New cases of leprosy “will definitely continue to be diagnosed” in the years ahead, acknowledges the International Leprosy Association (ILA), a professional society of physicians, scientists and organisations in related fields.
When the ILA convenes its 19th International Leprosy Congress in Beijing starting this weekend (18-21 September), experts will discuss the emerging role of technology and new tools in the campaign to eradicate a disease whose origin dates back to biblical times. Increasingly, leprosy is now referred to as “Hansen’s disease” in a move to erase its stigma.
Reports from 121 countries compiled by the World Health Organization (WHO) show that in 2014 (the latest available data), new cases of leprosy totalled 213,899, down from 215,656 in 2013 and 295,919 in 2005.
Three countries account for 81 per cent of the 2014 newly diagnosed and reported cases globally — India (125,785 cases), Brazil (31,064) and Indonesia (17,025).
The ten countries in South-East Asia reported a total of 22,579 cases in 2014, a drop of 21 per cent from 2005. The largest number of cases are in Indonesia, Myanmar (2,877) and the Philippines (1,655).
“Currently, I am doing what I can to make governments, the media and ordinary citizens aware of leprosy as a way to encourage early detection and treatment.”
Yohei Sasakawa, Nippon Foundation
In East Asia, China reported 830 cases, South Korea, 6, and Japan, 5. In South Asia, a 24 per cent decline was seen in the total number of cases, from 177,980 in 2005 to 135,174 in 2014, although Bhutan and Sri Lanka recorded increases.
Except in “a couple of countries”, leprosy had been “eliminated” as a public health problem globally in 2000 when the overall prevalence rate fell to less than the benchmark of 1 case per 10,000 persons. Over the past two decades, more than 16 million leprosy patients have been treated with the multidrug therapy (MDT) recommended by the WHO.
A different view
There are misgivings about the reported decline in new leprosy cases, however. An international symposium in Vatican City organised on 9-10 June by the Pontifical Council for Health Care Workers, Good Samaritan Foundation and the Nippon Foundation of Japan noted that the decrease “could have resulted from a decline in case-finding activities and reduced community awareness [about the disease]”.
“The increase in the rate of disabilities in new cases detected seems to support this explanation,” the symposium document said, adding that “it is essential to aim at early detection…particularly to child cases”.
The Vatican symposium also expressed concern about the “substantial risk of partly losing the expertise that has been accumulated over recent decades by leprosy experts, medical doctors and health workers in relation to Hansen’s disease”.
Grants for study and training may be needed for service providers and caretakers, including persons affected by the disease, argued the symposium, which was also supported by the Fondation Raoul Follereau of France, the Catholic group Sovereign Order of Malta, and the Sasakawa Memorial Health Foundation of Japan.
Nippon Foundation, a leading grant-giving organisation in Japan headed by Yohei Sasakawa, the WHO’s goodwill ambassador for leprosy elimination, underwrote the free supply of MDT around the world from 1995 to 1999. Since 2000, supplies have been provided by Novartis, the Switzerland-based pharmaceutical firm.
Thanks to free MDT, Sasakawa says, the integration of leprosy services into general healthcare services and the efforts of all involved, 16 million people have been cured since the 1980s.
“[But] while the number of patients has declined, there are still difficult-to-access areas such as city slums and mountainous regions, and high-endemic districts within countries. Currently, I am doing what I can to make governments, the media and ordinary citizens aware of leprosy as a way to encourage early detection and treatment,” Sasakawa tells SciDev.Net.
At next week’s leprosy congress in Beijing, scientific initiatives aimed at boosting leprosy control will be on top of the agenda. “We hope to discuss the latest advancements in leprosy science in order to translate them [to actual work] in the field,” ILA president Marcos Virmond tells SciDev.Net.
“We need translational research for us to improve the control of the disease and offer better care to those affected by it,” says Virmond, who is also director-general of the research organisation Instituto Lauro de Souza Lima in Brazil.
He adds that new technology in the treatment of the disease, including a “potential vaccine” and a shortened treatment regimen, the Uniform-MDT (U-MDT), will take centre stage at the conference.
