Initiatives to address leprosy as a human rights issue through the mandate of UN Special Rapporteur: Achievements and challenges.

Leprosy, or Hansen's disease, is one of the oldest infectious diseases in the world. It has long been associated with stigma and discrimination, but only in recent years has this aspect been formally recognized by the international community as a human rights issue. The UN Human Rights Council first adopted a resolution on leprosy in 2008, and this was later followed by a UN General Assembly resolution in 2010. Nonbinding principle and guidelines on elimination of discrimination against persons affected by leprosy and their family members accompanied the 2010 resolution, but these have yet to be fully implemented. In 2017, the Human Rights Council appointed a Special Rapporteur on leprosy to investigate the extent to which the principles and guidelines have been implemented, and her term was extended for a further 3 years in 2020. Considering the proper implementation of the principles and guidelines to be key to eliminating the discrimination that persons affected by leprosy and their families face in various parts of the world, this paper looks at the contribution the Special Rapporteur can make. Based on an assessment of her activities to date, it concludes that the Special Rapporteur has actively worked to build networks with persons affected by leprosy and related organizations and gain their trust, but has faced challenges in organizing official country visits. It goes on to analyze what sort of legacy the Special Rapporteur should aim to leave behind after completing her second term and how she can go about doing so in the time remaining. To this end, it makes 5 suggestions: (1) gather information systematically on the actual situation of discrimination; (2) compile a collection of success stories; (3) ensure that there is consistency between legally binding international covenants and treaties and the principles and guidelines; (4) present proposals for concrete actions that can be taken after the Special Rapporteur's second term ends; and (5) initiate a feasibility study on creating an "index" and "indicators" to measure the current status of stigma and discrimination and the extent to which the principles and guidelines have been implemented.

O que é ser Relatora Especial na ONU? - iH Entrevista Alice Cruz

Nessa entrevista com Drª. Alice Cruz, Relatora Especial das Nações Unidas para Eliminação da Discriminação contra as Pessoas Afetadas pela Hanseníase, ela conta um pouco sobre o que é esse trabalho e as situações pelas quais ela passa nessa tarefa.

A Situação da Hanseníase no Contexto da Pandemia de Covid-19 - iH Entrevista Alice Cruz

Nessa entrevista com Drª. Alice Cruz, Relatora Especial das Nações Unidas para Eliminação da Discriminação contra as Pessoas Afetadas pela Hanseníase, ela explana e debate a situação dos países e seus programas em relação à hanseníase frente a pandemia de Covid-19.

United Nations Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, Alice Cruz - Visit Brazil

Relatório da Relatora Especial das Nações Unidas, Alice Cruz, para a Eliminação da Discriminação contra as Pessoas Afetadas pela Hanseníase e seus Familiares. Brasília, 14 Maio de 2019. Disponível nos idiomas inglês e português.

Reportable neurologic diseases in refugee camps in 19 countries.

BACKGROUND: Approximately one-third of refugees worldwide live in refugee camps. Selected neurologic diseases are actively reported in some refugee camps. METHODS: The United Nations High Commissioner for Refugees monitors health visits in refugee camps with the assistance of more than 25 partner organizations using standardized case definitions. Neurologic diseases were selected and searched for the years 2008 to 2011. The number of health care visits for a neurologic disease was calculated and divided by the aggregated number of reporting months available for each refugee camp ("visits per camp-month"). RESULTS: Five neurologic diseases were reported from 127 refugee camps in 19 countries. Visits for chronic, noncommunicable diseases including epilepsy (53,941 visits in 1,426 camp-months, 48% female) and cerebrovascular disease (4,028 visits in 1,333 camp-months, 51% female) far exceeded those for neurologic infectious diseases (acute flaccid paralysis/poliomyelitis, 78 visits in 3,816 camp-months, 42% female; leprosy, 74 visits in 3,816 camp-months, 66% female; meningitis, 477 visits in 3,816 camp-months, 51% female). In 2011, these diseases accounted for 31,349 visits globally with 91% of visits for epilepsy. CONCLUSIONS: Targeted programs addressing epilepsy and stroke among refugees in camps should become a priority and indicate that other chronic neurologic diseases that may be under- or misdiagnosed may also be common in refugee camps. Given that significant under-reporting is likely, our findings demonstrate the pressing need for coordinated preventive and interventional measures for epilepsy and stroke in refugee camps.

The participatory development of international guidelines for CBR.

