Position paper
Strengthening participation of persons affected by leprosy in the leprosy services
Introduction
Leprosy is an ancient disease, which through millennia has drastically influenced the lives of those affected by it. History recounts that the fear of contagion was so great that isolation was almost universally applied. The WHO introduced multidrug therapy (MDT) in early nineteen eighties which would later prove to reduce prevalence. In 1991 the World Health Assembly called for action to effect the elimination of leprosy as a public health problem by 2000 (elimination being defined as a reduction in global prevalence to less than one case per 10,000 population). That target was attained. Although the elimination of leprosy as a global public health threat was attained; Leprosy still exists. It is prudent to recall the observation of Mr. Yohei Sasakawa, WHO Goodwill Ambassador for Elimination of Leprosy; he said: “We have reached the last mile of our 100-mile journey. But this last mile will be the most difficult to travel. We must keep moving and not falter"[i].
Current leprosy situation
In 2014 WHO annual leprosy statistics showed that 213, 899 new cases, from 121 countries were recorded for the year 2014. Nearly every tenth patient was a child and more than five percent of all new cases had visible impairments, classified as Grade 2 disabilities (D G2). Patchy distribution of the disease was evident with 94% of the global new case load in 13 leprosy endemic countries.[ii] What is alarming was that the trends in the number of new cases, new cases with DG2 and new child cases were found to have continued at almost the same level over the previous ten years. The treatment completion rates declared in that report ranged from 55% to 100%.
Insight from the data
MDT made a significant impact on prevalence of leprosy and in new case detection rates in a number of countries. In a small number of countries, however, prevalence has remained high and new case detection rates have remained static. The data also suggests that in endemic countries leprosy is becoming more concentrated and that it tends to be isolated in high endemic pockets. Leprosy is gradually becoming a focal disease. The continued occurrence of new cases and particularly new child cases, however, suggests intense transmission of infection. Reporting of new cases with DG2 indicates delay in detection, which is generally thought to be due to low awareness in the community or to inadequate access to services. Early detection and improving / sustaining awareness remain key tenets for focussed leprosy elimination interventions. Competing health priorities, stagnation in leprosy control, lack of effective strategies for prevention of leprosy, reducing commitment of implementing agencies and decreasing leprosy treatment skills among health workers are gradually having a negative influence on the pace of leprosy control activities.
The transmission of infection must be interrupted in high endemic pockets, and all hidden, undetected and untreated leprosy cases need to be brought under MDT. Frontline health workers, however, have multiple responsibilities, so an alternative to conventional approaches that augment health delivery must be introduced. Strengthening the participation of persons affected by leprosy in the communities in which they live will prove to be a productive strategy that will enhance leprosy control endeavours .
Strengthening participation of persons affected
The concept of involving communities in planning and carrying out health services is not new to primary health care or to disease control programmes. The Alma-Ata declaration emphatically states that “the people have the right and duty to participate individually and collectively in the planning and implementation of their health care[iii]. Community involvement in various settings has demonstrated an ability to improve not only health outcomes, but also equity, service access, relevance, acceptability, quality and responsiveness (Jamkhed experience[iv]).
Leprosy programmes have a wide ranging stakeholder base: persons affected by leprosy, non-government organisations (NGO), International Federation of Anti-Leprosy Associations (ILEP), World Health Organization (WHO), Novartis Foundation for Sustainable Development (NFSD) and The Nippon Foundation (TNF). All these bodies support national programmes in the reach to attain the shared goal of leprosy-free world.
Persons affected by leprosy, having experienced the disease and discrimination associated with it, bring passion to the work; they are also known to improve the effectiveness of programmes, but until now their contributions have passed without significant recognition or appreciation. Effecting the mobilisation of people affected by leprosy should not be considered an act of indulgence; it will be an essential part of the machinery that will bring about a much needed improvement in leprosy control. The full potential for impact on leprosy control initiatives that this body of stakeholders can have is an issue that should be assessed without delay.
Known examples of Participation
Evidence available from different parts of the world (mainly anecdotal) has demonstrated improved leprosy programme performance when persons affected by leprosy have contributed to leprosy control activities. People affected by leprosy are currently engaged in different roles with varying levels of participation and responsibility.
· The majority of persons affected by leprosy are passive recipients of services; they are expected to bring nothing to the interaction with health workers other than the disease; they are expected only to comply with treatment demands and are not infrequently blamed for treatment failure.
· There are a few situations where people affected by leprosy are given responsibility for some services in their communities. As suppliers of services they do contribute to local reductions of disease burden.
· There are reports of some persons affected by leprosy who independently assume roles through which they initiate social actions. Such individuals are known to fight for the health or treatment rights and to facilitate access to social entitlements in support of their peers.
