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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Unfinished Business

Beijing Congress tantalizes with talk of chemoprophylaxis, vaccines and more.

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Professor Zhang Guocheng (left), president of the China Leprosy Association, is presented with a scroll of the Great Wall by artist Peng Haidi as HANDA’s Michael Chen oversees the ceremony.

The 19th International Leprosy Congress was held in Beijing from September 18 to 21, hosted by the China Leprosy Association on the theme “Unfinished Business: stopping transmission, preventing disability, promoting inclusion.”

Some 1,450 delegates from 67 countries attended the four-day event, the second time in the congress’s nearly 120-year history that leprosy’s most important gathering of scientists and researchers has taken place in the Chinese capital.

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The formidable Book of Abstracts

Only three years had elapsed since the last congress in Brussels, after the International Leprosy Association took the decision to shorten the interval between congresses to reflect the increasing pace of leprosy research. Vindication came in the form of the 1,000-plus page Book of Abstracts.

Weighing a hefty 1.8 kilograms, it was testament to the scale of the proceedings. Once again, an ILC Congress offered up an astonishing breadth of scholarship across many disciplines, with papers addressing everything from whole genome sequencing of leprosy bacilli to “beer parties in the elephant grass”—an anecdote that came up in connection with life in Uganda’s colonial-era leprosy settlements.

STATE OF PLAY

Following on from Brussels, many delegates were keen to hear the latest on chemoprophylaxis, new diagnostic tests, vaccines and other tools to improve the fight against leprosy and its consequences. While progress is being made, many of these potential game-changers remain under development—and have their enthusiastic proponents as well as others who counsel caution.

Novartis shared evidence from its multi-country Leprosy Post-Exposure Prophylaxis program, which is looking at the feasibility of contact tracing and provision of preventative treatment for leprosy under routine conditions. Progress from the first 18 months of work in Cambodia, Indonesia, India, Nepal, Myanmar, Tanzania and Sri Lanka is demonstrating the operational practicality of integrating single dose rifampicin into routine control programs, but the impact will not be conclusively assessed until 2018 and some questions remain.

Uniform Multidrug Therapy, or U-MDT, was another topic to be spotlighted. The drug regimen currently being trialed is the same for different patient types and would make logistics and reporting easier. Here, too, the congress found opinion divided.

Where there was consensus was on the need to coordinate efforts against leprosy among different stakeholders. There were examples of this to be found at the congress, whose theme of stopping transmission, preventing disability, and promoting inclusion mirrored the WHO’s new five-year Global Leprosy Strategy for 2016 to 2020.

For its part, the International Federation of Anti-Leprosy Associations (ILEP) announced that it was aligning its indicators with those used in the new WHO strategy and was pursuing a “Triple Zero” campaign: zero transmission, zero child cases and zero discriminatory laws.

PLETHORA OF TOPICS

With preventing disability as one of this ILC’s themes, the critical issue of managing the painful and potentially disabling reactions that can develop during and after treatment was well covered in Beijing. In particular, the important work being undertaken by the ENLIST Group—an international collaboration of leprosy centers formed in 2012 with the aim of improving understanding of Erythema nodosum leprosum (ENL), a debilitating inflammatory reaction that can potentially affect 50,000 new leprosy patients a year, was highlighted.

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Three years after Brussels, delegates were back for more in Beijing: scientists are keen to meet each other more frequently to share their findings and discuss new protocols, according to outgoing ILA President Marcos Virmond.

Elsewhere, the benefits of mapping, a low-cost approach using available data from registers and surveys to show the distribution of cases and guide interventions, were discussed. A study from the Philippines, meanwhile, found mobile phones to be a time-efficient, cost-effective supplementary tool for monitoring patients, allowing for regular communication, “which makes patients feel that their role is important.”

Empowerment of another kind came in the form of self-help groups. A fascinating presentation by Hugh Cross about the Reclaim project in Nepal explored how such groups can evolve beyond their original purpose, building esteem for the wider role they play in their communities as well as boosting members’ self-confidence. “We believe that self-care is about much more than preventing impediments; it gives people a sense of control over leprosy,” he said.

From Mali came an important message about “capacitating communities in leprosy.” When the community is involved, early detection increases; and involving the community ensures the sustainability of leprosy services.

Meanwhile, a session on “Leprosy in the USA” revealed that leprosy is one of the few diseases for which the U.S. government provides free health care. The bad news is, as leprosy is unfamiliar to many doctors and the general population, there can be a delay of up to several years before the disease is correctly diagnosed.

Congress delegates were reacquainted with the SARI Project, which looks at how to measure leprosy-related stigma in the community, and were also introduced to the emerging field of inclusion research.

WELCOME PRESENCE

 

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Young scientists pose with their awards, joined by ILA officers and key partners.

History and human rights, subjects that now feel an integral part of the ILC Congress agenda, were well covered in Beijing, and the local organizing committee made sure to include a comprehensive overview of the history and the impressive achievements of leprosy control in China as a part of the opening ceremony.

Presentations by people affected by leprosy—who have “experiences that even the best research cannot replicate,” in the words of outgoing ILA Chairman Dr. Marcos Virmond—also lit up the congress. Among these speakers, Mathias Duck addressed the subject of UN Principles & Guidelines on elimination of discrimination against persons affected by leprosy and their family members. They represent an ideal, he said, “but we have to keep moving in that direction every year, every month, every week, every day so that everyone can see what inclusion means for them.”

Young scientists, including Satish Kumar Paul (see sidebar) were recognized for their work at an awards ceremony on the final day, which also saw the election of a new ILA president by the ILA General Assembly. Dr. Roch Christian Johnson of Benin, who is medical advisor to Fondation Raoul Follereau, will serve as ILA president for the 2016-2019 term.

Wrapping up the congress, Professor Zhang Guocheng, who headed the local organizing committee, said it had strengthened determination to tackle leprosy through international cooperation. “I am delighted to see that many experts from developed countries with low prevalence of leprosy are playing an important role in scientific and technical research. Countries that have eliminated leprosy are giving support to countries that still have issues.”

The 20th ILC is scheduled to take place in the Philippines in 2019. It will be fascinating to see how many steps closer to “finishing the business” the leprosy world will be in a little over a thousand days from now.