The Goodwill Ambassador travels to two of the three countries with the biggest burden of leprosy for an update on the progress they are making against the disease.
|Self-care activities in West Sumatra|
Late last year I visited Indonesia, which reports the third highest number of annual new cases of leprosy after India and Brazil. Since eliminating leprosy as a public health problem in 2000, the country sees between 16,000 and 19,000 new cases a year.
Of its 34 provinces, 12 have yet to achieve elimination. This is partly explained by the sprawling archipelago’s complicated geography and the decentralized nature of its administration—the latter requiring the central government to gain the understanding of each governor for its policies. It is up to each province how much of its budget it allocates for anti-leprosy measures.
After a briefing at the WHO country office in Jakarta, I flew to Padang city in West Sumatra province, where I took part in a leprosy awareness meeting. I was particularly interested to hear of an initiative of the state health department to educate bike taxi drivers about leprosy and involve them in awareness-raising activities. I also learned of initiatives to spread awareness involving mosques and women’s associations, and the work of an organization of people affected by leprosy promoting early case detection and offering patients advice on coping with the psychological issues they may experience following their diagnosis.
After the meeting, I departed for Padang Pariaman Regency. About 100 people affected by leprosy and health staff were waiting for me at the Enam Lingkung health center. During my visit, I had the chance to watch people participate in self-care activities. One man I met, who had been left with poor eyesight and severely deformed fingers as a result of leprosy, told me of his delight at undergoing surgery and seeing a marked improvement in both conditions. Support for his surgery had come from Baznas, the National Alms Agency, which provides assistance to the country’s needy.
Returning to Jakarta, I attended a WHO strategy meeting about a five-year plan to detect and eliminate leprosy and yaws in every state of Indonesia by 2020. I said I was prepared to visit Indonesia as often as necessary if I could be of assistance in this effort.
|Dr. Nila Moeloek, Indonesia’s Minister of Heath|
In a meeting with Health Minister Dr. Nila Moeloek, I learned that the ministry was adopting both a community-based approach and a family-based one in the 12 provinces that had yet to eliminate leprosy. I said I hoped that the ministry would involve PerMaTa, the country’s main organization of people affected by leprosy, in these activities. I also repeated my offer to visit Indonesia any number of times in support of its goals. Hearing this, the minister promised to accompany me on a visit to a leprosy-endemic area next time.
While in Jakarta, I called on the offices of Muhammadiyah, a major Islamic NGO that operates the nation’s largest private school network. It has over 1,000 schools, ranging from kindergarten through university, and reaches 30 million people. I requested that Muhammadiyah spread awareness of leprosy among its network, and Dr. Sudibyo Markus, senior vice president for international relations, said he would be delighted to oblige.
|PerMaTa training session in Central Java|
Subang Regency has one of the heavier caseloads of leprosy in West Java province. During my stay in Indonesia I paid a visit to see the situation for myself. The health director told me that their efforts to tackle the disease were hampered by insufficient staff and funds. I was able to meet with a number of people affected, including a youth called Yudi. He told me that after he contracted leprosy, he had lost confidence and became afraid to talk to people. Now he was coming out of his shell and was using his experience to support others affected by the disease.
|Addressing residents of Ganga Kusta Colony in Raipur
|Mitanin: these female community health volunteers perform a vital role|
On my last day I flew to Solo (Surakarta) in Central Java, where PerMaTa had organized a training session. Leaders of 27 branches from three states had assembled to exchange information and ideas on awareness-raising, economic self-reliance and education. PerMaTa has 3,000 members throughout the country and with many young leaders emerging, it is actively engaged in its work.
I am committed to seeing Indonesia make further strides against leprosy. Consequently, I am planning to make a number of visits in 2017 to follow its progress and encourage all involved in their efforts .
Chhattisgarh is one of India’s high-burden states for leprosy, but it is making concerted efforts to tackle the disease, as I found on a recent visit following the successful launch of Global Appeal 2017 in New Delhi.
Located in central India, Chhattisgarh was formed in 2000 from part of Madhya Pradesh. In my meeting with Health & Family Welfare Minister Ajay Chandrakar, he told me that Chhattisgarh does not have a good track record historically speaking regarding leprosy, but that this was changing and leprosy was being made a priority.
As I learned during my stay, this has involved a change in strategy, seen in the shift from a top-down, government-led approach to a community participation model, with the involvement of gram panchayats, or local self-governing bodies in villages.
The health authorities are running skin camps, which they discuss in advance with the gram panchayat. By not calling them “leprosy camps” they are able to attract and screen more people.
They have also identified one or more “leprosy champions” in every village. These are people who previously had leprosy and were treated and cured, who are prepared to stand before the community and talk about their experiences. These “champions” encourage people to see a doctor if they suspect a problem; their stories also convince people that leprosy is curable.
Another key player is the mitanin. These are female community health volunteers chosen by their communities. The word is Chhattisgarhi for “a female friend” and they are exactly that—female friends to their communities who improve awareness of health issues and provide relief for common health problems. The mitanin system has been replicated in other states, where these health workers are known as ASHA, or Accredited Social Health Activists.
The results of these initiatives are beginning to be seen in increased case numbers. From reporting around 8,000 cases per annum for the reporting years 2013-2014, 2014-2015, and 2015-16, Chhattisgarh had recorded over 10,500 new cases between April and December 2016, and was expecting a figure of around 12,000 by the end of March. This is a good sign as it means hidden cases are being uncovered. The current year is the first that Chhattisgarh has seen more PB cases than MB cases.
In addition to Health Minister Chandrakar, I also had meetings with Sonmoni Borah, secretary of the social welfare department, and Social Welfare Minister Ramshila Sahu and other partners in the fight against leprosy, including India’s national program manager, Dr. Anil Kumar (see next page).
|APAL state leader for Chhattisgarh Ghasiram Bhoi introduces the Goodwill Ambassador to his mother.|
Among the points we discussed were the idea of forming a coordination committee that would cut across departments and agencies and make it easier for various issues relating to leprosy to be discussed under the same roof. I am pleased to say that the health department has put itself forward to be the “nodal department” for leprosy.
We also discussed skills training and a maintenance allowance for people affected by leprosy, one that takes account of the social disability they shoulder as a result of the stigma attached to the disease.
During my stay I traveled from the capital Raipur to the district of Masahamund where I had a chance to meet with some mitanin and talk to a number of people under treatment.
|Ghasiram Bhoi speaks at a gathering of residents of Indra Dharam Dham Kusta Colony in Raipur.|
Among those accompanying me during my stay in Chhattisgarh were the leaders of the Association of People Affected by Leprosy (APAL), Vagavathali Narsappa and Guntreddy Venugopal, and APAL’s state leaders Ghashiram Bhoi and Vijay Masih.
Mr. Bhoi’s colony is located in Raipur. Of its 150 residents, 80 are people affected by leprosy—and all 80 beg for a living. However, a resident I spoke with there said he did not want his son to do the same and I believe this holds true of all parents. With ramped up efforts to control the disease, provisions to provide skills training and allowances to overcome social disability, I am confident that one day such a situation will be a thing of the past.