PURPOSE: The CBR Guidelines are being developed by UN Agencies and civil society groups including disabled people's organisations (DPO). The aim of the CBR guidelines is to enhance the quality of life of people with disabilities including those affected by leprosy. Strong linkages between leprosy programmes and CBR will optimise the benefit of medical care and ensure leprosy-affected people access all relevant services that promote inclusion and participation. BACKGROUND: The World Health Organisation introduced the concept Community Based Rehabilitation (CBR) in the early 1980s. CBR was designed to enhance the quality of life for people with disabilities through community initiatives. To facilitate this, WHO published a CBR Manual 'Training in the community for people with disabilities' in 1989. Since then there have been many developments within and outside the disability sector. Based on these global developments and as a result of stakeholder consultation, ILO, UNESCO and WHO updated the CBR Joint Position Paper (2004) and restructured CBR as a strategy for rehabilitation, equalisation of opportunities, poverty reduction and social inclusion of people with disabilities. The purpose of this Joint Position Paper was to describe and support the concept of CBR as it is evolving, with an emphasis on human rights and a call for action against poverty. The Convention on the Rights of Persons with Disabilities aims to ensure that they enjoy human rights on an equal basis with others. Guidelines on how to implement CBR respond to the demands created by the publication of the Joint Position Paper and The Convention on the Rights of Persons with Disabilities. RESULTS: The CBR Guidelines are being developed by three UN agencies: WHO, ILO and UNESCO. It is being actively supported by 13 International Non Governmental Organisations (NGO) including Disabled People's Organisations (DPO). Over 150 experts from across the globe have contributed to the draft guidelines which are being field tested in 25 countries. The guidelines have five major components: health, education, livelihood, social and empowerment. Beside these five components, the Guidelines also focus on management of some special scenarios including CBR and HIV/AIDS, CBR and leprosy, CBR and mental health and CBR in crisis situations. The CBR guidelines also underline that people with leprosy-related disability are seen as members of the disability community in the wider context given the shared experiences and challenges. CONCLUSIONS: The CBR guidelines are an important step forward in promoting CBR as a community based inclusive development strategy. The guidelines focus on meeting basic needs, reducing poverty, accessing benefits of mainstream developmental initiatives, inclusive community and empowering people with disabilities and their families. It also focuses on implementing the Convention on the Rights of Persons with Disabilities using community-based initiatives. People with leprosy are often neglected by traditional CBR programmes. These guidelines make the case for including people with leprosy in CBR programmes and in the community.

Global and local contexts: the northern Ogoja leprosy scheme, Nigeria, 1945-1960

A missäo católica Ogoja Leprosy Scheme aplicou, em nível local, os conhecimentos internacionais de ponta em lepra, com sucesso e resultados abrangentes, graças ao apoio finaceiro de instituiçöes missionárias da Irlanda, da Grä-Bretanha e dos Estados Unidos, assim como de organizaçöes internacionais como o British Empire Leprosy Relief Association (BELRA). Tirou proveito também de avanços ocorridos no domínio da saúde pública internacional sob os auspícios da OMS e Unicef, na década 1950. O presente artigo combina a apresentaçäo de um bem sucedido programa de controle da lepra, por obra de missionários, com a análise sobre como as políticas médicas internacionais modelaram os parâmetros de sucesso e desenvolvimento de conhecimentos terapêuticos na Nigéria, no final do período colonial.

Making sense of rehabilitation projects: classification by objectives.

Rehabilitation of disabled persons can take many different forms according to the socio-cultural and political context in which it is undertaken. Some approaches have emphasized the restoration of the physical function of the client, while others have looked beyond to psychological and social well-being. Some have built on the expertise of professionals while others have emphasized the caring capacity available in the family and the community and sought to reinforce it. Besides providing a wide range of possible services to disabled persons, rehabilitation seeks to change the attitudes that prevail in society as a whole and promote the integration of disabled people into society with equal rights and opportunities. This paper reviews a range of models and approaches which have been put forward in the international debate on rehabilitation. Furthermore, four dimensions are described which can be used to characterize and define classes of rehabilitation projects based on the objectives that are defined for them. Thus types of rehabilitation projects can be distinguished. Management, evaluation and technical support for rehabilitation projects need to take these essential characteristics into account.

New tools for leprosy control.

