassou suggested that the global network set up to tackle malaria, to which the disease was linked, could be used to launch a more broad-based effort.

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For information media • not an official record