· Some persons affected by leprosy are participating in the Governance of leprosy programmes. Their advice is sought regarding programme gaps; they are monitoring the implementation of services and they are assisting in programme surveillance.
· There are numerous examples of persons affected by leprosy uniting to form groups which develop as networks and community based organisations; as such they are pursuing objectives of improved health coverage, disability care and development.
The list is not comprehensive; the point of it is to initiate an interest in the potential that exists. All examples of participation, including those which have not been successful should be studied to gain an understanding of the relevance, utility and effectiveness of the participation of persons affected by leprosy in strengthening of leprosy services.
Congruency with Major International Initiatives
· The Alma-Ata declaration promotes community and individual participation in the planning, organization, operation and control of primary health care[v].
· The WHO developed Guidelines for strengthening the participation of persons affected by leprosy. Those guidelines aim to promote greater participation of persons affected by leprosy generally[vi].
· Principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members were formulated during the UN General Assembly, 5th Session in August 2010. That publication stresses the right of people affected by leprosy to be “actively involved in decision making processes regarding policies and programmes that directly concern their lives”. [vii]
· The WHO and The Nippon Foundation jointly organised an International Leprosy Summit aimed at developing a strategy to overcome the remaining challenges. Those organisations published the ‘Bangkok Declaration Towards a World Without Leprosy’ which urges governments to involve communities and to promote the empowerment of persons affected by leprosy.
· Building on the momentum generated by the Bangkok Declaration, the WHO Global Leprosy Strategy 2016-2020, “Accelerating towards a leprosy-free world” features principles of action initiation to ensure accountability to and to promote inclusion of people affected by leprosy.
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Discussion
If we are to achieve the vision of a “leprosy free world” it is essential that the planning of leprosy control programmes must extend beyond conventional models of health service delivery. It is likely to prove essential to encourage and embrace participatory community approaches and the mobilisation of people affected by leprosy. People affected by leprosy are a significantly underutilised cadre of experts. To have discounted their potential in the past may be explained as oversight; to ignore their potential in the future will be folly.
There are known examples of the participation of persons affected by leprosy. Such examples have demonstrated how participation has added value to programme efforts and how it has reduced costs of implementation. The inclusion of people affected by leprosy as contributors in leprosy control, however, is perhaps significantly hindered by the fear of status loss by health workers. Another hindrance is the prevailing mind-set of programme managers and policy makers. It will require a major paradigm shift if people affected by leprosy are to be given meaningful roles in leprosy control activities. Evidence that a shift is beginning to take effect will be when programme managers and policy makers are truly persuaded that people affected by leprosy can actually be effective. This will reduce the potential for tokenism and it’s negative effects; it will also be a significant step towards a reduction of stigma. These effects alone will be liberating for all concerned with reducing the burden of leprosy.
The last mile in leprosy elimination need not be as difficult as it is currently perceived to be. It will be made easier by the recognition, inclusion and valued participation of people affected by leprosy . We will require resources: a tool-kit to assist all stakeholders to progress toward the inclusion of people affected by leprosy; a scale to measure levels of participation from a state of non-inclusion to complete involvement . These and other tools are currently in the process of being developed.
Conclusions
There is a conviction that the participation of persons affected by leprosy will make leprosy programmes more resourceful; it will add passion to work and it will take leprosy programmes closer to the communities. Participation will address the burden of leprosy more fully. It will address public health concerns, but will also have effects far beyond those limits. It is accepted that in the current situation there is a requirement for scientifically correct and operationally feasible participatory approaches for the involving persons affected by leprosy, but these are not a hurdle; they are an opportunity
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[i] Leprosy: urgent need to end stigma and isolation
[ii] Weekly Epidemiological Record; Global leprosy: need for early case detection; No. 36, 2015, 90, 461-476,
http://www.who.int/wer.
[iii] Declaration of Alma-Ata, International conference on primary health care, Alma-Ata, USSR, 6-12 September 1978 http://www.who.int/publications/almaata_declaration_en.pdf
[iv] The Comprehensive Rural Health Project, Jamkhed (CRHP) “Jamkhed Model”; reference sought on 16/10/2013 at www.jamkhed.org
[v] Declaration of Alma-Ata, International conference on primary health care, Alma-Ata, USSR, 6-12 September 1978 http://www.who.int/publications/almaata_declaration_en.pdf
[vi] Guidelines for strengthening participation of persons affected by leprosy in leprosy services, WHO Regional Office for South-East Asia; SEA-GLP-2011.2
[vii] UN General Assembly, 5th Session 2 – 6 August 2010 A/HRC/15/30 ps.2 – 7