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Cross-Cutting Issues for Neglected Tropical Diseases Requiring Intensive Disease Management: Reducing Transmission, Preventing Disability, Reaffirming Dignity
Posted on 7 December 2012 by
Nicole Holmes, the only person among the 500 or so delegates attending this NTD conference who has personally experienced a neglected tropical disease, spoke eloquently and articulately at the ILEP Side Meeting and also had the opportunity to intervene during the main conference as depicted in this photograph. Nicole is a therapist and Co-ordinator of the International Association for Integration Dignity and Economic Advancement’s USA Support Group. IDEA’s leadership and membership is primarily composed of people affected by leprosy.
Photo © Henry Law
Responding to an invitation from Julie Jacobson of the Bill and Melinda Gates Foundation, the General Secretary of ILEP, Mr Douglas Soutar, seized this opportunity to hold a side meeting around their conference in Washington DC on Uniting to Combat Neglected Tropical Diseases: Translating the London Declaration into Action on 16th November 2012 to highlight the numerous cross-cutting issues that many of these diseases face ranging from detection and control to care, all areas of potential synergy and mutual inspiration.
Attended not only by representatives of organisations working in leprosy, but also by representatives of organisations working in other Neglected Tropical Diseases, this meeting proved to be beneficial to all. Referring to the exchanges made in the course of this meeting the President of ILEP, Mr René Stäheli, says: “We can really contribute with our expertise in morbidity and disability management, and in stigma, to name just two areas. But we can also profit from the experience that other disease communities bring in.” He noted the motivation to shift from approaches that are disease-specific to intervention approaches across various diseases, for example to facilitate and improve early case detection, in the interests of efficiency and maximising impact.
Presentations were made about progress with the development of a leprosy vaccine and on recent chemoprophylaxis trials and an overview of transmission, as well as on morbidity management, advocacy and rights, to stimulate exploration in wide-ranging discussions of common elements and approaches.
Mary Jo Geyer of the School of Health and Rehabilitation Services of the University of Pittsburgh emphasized how disability tends to result from inadequate management of morbidity complications, which leads to loss of mobility, decreased activity and participation restrictions and noted how diabetes, leprosy, Buruli ulcer and filariasis face similar complications and have similar needs. She estimates that 50-85% of limbs could be saved, particularly if these were managed on an intervention basis. She advocates developing and using more uniform training materials and methods and improving the capacity of care professionals to provide care for different diseases. She spoke of the Legs to Stand On initiative, in which international partners, including ILEP Members American Leprosy Missions and Netherlands Leprosy Relief, work together to specifically to improve lower limb care in low-resource settings, where there may be a lack of qualified health-care workers and their inequitable distribution, a rapid rise in impairments and limited economic resources.
Besides disability prevention and morbidity management, it was noted that the following areas also offer potential for collaborative efforts in dealing with Neglected Tropical Diseases:
patient education and self-care
stigma related issues
In Africa, particularly in those countries currently most affected by Neglected Tropical Diseases and where their ministries of health are clustering their control and management within Neglected Tropical Disease Departments, Mr René Stäheli, the President of ILEP, is of the opinion that it may be advantageous for ILEP Members supporting work in those countries to look for opportunities to synergise activities with other diseases requiring similar interventions to leprosy, so as to achieve greater cost-effectiveness and impact in improving health and alleviating poverty.
Legs to Stand On “Sustainable Solutions for Lower Limb Care: http://www.legstostandon.org/
An electronic repository and archive for materials on integrated limb care: http://archive4limbcare.org/
NB: More photographs taken 16th – 18th November 2012 during the NTD Conference are available on our Facebook page: ILEPAntiLeprosy