Monitoring Progress in Southeast Asia
A journey to Malaysia and Indonesia to see how they are faring post-elimination, followed by a trip to India to visit colonies and attend a historic conference.
MALAYSIA, INDONESIA (NOVEMBER 28-DECEMBER 5)
Vice President Jusuf Kalla
Health Minister Siti Fadillah Supari
In many countries that have achieved the WHO's target for eliminating leprosy as a public health problem, it is perhaps inevitable that leprosy is slipping down the list of government and health ministry priorities. Yet sustainability requires continued political commitment, otherwise there is a real risk of undoing the good work that has been achieved to date.
Toward the end of last year I visited Malaysia and Indonesia ― two countries that achieved elimination at the national level some years ago ― to observe the current state of leprosy countermeasures and urge those concerned to continue fighting the disease.
In Malaysia, I visited the province of Sabah, which has a population of 2.86 million, or 11% of Malaysia's total. Nationwide, the leprosy prevalence rate is around 0.3 per 10,000, but in Sabah it is rather higher at 0.44, and there are several areas within the province where much more work needs to be done.
Sabah also has a large floating population of migrant workers from neighboring Indonesia and the Philippines, and in fact some 60% of the leprosy cases in the province are foreigners.
Local health officials I spoke with stressed the importance of early detection and treatment, but said it was even more important to educate the general public about leprosy.I understand there are plans to conduct IEC activities and home visits, and there is talk of giving healthcare workers periodic training about leprosy.
Further, Sabah also has various programs for the distribution and management of MDT supplies, the monitoring of treatment and follow-up, and prevention of subsequent complications. Pursuing these strategies, regions such as Sabah, which have achieved elimination, will be able to sustain the achievement and further decrease the number of patients.
Indonesia achieved elimination in 2000. Since MDT was introduced in the 1980s, some 300,000 people have been cured of leprosy. The current prevalence rate is just under 1 per 10,000. But with a population exceeding 200 million, every year some 20,000 new patients are registered. This means that after India and Brazil, Indonesia has the third-highest number of patients in the world.
However, in Indonesia, the priority diseases are malaria, TB, dengue fever and more recently avian flu. On arrival in Jakarta, I first paid a call on Health Minister Siti Fadillah Supari and Vice President Jusuf Kalla, outlining the world situation of leprosy and seeking from them an ongoing commitment to tackling the disease.
Some 30% of Indonesia's leprosy cases are to be found in East Java, where I visited Surabaya and Sulawesi. Located approximately in the middle of the Indonesian archipelago, Sulawesi was once home to a large number of leprosy patients,
In Surabaya, I visited the 93 families living in Babat Jerawat leprosy settlement. The people I met seemed in good heart, and the children ran about wearing big smiles. There might be discrimination outside the settlement, but within it there was a positive spirit and a sense of community. Yet I can't help thinking that had there been an effective IEC strategy in place, there would have been no need for a separate village of persons affected by leprosy at all.
Children at the Babat Jewarat colony in Surubaya
This contrasted with the situation on Bunaken, a beautiful coral island about 45 minutes by boat from Manado in North Sulawesi, where I was encouraged to find persons affected by leprosy living in the community. In a population of some 1,500,11 people are being treated for leprosy, and 12 have been cured. There is no discrimination shown them, and they live and work alongside everyone else. It's an example that I hope will be emulated in other parts of the country
In Makassar, Sulawesi, I visited two institutions that seemed to symbolize different phases of the fight against leprosy. The Daya Leprosy Hospital has 220 beds but almost three-quarters of them are empty. Now that MDT is readily available, I feel there is no longer a need for a specialist hospital such as this today.
The National Leprosy Training Center, by contrast, has an important role to play in improving the quality of services. To date, some 3,000 leprosy officers, 1,500 doctors and 1,000 medical students have received training here. By nurturing human resources and acting as a national knowledge base on leprosy, I'm sure it has a key role to play in sustaining Indonesia's fight against the disease.
Bunaken Island, North Sulawesi (left); Bharat Mata Kusht Ashram, Haryana State
(middle, right), where an old dwelling reminds of times past
INDIA (DECEMBER 14-19)
According to 2004 statistics published by the WHO, 64% of the world's leprosy patients are to be found in India. While the actual number of cases has come down dramatically, those affected by the disease still face severe social discrimination, and might be considered a “leprosy caste.” For at least some of these people, shunned by family and friends, their home becomes a self-settled colony.
