How to deal with leprosy and its consequences in a low-endemic context.
Thailand eliminated leprosy as a public health problem in 1994. We asked staff of the Raj Pracha Samasai Institute of the Ministry of Public Health’s Department of Disease Control to explain what the country is doing to sustain leprosy services 20 years on.
The integration of leprosy control into general health services started in 1973, and by 1976 the whole country was covered. After the introduction of multi-drug therapy in 1984, 100% coverage was achieved in terms of area and registered cases, by 1989 and 1994, respectively. Other factors included the commitment of health organizations in and outside the country, the improving socio-economic levels of the population and the fact that the leprosy control program in Thailand is under royal patronage.
|Atmosphere of trust: interviewer at work|
After Thailand achieved elimination at the national level, the leprosy program was strengthened. We conducted three Leprosy Elimination Campaigns (LECs) between 1996 and 2002 to accelerate case-finding in the community, which resulted in the detection of new cases. From 1998 to 1999, we carried out Leprosy Elimination Monitoring (LEM) based on WHO guidelines in 32 provinces and implemented a Special Action Project for the Elimination of Leprosy (SAPEL).* We also launched Leprosy Elimination Accreditation (LEA) to ensure the quality of leprosy services. As a result, we achieved elimination at the sub-national level in 2005.
Thailand still detects a few hundred new cases a year and has around 6,000 people with leprosy-related disability. We remain committed to sustaining the program, treating new cases promptly, providing rehabilitation services to people with disability, bringing down new case numbers and reducing the proportion of Grade 2 disability in new cases.
First, the proportion of new cases with Grade 2 disability at the time of diagnosis has not declined, suggesting the continuance of diagnostic delays. Second, we are finding new cases among foreign migrants and refugees, mainly from Myanmar. And third, not all people with disability due to leprosy are accessing rehabilitation services.
Under Thailand’s universal healthcare system we have developed a leprosy network of 20 general/community hospitals in the country’s four regions. We are building the capacity of the central and provincial leprosy coordinators and have developed screening guidelines for health officers at the peripheral level, as well as a referral system from peripheral health centers to specialized hospitals. In addition, we use LEA to assess the quality of case-finding, case-holding, disability prevention and rehabilitation.
They take part in leprosy-related research as interviewers and gatekeepers. We choose people who are educated and have good communication skills and train them how to interview. In our experience, interviews conducted by people affected by leprosy with others in the same situation can yield more in-depth information, because of the atmosphere of trust that develops. The role of the gatekeeper is to facilitate the process by leading the interviewee to a private spot, taking photos and preventing third parties from interrupting.
Another way they contribute is by forming Self-Help Groups (SHGs). These consist of people with leprosy-related and other disabilities, and result in better self-care practices and quality of life.
People affected by leprosy also participate in case detection, based on their own experience. They are very conscious of their children’s health and each year a number of new cases are brought to the attention of the health services by parents or grandparents who recognize the early symptoms.
The integration of leprosy villages into the general community is being carried out to improve their access to public services, promote the rights of residents and end the division between people affected by leprosy and the rest of society. It follows complaints that living conditions in the colonies lagged behind those in the wider community: roads, water and electricity were lacking; primary health care was limited in terms of the medicines and equipment available; and rights to housing and land could not be transferred to children.
So far, two of the 13 colonies have been integrated; a further eight are currently in the process. Integration only goes ahead when colony residents have been fully briefed on what will be involved and a majority of them are in favor.
For case-finding activities, it is cost-effective to have focused target areas. To identify these, we have three criteria: 1) districts in which new cases have been detected every year for the past five years; 2) districts in which new cases have been detected in children in any of the past five years; and 3) districts in which more than 10 new cases have been detected in any of the past five years.
Also, advocacy is important for keeping leprosy on the health agenda and building awareness. This includes everything from a speech by the deputy minister of public health on World Leprosy Day to establishing volunteer groups (see sidebar) and encouraging people affected by leprosy to participate in community events and interact with the general public and officials.
We have found that involving people affected by leprosy and showing what they can do promotes self-confidence and helps to change community attitudes toward the disease in a positive way.
Preserving the history of leprosy secures essential information on how the people affected, their relatives, communities, and related organizations have overcome the difficulties they faced. It provides precious lessons for the next generation — the good practices to follow and the mistakes to avoid.
* SAPEL is an initiative aimed at finding and treating cases in difficult-to-reach areas or situations, or belonging to neglected population groups.