Research on the potential vaccine is in advanced stages and experts will give updates on their work at the leprosy congress. “We are not sure when its applicability will be a reality,” Virmond says.
On the U-MDT regimen, which uses “a unique set of drugs” to treat all types of leprosy (as opposed to the different sets now used for two distinct types), Virmond says “an important impact will be not only in the treatment acceptability but also in the logistics [or the achievement of deliverables] of leprosy control programmes”.
Currently, patients showing negative skin smears, classified as “paucibacillary leprosy”, are given rifampicin and dapsone drugs, while those showing positive smears, classified as “multibacillary leprosy”, are administered a combination of rifampicin, clofazimine and dapsone. The multidrug approach is to avoid the development of resistance to a drug when used solely.
“The standard WHO-recommended MDT is quite effective and the U-MDT is a new way to offer treatment to patients. We hope that new clinical trials bring us new hope for shorter and even more effective regimens to treat the disease,” Virmond tells SciDev.Net.
Still another technological breakthrough expected to be highlighted at the ILA congress is the proposed introduction of chemoprophylaxis — the use of chemical agents — in leprosy control. Current research on this method points to “an important possibility to halt the transmission of the disease in certain conditions”, says Virmond.
“We need translational research for us to improve the control of the disease and offer better care to those affected by it.”
Marcos Virmond, ILA
Research on the use of chemoprophylaxis is now in full swing in certain countries although some experts argue for deeper studies into safety and ethical issues raised by some sectors, according to recent media reports.
Stigma and discrimination
Social exclusion remains a major challenge for leprosy patients and those who have recovered from the disease. Across the globe, violations of the rights of persons affected by leprosy are noted in the fields of education, work and marriage.
According to the WHO, stigma that surrounds the disease, along with a lack of awareness, leads people to delay seeking help. As a result, they are diagnosed too late to prevent life-changing disabilities.
Leprosy is caused by the bacillus Mycobacterium leprae which multiplies very slowly. It is “not highly infectious”, experts say, and transmission is through fluid droplets from the nose and mouth during close and frequent contact with untreated cases.
When left untreated, the disease can cause progressive and permanent damage to the skin, nerves, limbs and eyes — a sorry picture which could be the reason for the stigma and the discrimination against sufferers.
The WHO says diagnosis and treatment of leprosy is “easy” and most endemic countries are moving to integrate leprosy services into existing general health services. “This is especially important for those under-served and marginalised communities most at risk, often the poorest of the poor,” says the WHO.
Sasakawa laments that discrimination limits or denies leprosy patients, and even members of their family, opportunities for education and employment. The WHO goodwill ambassador has pursued a campaign of advocacy that in 2010 led to the UN General Assembly adopting a resolution on Elimination of Discrimination against Persons Affected by Leprosy and Their Family Members.
“I think countries are becoming more cognizant of the issue of discrimination,” Sasakawa tells SciDev.Net. “The focus is now on efforts to make the resolution viable.”
Sasakawa’s office has held five regional symposiums in different parts of the world to promote the UN resolution. He tells SciDev.Net he “would like to engage with individual countries where discriminatory laws and practices remain, so that these laws and practices will be abolished on the basis of the UN resolution. I intend to continue focusing on tackling both the disease and the discrimination”.
New WHO strategy
The ILA congress comes on the heels of a newly launched WHO five-year global strategy aimed at attaining a “leprosy-free world” by 2020. The programme puts emphasis on the need to sustain expertise and increase the number of skilled staff, improving the participation of affected persons in leprosy services, and reducing visible deformities as well as the stigma associated with the disease. Sasakawa says he rates the WHO programme “very highly”, particularly its target of “zero disability in new child cases and reducing the rate of newly diagnosed leprosy patients with visible disabilities”.
Three core objectives are identified in the WHO’s 2016-2020 strategy: strengthen government ownership, coordination and partnership; stop leprosy and its complications; and stop discrimination and promote inclusion.
Defining the next steps towards achieving these goals should already ensure that delegates to the Beijing leprosy congress will have a busy schedule.
This piece was produced by SciDev.Net’s South-East Asia & Pacific desk