WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: On the Road in India

The Goodwill Ambassador visits Chhattisgarh and Andhra Pradesh, and attends a global leprosy program managers' meeting in New Delhi.

Self-help group members with TLMI facilitator at Bramba Vihar colony.

Chhattisgarh (September 22-24)

Chhattisgarh is one of India's newest states and primarily rural in character. Along with Bihar, it is one of the two remaining states where the prevalence rate of leprosy remains above the threshold of 1 case per 10,000 people. Its task is to "reach the unreached."

A four-hour drive from Raipur airport brought me to the town of Bilaspur. My destination was Bramba Vihar Leprosy Colony. Formed in 1979, it is home to 46 residents. Heavy rains had left parts of the colony waterlogged. Appeals to the authorities for infrastructure improvements - including better drainage - have so far fallen on deaf ears.

Three self-help groups operate in the colony. Facilitators from The Leprosy Mission India (TLMI) are teaching savings and book-keeping and have helped the groups to open bank accounts. They generate income from buying and selling wood.

Although living conditions were not the best, I had the impression the colony is well organized under its leader, Mr. Chitra Singh. I urged him to work closely with Mr. Ghasiram Bhoi, the president of the State Leprosy Rehabilitation Committee of Chhattisgarh, an organization of people affected by leprosy. That way, I said, the voices of the state's scattered colonies would be heard.

Artisan Harilal Kumhar with wife Sarojani and daughter Chandani. He successfully underwent reconstructive surgery and now runs his own business.

To coincide with my visit to Bilaspur, Chhattisgarh's state leprosy officer had organized a meeting of district leprosy officers. In his presentation, Dr. D. Bhatpahare explained that the leprosy prevalence rate had fallen from 11 cases per 10,000 people in 2001 to 1.46 in 2006; since then it has remained above the 2.0 mark. "We are progressing slowly, but well," said Dr. Bhatpahare. The state still faces difficulties - including hard-to-reach districts, a lack of personnel, and the low priority of the leprosy program - but Dr. Bhatpahare was clearly intent on overcoming them.

Earlier in the day, at his suggestion, I had called at a shop in Bilaspur to meet a man who had undergone reconstructive hand surgery. With the 5,000 rupees he received from the government for undergoing the procedure, he started a business making and selling earthenware pots. Seeing Mr. Kumhar's confident demeanor and the family he was supporting underscored for me the importance of this aspect of leprosy services.

Recent heavy rains had left parts of the colony waterlogged.

My final appointment in Bilaspur was with the state health minister, Shri Amar Agrawal. It was his birthday and well-wishers thronged his residence. He told me he wanted to make the state a model for leprosy policy. Mr. Bhoi told him about conditions at the colonies and the minister agreed to keep in touch on the issues.

The next day I visited Ashadeep Leprosy Colony in Bhilai, about an hour's drive from Raipur. As I relate elsewhere on these pages, it was one of the most impressive colonies I can recall visiting. This was in contrast to Santvinoda Leprosy Colony in Rajim, which I visited 24 hours later. Located near a famous temple, its principal source of income is begging. I did not witness the spirit of endeavor I saw in Ashadeep.

While in Chhattisgarh I also met representatives of the Human Rights Commission and took part in an NGO workshop. The latter was hosted jointly by TLMI and the State Leprosy Rehabilitation Committee. Mr. Bhoi showed why he is a leader, saying: "At the same time that we continue our appeals to the government, we can't rely on assistance alone. We need to make our way in life by dint of our own efforts." This is the right attitude and, with the right opportunities, it can be done.

ANDHRA PRADESH (September 25-27)

Whereas Chhattisgarh is still grappling with leprosy as a public health problem, Andhra Pradesh has been far more successful in controlling the disease. On the other hand, it has more leprosy colonies than any other state and people affected by the disease still contend with many issues.

Mr. Madhu Goud Yaskhi, MP, greets residents at Devanagar Leprosy Colony.

Following a media briefing at Hyderabad Press Club, I set out on a three-hour drive to Devanagar Leprosy Colony in Nizamabad. I had feared that demonstrations in support of independence for the Telengana region of Andhra Pradesh would lead my journey to be cancelled. But my acquaintance and friend Mr. Madhu Goud Yaskhi, Member of Parliament for Nizamabad, who had requested that I visit this colony in his constituency, assured me all would be well.

Arriving at Devanagar colony, I found a crowd of some 200 people waiting. There was a heavy police presence and a large number of journalists. Mr. Yaskhi arrived soon afterward, and together we made our way to meet some of the residents.

The colony has a population of 815, including 460 persons affected by leprosy. Some work in agriculture, some run their own businesses and a portion make a living from begging. The Sasakawa-India Leprosy Foundation has recently decided to provide microfinancing for a beauty salon, digital photo shop, laundry and general store, as well as for a buffalo-rearing enterprise.

I first met Mr. Yaskhi in 2006. A lawyer by profession, he lived in the United States for 14 years before returning to India to enter politics. He credits me with opening his eyes to leprosy after learning about my work. At a breakfast he hosted the next morning at his home in Hyderabad, he said he had come to know the Devanagar colony while commuting between Nizamabad and Hyderabad. Every year, he celebrates his birthday at the colony.

An interaction with youth from Hyderabad colonies

In the afternoon, we took part in a seminar on laws that discriminate against persons with leprosy. Mr. Yaskhi said he would create a bipartisan committee on leprosy and take up the issue with the Supreme Court. "What we need are not laws but a warm heart," he declared.

While in Hyderabad, my schedule included meetings with Andhra Pradesh Governor E.S.L. Narasimhan, the CEO of the Society for the Elimination of Rural Poverty, Mr. B. Rajsekhar, and Minister for Social Welfare Shri Pithani Satyanarayana. On each occasion, I was accompanied by Mr. V. Narsappa, the determined and hardworking president of the Society of Leprosy Affected Persons.

Mr. Narsappa had arranged for me to meet around 50 representatives from a dozen or so colonies. After listening to the different problems they raised, I urged them to get behind Mr. Narsappa. "If all Andhra Pradesh's 101 colonies form a cohesive unit, you will become a powerful force," I told them. "You will be heard."

Separately, I also met with some 20 educated youngsters from nearby colonies at a gathering hosted by LEPRA India. These youth can help change society. I believe they will play their part.

New Delhi (Sep 28-29)

With Justice Minister Salman Khurshid in New Delhi

From Hyderabad I moved on to New Delhi, where I had been invited to give a keynote address at the WHO's Global Leprosy Program Managers' Meeting. I commended program managers on their achievements to date, but urged them not to grow complacent. Many challenges remain and it is important that we all work together closely. I also hoped they would act on the WHO guidelines for greater participation of persons affected by leprosy in leprosy services.

My appointments in Delhi included a meeting with Minister of Law and Justice Shri Salman Khurshid, at which I raised the issue of discriminatory laws. I also visited a leprosy colony, Anand Gram, in east Delhi, where leaders from 15 colonies in the surrounding Tahirpur district had gathered to describe the difficulties their communities face. Their problems, like those of their counterparts in Chhattisgarh and Andhra Pradesh, have solutions. But they will take time to achieve, and more efforts are needed.