During the sixth international conference on mycetoma in Khartoum, Sudan, delegates endorsed a “call for action” urging the global community to work together with multilateral agencies, partners, research institutions and pharmaceutical companies to address the devastating consequences of this disease.
“I am pleased to see this global conference shedding light on mycetoma, a disease that has been truly neglected and overlooked for too long, which has resulted in devastating consequences for poor and vulnerable populations,” said Dr Ahmed Al-Mandhari, World Health Organization (WHO) Regional director for the Eastern Mediterranean. “Tackling neglected tropical diseases is in line with our mandate to provide health care to everyone, everywhere.”
Mycetoma, a neglected disease characterized by disabling deformities that commonly affects the legs and arms, causing intense suffering, loss of function and impaired ability to work. It takes its toll on poor, rural populations, specifically those who walk barefoot and manual workers, such as agricultural laborourers and herdsmen.
“Sudan is committed to investing in a healthier environment to guarantee safer livestock and agricultural practices and to engaging with farmers and livestock herders to prevent injuries that can cause mycetoma,” said His Excellency Al-Khair Al-Nour Al-Mubarak, Federal minister of health of Sudan. “Appropriate guidance and support is needed to raise awareness about mycetoma, including information on prevention and the need to seek early treatment of all suspected cases.”
Diagnosis in the late stages of mycetoma, a disease of bacterial or fungal origin, can lead to amputation and permanent disability or even death.
“The suffering and disability caused by mycetoma have far greater consequences for families, socioeconomic lives and mental well-being as patients affected are often stigmatized,” said Professor Ahmed Hassan Fahal, Director of the mycetoma research centre in Khartoum, WHO’s only collaborating centre on mycetoma. “Its global distribution and disabling consequences require adoption of bold new initiatives and approaches to ensure appropriate, early diagnosis and access to enhanced treatment.”
Several global measures against mycetoma have been initiated since its recognition as a neglected disease in the 69th World Health Assembly in 2016. Some of these measures include: an assessment of current policies and practices in 164 countries, a global consultation to identify priority areas of work and the establishment of a global mycetoma working group.
Though little is known about the incidence and prevalence of mycetoma worldwide, documented cases show that Sudan reports one of the highest number of cases in the world. Other countries topping the list include the Bolivarian Republic of Venezuela, Chad, Ethiopia, India, Mauritania, Mexico, Senegal, Somalia and Yemen.
“It is important we set goals and milestones that can trigger collaborative research to develop the much needed tools and medicines to simplify diagnosis and treatment,” said Dr Mwelecele Malecela, Director, WHO department of control of neglected tropical diseases. “An essential first step could be to look at how we can integrate mycetoma interventions within primary health care delivery, particularly as part of measures targeting diseases that manifest primarily on the skin.”
Despite the mode of treatment of the disease not being fully identified, treatment is long and costly and outcomes are not often satisfactory. This discourages patients from reporting to health centres for care. Moreover, no rapid diagnostic tests are available for use within the primary healthcare system.
The Drugs for Neglected Diseases Initiative (DNDi) is investigating the efficacy of fosravuconazole, as a medicine that can be used to treat the disease. If the drug is successful, it could provide a short, cost-effective therapeutic protocol and increase compliance with treatment for mycetoma.
Currently, enhanced public awareness, early detection of cases as well as continued care and treatment are the only strategy to reduce the severity and consequences of mycetoma.