Neglected Tropical Diseases Hidden and silent : Key problems Complacency, lack of information and commitment The poor, with little political voice, suffer most Not perceived as a threat to western society Incapacitating more than killing Low profile in public health priorities Negative image, complicated names and complex strategies

Global distribution: the burden divides the world in two . Approximately 1 billion people are affected by more than one of NTDs

Large scale interventions Lymphatic filariasis Leprosy Onchocerciasis Schistosomiasis Helminthiasis Trachoma Yaws Rapid Impact Interventions Improving access Case management and development of new tools Human African trypanosomiasis Chagas diseases Buruli ulcer Leishmaniasis Focused interventions Improving innovation

The importance of the Right to health for the control of NTDs Advocacy: Participation of Paul Hunt in two international meetings on NTDs, and several meetings in WHO. Goodwill Ambassador Mr Sasakawa Help scientific community to focus thinking on strategies adapted to the local reality: Berlin and Bangalore Assessment at country level...Mission report in Uganda Specific recommendations to Governments, private sector, NGOs and international community If integrated into policies, programmes and projects, the right to health helps to ensure that they are evidence-based, robust, sustainable, equitable and meaningful to those living in poverty. Key role of the civil society, NGOs and people affected by NTDs

The case of Leprosy Leprosy is considered shameful and people hid their symptoms for fear of ostracism despite free and effective multidrug treatment. This chronic infectious disease usually affects the skin and peripheral nerves but has a wide range of possible clinical manifestations. Women in leprosy-endemic areas of the world, with few exceptions, suffer from marked economic and social dependency and inferiority which can only be heightened by the social stigma associated with leprosy. Nevertheless, they bear an enormous responsibility for the health of their families, often as head of the household, and they often possess a unique capacity to influence community opinion. Drugs used for multidrug therapy (MDT), are donated by Novartis and made available free to all affected countries through WHO. Since 1985, more than 15 million patients have been cured of leprosy through the use of MDT.

World Health Organization Leprosy situation in 2008 17 November 2018 Between 1985 and 2008, more than 15 million cases have been cured with MDT. The number of persons registered for treatment fell from 5.4 million in 1985 to 250 000 in 2008. Global case detection continues to fall every year Only 3 countries remain with prevalence rates above 1 per 10,000 population (1985: 122 countries): Brazil, Nepal and Timor Leste)

World Health Organization Registered prevalence by WHO Region in 2007 and 2008, and % change* 17 November 2018 Region Prevalence at beginning of 2007 Prevalence at beginning of 2008 % change from 2007 to 2008 Africa 29 548 30 055 +1.71% Americas 64 715 49 388 -23.68% East Mediterranean 3 986 4 240 +6.37% South East Asia 116 663 120 967 +3.69% Western Pacific 9 805 8 152 -16.86% World 224 717 212 802 -5.30% * Patients registered for treatment, excluding Europe

New case detection by WHO Region in 2006 and 2007, and % change* World Health Organization New case detection by WHO Region in 2006 and 2007, and % change* 17 November 2018 Region Cases detected during 2006 Cases detected during 2007 % change from 2006 to 2007 Africa 34 480 31 037 - 9.99% Americas 47 612 41 978 - 11.83% East Mediterranean 3 261 4 091 + 25.45% South East Asia 174 118 171 552 - 1.47% Western Pacific 6 190 5 867 - 4.20% World 265 661 254 525 - 4.19% * excluding Europe

Milestones in MDT treatment World Health Organization Milestones in MDT treatment 17 November 2018 Multidrug therapy (MDT) recommended as a standard treatment for leprosy by WHO in 1982, contains rifampicin, clofazimine and dapsone 1986: only 5% of registered patients on MDT 1991: World Health Assembly resolution to eliminate leprosy as a public health problem 1995: WHO started global supply of high quality MDT free of cost 1998 onwards : 100% of registered cases on MDT

MDT changes the face of leprosy World Health Organization MDT changes the face of leprosy 17 November 2018 Highly effective - cures patients in 6 – 12 months Single MDT dose renders patient non-infectious Best way to prevent disabilities through early cure Treatment is safe with few side effects No drug resistance following MDT has yet been reported The numbers of relapses after treatment remains very low, at less than one case per 1,000 patients per year.

But still a long way to go World Health Organization 17 November 2018 Stigma and discrimination are still present in developed and developing countries An estimated one million persons live with severe disabilities and are highly vulnerable Despite the medical progress and information, a significant number of countries have regulations aiming at isolating, limiting access to work, public transport, international travel, divorce 11

Key features of a right to health approach to neglected diseases Community participation Fighting stigma and discrimination Research and development An integrated health system that is responsive to local priorities Monitoring and accountability: monitor and hold to account national and international actors in the public and private sectors. The guiding question should be: have all duty-bearers done all they reasonably can to promote and protect the right to health of those suffering from, or vulnerable to, neglected diseases?