The Goodwill Ambassador travels to the state of Odisha for meetings with top officials, and to Geneva for a summit on Neglected Tropical Diseases.
|Chief Minister Naveen Patnaik|
At the request of India’s Association of People Affected by Leprosy (APAL), I visited the state of Odisha in March. During my stay I met with the governor, chief minister, health minister and other senior officials to discuss the situation of people affected by leprosy in the state.
Over 10,000 new cases of leprosy were discovered in Odisha last year, or some 8% of the national total. The prevalence rate of the disease was 1.35 cases per 10,000 population, well above the national rate of 0.65. Like its neighbor Chhattisgarh, which I visited the previous month, Odisha one of the few states in India yet to reach the elimination milestone of less than 1 case per 10,000 people.*
|APAL's Umesh Nayak presents Health Minister Dr. Pradip Kumar Amat with a petition.|
On arrival in the state capital Bhubaneswar, I was met by APAL state leader for Odisha Umesh Nayak and his colleagues. From the airport we headed directly to the office of the Human Rights Commission for a meeting with the acting chairperson Justice B.K. Misra. APAL presented him with a list of 23 cases where improvements in living conditions are needed. It was clear that the Justice Misra took a real interest in the subject: he had even invited 15 students from the National Law University Odisha to sit in on our meeting and learn about the problems people affected by leprosy face.
At Odisha’s Department of Health & Family Welfare, I was told that a leprosy case detection campaign (LCDC) carried out in the state between September and October last year uncovered 4,498 new cases. Accredited Social Health Activists (ASHA) and other volunteers went from house to house looking for persons with symptoms of leprosy, and clearly they had some success. Health Secretary Dr. Pramod Kumar Meherda told me that Odisha is not only looking for new cases but also putting efforts into reconstructive surgery and rehabilitation in order to promote social reintegration.
Dhenkanal district is a three-hour journey by car from the state capital. At Beltikiri community health center, I met with some of the state’s ASHA health volunteers who do such important work. I also met a number of patients who had been diagnosed with leprosy thanks to their efforts. Among them was an 11-year-old boy who will not develop disability because of his early diagnosis and timely treatment.
On the outskirts of the state capital is Rama Krishna Pally leprosy colony. Of the 300 or so residents, 90 carry disability cards. The occupation of most of the card holders was listed as “beggar.” The residents of the colony have no land rights and expect to be forced out at any time. Furthermore, what assistance they receive from the government is currently not enough to support a family’s basic needs.
In my meetings with Governor Dr. S. C. Jamir, Chief Minister Naveen Patnaik and other top officials I said that people in the colonies were making efforts to stand up for themselves, but that severely disabled and elderly residents who had no way to make a living other than by begging required more assistance.
|Addressing residents of Rama Krishna Pally leprosy colony|
APAL’s leaders presented their requests in detail. These covered areas such as enhancement of maintenance allowance, land allocation rights, provision of medical services, and welfare and rehabilitation schemes. Umesh Nayak, who said he had been up all night preparing the materials, breathed a sigh of relief when the meetings were over. “I feel like I have just finished an exam,” he told me.
I returned to Japan via New Delhi, where I had meetings at the WHO country office and with senior health ministry officials. The central government has increased the budget for leprosy eradication, which will enable more LCDCs to take place over the next three years. It is a clear sign of India’s determination to reach as many new cases as possible. I applaud its efforts and will continue to offer my support in whatever ways I can.
At the Global Partners Meeting on NTDs on April 19, I was honored to receive the WHO’s “Health for All” Gold Medal from outgoing WHO Director-General Dr. Margaret Chan for my services to leprosy elimination activities as Goodwill Ambassador. Needless to say, a great many people and organizations are involved in this work, and I accepted the award on behalf of them all.
|Kofi Nyarko thanks Dr. Chan
|the Goodwill Ambassador with Dr. Chan upon receiving the “Health for All” Gold Medal|
What gave me greater pleasure still was the warm gesture of appreciation offered to Dr. Chan by one of the conference organizers, Uniting to Combat NTDs, who had asked Kofi Nyarko of Ghana to convey the thanks of all those affected by NTDs to the director-general.
Kofi, who is the president of IDEA Ghana, is a person affected by leprosy whom I have known for many years. He told the summit how he had been diagnosed with leprosy at the age of 7 but had gone on to become a school teacher, start a family and is now helping people affected by the disease to return to their homes and families.
He thanked Dr. Chan for advancing the fight against NTDs and for shining a light on the people they affect. He then presented her with a beautiful silk scarf patterned on all the vectors and pathogens responsible for causing these diseases.
It is very important for us to look beyond the disease to see the person; that day, Kofi stood for every person affected by NTDs.
As I have said to people affected by leprosy over the years, “You are the experts,” “You are the main actors.” Therefore, together with people affected by leprosy, I intend to keep playing my own supporting role in working for a world without leprosy and its associated stigma and discrimination. It is the very least I can do, in consideration of the honor bestowed upon me.