At the start of 2005 I proposed that a survey be carried out of all such colonies, and that a conference of colony leaders be held. By the time this conference took place in December, the results indicated there were 630 colonies across the 23 states and union provinces surveyed so far. While many residents survive by begging, some are engaged in enterprises such as weaving, carpentry and small-scale manufacturing as a means to make a living.
I visited several such colonies, in the Delhi area and in the state of Rajasthan, during my seventh and final visit of 2005 to India last December.
I went first to Satya Jeevan leprosy colony located at Lajput Nagar in Delhi. Once it consisted of tents pitched along the side of the road, but now the colony residents live in brick buildings. Eighty households made up of 230 people live here. While the majority of them survive on begging, in recent times the number of people making a living by selling water to passers-by or working as rickshaw drivers has been increasing.
It was here I met a 14-year-old girl, both of whose parents once had leprosy. Previously she had attended school in the area, but when it came out that her parents had had leprosy, she was bullied by her classmates and eventually had to leave. She hasn't been to school for more than a year, but fervently wishes to return to her studies. There were other children in a similar situation, and I promised to assist in building a school at the colony.
Next I visited another colony, Bharat Mata Kusht Ashram, in Haryana state. Established in 1973, it is home to some 300 people today.What is special about this colony is that the residents have formed a cooperative association and have built the economic foundations of a community that doesn't rest on begging.
Over 120 residents are engaged in weaving and other occupations, and donate a portion of the profits to the cooperative. This money is used to purchase feed for the chickens and cows the colony keeps; to pay for doctors to come and visit; and to help support those with severe disabilities.
The following day I flew to Jaipur in Rajasthan. Jaipur is the founding place of the NGO known as Sarthak Manav Kushthashram(SMK), an organization set up by well-to-do ladies some 30 years ago to help persons affected by leprosy achieve self-reliance.
The colony that is the focal point of their activities is located near a Hindu temple and is home to 30 families totaling 80 persons who once had leprosy, and their children. Many colonies in India are located close to temples, and residents look to receive alms from worshippers, although they are not allowed into the temple themselves.
At this particular colony, the residents make a living from weaving and making hand-printed cloths. They also manufacture order-made shoes free of charge for people cured of diseases coming from many parts of the state.
The colony has established good connections with a European NGO, which directly purchases large quantities of the woven products it makes. As with Bharat Mata Kusht Ashram, a portion of the sales price goes toward food, electricity, medicine and other necessities for the community, and supports those who are unable to work. What is left over counts as each individual's income, and I heard that some of them are remitting money to help far-off family members.
The next day, I drove three hours south of Jaipur to Ajmer, a popular pilgrimage center for both Hindus and Muslims. Halfway along the pilgrimage route is a deprived area with a history of more than 100 years. Here some 3,000 people live, of whom approximately 2% have leprosy or once had the disease.
Many people move here in order to solicit alms from pilgrims. In contrast to the two colonies I visited earlier on this trip, here most of the residents survive by begging. Although there have been a number of projects designed to help them become economically independent, these have mostly ended in failure because the idea of living on handouts is firmly entrenched.
On the other hand, the colony is progressive in the sense that persons affected by leprosy live alongside other members, their children go to local schools and there is no discrimination in marriage.
Any success will ultimately depend on the outlook of persons affected themselves.
Although the prevalence rate of Rajasthan is 0.31 per 10,000 population, the problem of discrimination remains, and further efforts will be needed to sustain what has been achieved. Ensuring that correct information about leprosy is properly disseminated is an important part of these efforts.
Further, while there are colony residents that are becoming economically self-reliant, there are others for whom begging remains the routine form of survival. And even those who are successful are often successful only within the confines of a colony.
To change the situation, I will continue to work with governments, the WHO, NGOs, the media, and business organizations to inform, educate and communicate with people about leprosy.
But any success ultimately will depend on the efforts and outlook of persons affected by leprosy themselves. Hence the most important event of this visit was the first-ever national conference of persons affected by leprosy, held in Delhi on December 19, and reported in more detail elsewhere on these pages. The conference was a great success, and issued the Delhi Declaration of Dignity, which will serve as a blueprint for the way ahead for a society without discrimination against persons affected by leprosy. I intend to give this movement my full support.
Residents of a Delhi colony gather for a meeting.
● Treatment completion rate (cure rate)
Ensuring that all new patients who start multidrug therapy complete the full course of treatment within a reasonable period of time is an important component of leprosy control. Treatment completion means that a patient with paucibacilliary leprosy completes 6 monthly doses within a 9-month period, and a patient with multibacilliary leprosy completes 12 doses within 18 months. Treatment completion rate can be used in the field as a proxy for cure rate, which require an additional examination.