Novartis Foundation Leprosy dialogue event The last mile in leprosy : innovation, integration and collaboration

Brasilia, Brazil

Dr. Ann Aerts, Head of Novartis Foundation, Dr. Marcos Virmond, President of the International Leprosy Association, distinguished guests, ladies and gentlemen.

It is an honor and pleasure to co-host this dialogue event with the Novartis Foundation and the Ministry of Health of Brazil. As NGOs, The Nippon Foundation and Novartis Foundation have been fighting a common adversary, Hansen’s disease, with a common goal to put an end to the human suffering that it causes. The treatment of Hansen’s disease was transformed in the 1980s, when multidrug therapy was introduced. From 1995 to 1999, The Nippon Foundation provided a total of 50 million USD to the World Health Organization to make the drug available to patients worldwide, free of charge. This gave further drive to the global efforts to defeat Hansen’s disease and helped to drastically reduce patient numbers worldwide. From the year 2000, the Novartis Foundation has taken over this role and in effort to reduce patient numbers to zero, the provision of free drugs continues to this day. We, The Nippon Foundation, are proud to have made this joint contribution with the Novartis Foundation toward the elimination of Hansen’s disease.

The worldwide reduction in patient numbers was made possible by the collaborative efforts of many stakeholders. We might describe this as reaching the 99th mile of a 100-mile-long journey. However, like the old Japanese saying “the last mile of a 100-mile journey is only half way”, I believe there is still much to be done to finish this final 1 mile.

With the decline in patient numbers, Hansen’s disease has become a minor issue on the global health agenda. But what gives cause for concern is that this has led to a decline in funding and political commitment in places where they are both critically needed. Currently, endemic countries report a total of about 200,000 annual new cases and this figure has been stagnant for more than 5 years.

Of course, the leveling off of patient numbers could be due to increased detection from improved outreach. However, it is disconcerting that we are still seeing cases of disability when treatment is available free of charge and disability can be prevented if medication is taken early.

Hidden localized hotspots in hard to reach areas; loss of clinical expertise; decline in public awareness—it is clear that the challenges we are facing now are more multilayered and require not just cross sector collaboration but also innovative approaches that may call for greater resources.

Furthermore, as someone who has been fighting for the rights of people affected by Hansen’s disease, I believe fear of discrimination is also a contributor to delays in detection and treatment. I have met many individuals who had developed disability because they hid their disease from fear of being driven from their communities. Here in Brazil too, MORHAN—an advocacy organization for Hansen’s disease—operates a nationwide helpline where they receive calls and emails from people who fear they have contracted Hansen’s disease but are afraid to seek treatment.

One of the important goals of this two-day dialogue is to identify these key challenges and barriers and to think about what needs to be done to complete the last mile. The Novartis Foundation has called for Hansen’s disease to be put back on the global agenda. With endemic countries dispersed around the world, Hansen’s disease is still a global issue. Furthermore, countries that are no longer endemic still carry the problems of stigma and discrimination. Getting it back on the global agenda will surely invigorate all stakeholders to step up to the starting line for the final mile to a world without Hansen’s disease.

We all have our different parts to play in this global effort toward defeating Hansen’s disease. I myself am committed to sustaining political commitment through face to face meetings with country leaders and by organizing high-level summits for endemic countries. I am also committed to raising public awareness about Hansen’s disease and transmitting accurate knowledge through media and educational institutions. And The Nippon Foundation through a special fund we have established at the WHO is committed to supporting innovative programs.

I hope we will spend these two days to clarify our different roles, learn from one another, and explore where we may work together. Let us take a fresh step forward to end the human suffering caused by Hansen’s disease, once and for all.

Thank you.