PIP: The World Health Organization (WHO) is working to reduce the prevalence of leprosy to under 1 case/10,000 people in all endemic countries by 2000. Efforts are underway to eliminate leprosy rather than eradicate it because of the current lack of tools with which to eradicate leprosy. The major problem with existing skin test reagents to identify carriers of Mycobacterium leprae, the causative agent of leprosy, is their lack of specificity and tendency to cross-react. With a long-term view toward eradicating leprosy, the UNDP/World Bank/WHO Special Program for Research and Training in Tropical Diseases (TDR) has been supporting the development of a skin test which will be specific for only leprosy. One immediate benefit of developing and using such a test would be the ability to immediately monitor the effect of multidrug therapy upon the circulation of M. leprae in given communities. A potential problem for the peptide-based skin tests being pursued is the genetic variation in antigen recognition which may exist in different human populations. Candidate peptides will be tested in different leprosy-endemic areas of Asia, Africa, and Latin America, with the skin test eventually either tailor-made for a given geographic area or containing a mix of several peptides representing all regional preferences.^ieng

In sickness or in health: TDR's parners. 7. Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

PIP: Mahidol University's Faculty of Tropical Medicine, Bangkok, Thailand, established in 1960, is one of 14 faculties, 5 institutions, 5 centers, and 2 colleges within Mahidol University. It consists of the following departments: Helminthology, Medical Entomology, Microbiology and Immunology, Protozoology, Social and Environmental Medicine, Tropical Hygiene, Tropical Medicine, Tropical Nutrition and Food Science, Tropical Pediatrics, Tropical Pathology, and Tropical Radioisotopes. The UNDP/World Bank/WHO Special Program for Research and Training in Tropical Diseases (TDR) has been associated with the Faculty since 1977, collaborating mainly upon malaria research, but also in filariasis, leprosy, and schistosomiasis research. Early TDR support was directed at research training and institutional strengthening, although by the early 1980s, the Faculty played an increasingly important role in TDR's research and development program. In recent years, the Faculty has focused upon researching malaria, parasitic and bacterial diseases, nutrition and food sciences, and environmental health. The Faculty's malaria-related research is described. The Faculty also conducts research in many other areas of tropical medicine outside of those of interest to TDR.^ieng

Four TDR diseases can be "eliminated".

PIP: A UNDP/World Bank/WHO Special Program for Research and Training in Tropical Diseases (TDR) expert meeting has concluded that the means already exist with which to eliminate 4 of the 8 diseases which TDR originally identified as public health problems. Elimination in this case refers to reducing the number of cases of disease to a small and routinely manageable number. The diseases capable of being eliminated with existing tools are leprosy, onchocerciasis, lymphatic filariasis, and Chagas disease. Leprosy can be eliminated through the use of multidrug therapy, onchocerciasis through the administration of ivermectin, lymphatic filariasis through the use of DEC and ivermectin, and Chagas disease through the rational use of insecticides and the control of blood banks. Malaria, schistosomiasis, leishmaniasis, and African trypanosomiasis, however, must await better tools before their elimination can be attempted. TDR's role in identifying how to eliminate each of these diseases is described. Meeting attendees identified additional avenues of operational research upon which TDR should embark.^ieng

United Nations and nongovernmental organizations. Healthy skin for all.

The International League of Dermatologic Societies, the International Foundation for Dermatology, and the International Society of Dermatology: Tropical, Ecological, and Geographic, are the leading nongovernmental dermatology organizations that communicate with United Nations agencies such as the World Health Organization and UNESCO. The common goal of health for all must include healthy skin for all, and it therefore must include concepts such as primary health care, disability, wound healing, and advancement of women as well as the control and elimination of specific diseases such as leprosy.

Leprosy: an urgent need to step up use of MDT in Africa.

PIP: 10-12 million people in the world have leprosy. India claims about 4 million of these cases. Overall at least 20% of the cases are children. In the 1940s, dapsone was the only drug used to treat leprosy. By the early 1970s, dapsone did not perform as expected and Mycobacterium leprae were beginning to exhibit resistance to dapsone. In 1982, WHO published results of its study which recommended fixed and relatively short duration regimens of multiple drug therapy (MDT) for all people with leprosy. It also listed recommendations on diagnosis, classification, and distribution of patients to either pauci or multibacillary groups. MDT depends on what type of leprosy patients have. For example, patients with multibacillary leprosy receive rifampicin, clofazimine, and dapsone whereas those with paucibacillary leprosy receive only rifampicin. In many African countries, however, MDT is not used. Yet cases of leprosy exist in 94% of Africa's countries. Moreover 37% have highly prevalent leprosy and the lowest percentage of patients on MDT (18% vs. world average of 56%). In fact, Nigeria is included in the group of 5 countries with 84% of all cases. Until the various countries in Africa can satisfy the ideal requirements for establishing a MDT program, they should begin MDT at least on a small scale. They do need, however, an adequate supply of the drugs. The other requirements include a good plan of action, laboratory facilities, transport, and referral centers. If the period of time needed to meet these requirements is long, then physicians should conduct pre MDT screenings to diagnose cases and determine who needs chemotherapy. The best way to diagnose cases is from clinical experience and paying particular attention to dermatological and neurological findings. Early identification is needed since leprosy cases are stigmatized. This article includes MDT dosages in adults and children.^ieng