Renewed efforts in Sri Lanka’s battle against leprosy
Hendala Leprosy Hospital harks back to a bygone era. It was the first leprosy hospital built in South Asia in 1708. Today, the original funeral carts used for the burial of leprosy patients stand outside the hospital, serving as a stark reminder of leprosy’s dark past and the forced separation of leprosy patients.
Remarkably, Hendala Hospital remains open over 300 years later, housing 31 recovered leprosy patients. Although the residents have no medical reason to stay at the hospital, their homes and families are long since gone and they have nowhere left to go. The hospital and health care staff provide their only refuge.
88 year old Edward Alwis is the longest serving resident at the hospital. “When I first came here in 1942 this hospital was full. There were 900 patients. I remember some patients were on the corridors because the wards were full. I was 14 years old and I was terrified. All I could think of was going back home,” Edward recounts the first day of the 75 years he would later spend at the hospital.
Conditions at the hospital dramatically improved over time. The introduction of a new drug treatment regimen in the 1980’s, meant that leprosy could be fully cured and new patients no longer required hospitalization. Instead people living with leprosy were treated at local health care facilities.
Leprosy can be cured with multidrug therapy (MDT). However, timely detection and early treatment is the best way to prevent disabilities and deformities due to the disease.
“We thought that leprosy was a disease of the past. However, around 2000 new leprosy cases are reported in Sri Lanka each year. Some of these patients are accessing health services too late, when they have already developed visible deformities," Dr Jayalath, Medical Officer in Charge (MOIC), Hendala Hospital.
Alarmingly, about 10% of the newly diagnosed leprosy cases are found in children, which suggests active disease transmission in the community.
The residents at Hendala Hospital feel it is crucial for people with leprosy symptoms to come forward and seek early treatment.
“There may be people out there who are hiding because of this ‘leprosy’ label. There is no need to hide. The treatment is very good nowadays, you can be fully cured. There are incorrect rumours and myths, which spread fear and make things worse,” says Dudley, a 71 year old resident at the hospital.
Sri Lanka eliminated leprosy as a public health problem in 1995, recording a prevalence of less than one case of leprosy per 10 000 people. However, the number of new leprosy cases being detected threatens to undermine Sri Lanka’s progress against the disease.
Health workers are also witnessing an increasing number of relapses among leprosy patients who have completed treatment, which points to the possibility of drug resistance. These factors warrant immediate intervention and a targeted approach to address the current challenges for leprosy control.
New strategic approach
WHO is supporting the Ministry of Health, Nutrition and Indigenous Medicine to investigate the increase in leprosy cases and ensure that the progress against leprosy is sustained. WHO is conducting an assessment on drug resistance in leprosy to investigate the reasons for relapses and proposing recommendations on how best to tackle this issue.
Sri Lanka is receiving US $ 65 000 from the Bangkok Declaration Special Fund, which will be channeled into the new National Leprosy Strategic Plan 2016 - 2020 in a final push to overcome the hurdles towards ending leprosy, with support provided by WHO.
Building the capacity of health workers on leprosy control through comprehensive training will be central to the new leprosy programme. This will enable the expansion of leprosy services to the peripheries and former conflict zones through satellite clinics.
“There is no room for complacency when it comes to leprosy. Today, there are children being diagnosed with leprosy, we cannot let this continue. It is unacceptable that most patients have visible deformities at the time of leprosy diagnosis. Ending leprosy is within our reach and we have the knowledge, technology and resources to ensure that it does not become a public health problem again,” highlighted Dr Jacob Kumaresan, WHO Representative to Sri Lanka.
While it is too late to reverse the stigma and pain experienced by Edward and the other residents in the leprosy hospital, new cases can be detected and treated early so that leprosy patients may have a bright future.
The residents at Hendala Hospital have built a community amongst themselves, some have married, while others play music for the hospital band. They are pleased that there will be no new patients at the hospital. They know that they are the last patients who will live out their lives in a leprosy hospital in Sri Lanka and eventually Hendala will close its doors for good.
WHO is working with the Ministry of Health to ensure that progress is not rolled back, and leprosy becomes history in Sri Lanka.