[28 May 2016 – Geneva, Switzerland]
Move helps bring the disease to the attention of governments and funders
By adding the devastating infection mycetoma to WHO’s official list of ‘neglected tropical diseases,’ WHO Member States took an important step in boosting national and global responses to this woefully neglected disease and addressing the suffering of patients.
“Including mycetoma on the WHO List gives the disease the political prominence it so desperately needed. Funding bodies can now consider taking up the disease. It will also allow global programmes to be set up, which would better define the epidemiology, the risk factors, as well as treatment strategies, and early identification of cases,” said Dr Nathalie Strub Wourgaft, DNDi Medical Director.
Mycetoma is a devastating, slow-growing bacterial or fungal infection, which develops into a chronic infection of the skin tissues and, if left untreated, eventually results in amputation. Children and young adults are particularly at risk. With existing anti-fungals and surgery, only 35% of people living with the fungal form of the disease, known as eumycetoma, are cured. Infection can come from the soil or animal dung, and it is thought that it enters the body after the skin has been pricked, for example by a thorn.
“Mycetoma patients are among the most neglected of the neglected. They are poor, stigmatized, and often live in remote and rural areas. Today’s decision is a recognition of their plight. We have been struggling for international recognition of mycetoma because we cannot fight this alone. The only way we can truly help these people is by bringing in resources from the global health community,” said Dr Ahmed Fahal, Professor of Surgery at the University of Khartoum and Director of the Mycetoma Research Centre (MRC).
Eumycetoma patients have received little attention and virtually no research and development has addressed their needs to date.
“There is a desperate need for safe, effective, and affordable treatments; rapid and accurate diagnostics; and a good deal more epidemiological data needs to be collected in the entire ‘Mycetoma Belt,’ in countries like Brazil, Chad, Ethiopia, India, Mexico, Senegal, Somalia, Sudan, and Yemen,” said Dr Nathalie Strub Wourgaft.
Together with Japanese pharmaceutical company Eisai Co., Ltd, and the MRC, DNDi will soon be launching a clinical trial for fosravuconazole, a potential new treatment of eumycetoma.
DNDi and the MRC acknowledge the work of many in achieving this greater political recognition for mycetoma.
“On behalf of my dedicated staff at the MRC and the thousands of patients that have entered our doors, I would like to thank all of the advocates that have joined us in achieving this victory. This is a truly an example of global solidarity, where people from around the globe joined forces – putting aside politics, religion, and region – to help neglected patients from Sudan and other afflicted countries. We have seen the birth of the ‘Mycetoma Movement.’ Now is the time to get to work,” said Dr Ahmed Fahal.
To learn how a simple thorn prick can lead to this debilitating and fatal infection, please visit the DNDi microsite that describes the disease, the lives of people affected, and the work and staff of the MRC.
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