Program managers' meeting focuses on stigma, disability and other challenges.
|Participants at the recent program managers' meeting in New Delhi|
At the recent meeting of global leprosy program managers held at the WHO's Southeast Asian Regional Office on September 28-29, one country report stood out. Morocco's Dr. Abdellatif Idrissi Azzouzi chose to title his presentation "Fatima or the Hard Reality of Leprosy". He showed a photograph of a severely disfigured woman and later explained that she was one of three new cases with Grade II disability that Morocco registered in the first half of this year.
It was a reminder that even as the number of new cases continues to fall globally, leprosy still takes its toll on the individuals affected. Fatima's example also drew attention to one of the goals of the Enhanced Global Strategy* that the program managers had come to discuss: reducing the occurrence of Grade II impairments and disabilities in new cases.
Welcoming the nearly 100 program managers, technical experts and partners to the meeting, Dr. Samlee Plianbangchang, the WHO's regional director, acknowledged the progress made by the global leprosy program in recent years, but said that "as the disease burden declines, we can expect more challenges." Among these are the need to improve case-finding activities and also to intensify efforts to overcome the stigma and discrimination that people affected by leprosy face.
In a sign of the increasing importance the WHO attaches to addressing the social aspects of the disease, the first session was devoted to "Reducing Stigma and Discrimination."
Said Dr. Wim van Brakel (NLR Technical Advisor): "One reason why it has been so hard to do something about stigma is that it has been poorly understood until now. We've had a much too simplistic picture of what stigma and discrimination are." He outlined a comprehensive stigma reduction model and drew attention to new stigma guidelines published recently by the International Federation of Anti-Leprosy Associations (see sidebar). "The consensus is that we can't just use one particular strategy."
Underlining the need for a holistic approach to treating leprosy and its consequences, an approach that extends beyond medical care, was Dr. P.K. Gopal (National Forum). "The cure remains incomplete until persons affected by leprosy regain the social and economic status that allows a dignified life," he said.
On the subject of reducing Grade II disability in new cases, Professor W.C.S. Smith (University of Aberdeen) listed three approaches: preventing leprosy, early diagnosis and treatment, and prevention-of-disability activities. Should a new case with Grade II disability appear, he urged program managers to find out the reason why the patient was diagnosed too late. "Trace your way back through the patient journey," he said. "Use this as an opportunity to investigate and develop solutions."
Many of the presentations by the national program managers pointed to a lack of political commitment as one of the challenges they faced. But the meeting also raised the issue of keeping program managers and health workers motivated as leprosy becomes less of a problem. Said Dr. V. Pannikar, former team leader of the Global Leprosy Program, "The graphs are getting flat. It is a challenge to keep enthusiasm up. But if we don't do what we are supposed to do, leprosy will come back. We have to make small, small interventions; cumulatively, they add up."
One of these small interventions is examining contacts, including household contacts, of a person diagnosed with leprosy. This was described as a cost-effective way of detecting new cases in individuals with increased risk of developing the disease, and was one of the recommendations to come out of the meeting. Discussion also focused on chemoprophylaxis and the operational conditions under which it might be used successfully.
While commending the goal to reduce disability in new cases, several participants expressed concern over whether enough was being done for persons who are already disabled. Furthermore, "does the idea of rehabilitation extend to social and economic rehabilitation?" asked Menberu Adane (Ethiopian National Association of Persons Affected by Leprosy), one of several affected persons' representatives invited to attend.
Goodwill Ambassador Yohei Sasakawa delivered the keynote address and the meeting was ably chaired by Dr. Joseph Kawuma (German Leprosy and TB Relief Association). Among Dr. Kawuma's exhortations to program managers was to remind them of their responsibility to ensure there was a correct interpretation of the trends being seen in leprosy: "We mustn't tell the world that there is a diminishing number of cases when there is diminishing case-finding," he said.
Asked for a program manager's perspective on the proceedings, Dr. Salah Mohamed Abdel Nabi of Egypt, speaking on the sidelines, said: "It is very useful to meet colleagues from all over the world and hear new things. I think it is the same for all of us."
* Enhanced Global Strategy for Further Reducing the Disease Burden Due to Leprosy (2011-15).