WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

At home with one of Umbaki's 30 residents


From Turkey, I traveled via a conference in Georgia to Azerbaijan. This was my first visit to this energy-rich nation, which achieved its independence in 1991 with the breakup of the former Soviet Union.

My purpose was to go to the Umbaki leprosy sanatorium, located some 80 kilometers southwest of the capital, Baku. The sanatorium was relocated several times before it took over what had been a temporary camp for oil workers in the Gobistan desert next to Umbaki village in 1957. The camp's out-of-the-way location was doubtless deemed ideal for its purpose.

The route out of Baku follows the coastline of the Caspian Sea, along a good road that leads to the vast Sangachal terminal, one of the largest oil and gas terminals in the world and a symbol of Azerbaijan's mineral wealth.

Turning off at the sign for Umbaki, our party then headed inland along a deeply scarred road in desperate need of repair. It was only a further 25 kilometers to our destination, but took another one and a half hours. The barren landscape and tenuous link with the outside world served to underline the isolation of the sanatorium.

Eventually we reached our goal. Lying just beyond Umbaki village, the sanatorium came into view -- a cluster of ageing buildings surrounded by a low wall. In contrast to the stark nature of the surrounding landscape, trees dotted the compound, many of them heavy with pomegranates.

In the days of the Soviet Union, Umbaki was the only leprosy sanatorium in the southern Caucasus, treating cases from Georgia, Armenia and Azerbaijan. At its peak, in the 1960s and 1970s, there were roughly 200 patients. Today it is home to around 30 residents, among them a published poet, Mahmud Mahmudov.

We were taken on a tour of the sanatorium by its director, Dr. Vidadi Aliyev, who makes the punishing journey from Baku to Umbaki several times a week. He first took us to a dilapidated building to show us how residents used to live. Windows were broken or missing, there were holes in the walls and roof, and in general the structure was in a terrible state. "We shared it with frogs and snakes," said Mr. Gasym, one of the former occupants.

The intervention of a charity run by volunteers changed all that. Since 2003, Community Shield Azerbaijan has raised money to completely refurbish two residential blocks, transforming the lives of residents, who now live in draught-free rooms, enjoy hot showers, and heating provided by gas stoves. The charity has also donated several converted shipping containers to serve as a barber shop, laundry room, shower room, restroom and morgue.

As I toured the sanatorium, I was struck by how nicely residents had decorated their rooms, with many of them displaying photographs and other personal effects. I was told that Azeris like to welcome people into their homes, and certainly I shall not forget the warmth with which Umbaki's residents greeted me as I toured their accommodation -- nor the isolation in which they have been forced to spend their lives.

The prevalence of leprosy among pygmies is as high as 57/10,000.


I last visited the Democratic Republic of Congo in 2005, when registered prevalence of leprosy was 1.5 per 10,000 population. Since then, the rate has come down to 1.2, notwithstanding the many difficulties the health services face, especially in northern and eastern parts of the country as a result of war, continuing insecurity and lawlessness.

Among the DRC's peoples, the Pygmy population is said to have an especially high rate of leprosy. To learn more about this, I traveled to Oriental Province in the northeast of the country. My destination was Wamba, an administrative district of about 100,000 people of whom some 30,000 are Pygmies.

To reach Wamba, I flew from the provincial captial Kisangani in an 11-seat Cessna belonging to African Inland Mission, accompanied by the DRC health minister and the provincial health minister. Up until the last minute, it was not clear if we would be able to make the journey because of question marks over the state of the Wamba airstrip. Furthermore, the pilot was insistent that he could take no more than nine passengers, so one of our 10-strong party had to stay behind. As it turned out, we would be grateful for this later.

As we approached Wamba, we could see from the air a short, red runway cut into the forest, and large numbers of people waiting for us. Several days earlier, the local people had cut the grass and trees around the runway in preparation for our visit. But the runway itself was in bad shape, and upon landing the plane was badly jolted before coming to a stop.

After being greeted with music and dancing at the airstrip, we drove for about 30 minutes to the heart of Wamba district. About 500 Pygmies had come in from the surrounding forest to meet us, some having set out three days before.

As we drew near our destination, the route was lined on both sides with Pygmies. Short in stature (averaging 1.5 meters), many had skin patches indicating leprosy, as well as ulcers and sores suggesting other skin diseases. While I saw some people with deformities, there were no cases of severe disability. Later I learned that only those capable of walking through the forest had made the journey.

Pupils at a school on Pemba island, Zanzibar

About 500 Pygmies came in from the surrounding forest to meet us.

Registered prevalence among the Pygmies is said to be 57 cases per 10,000 population, but it is impossible to say how accurate this figure is. Pygmies tend to live deep in the forest, moving from place to place and making it difficult to keep track of cases.

Doctors and nurses visit the jungle on a regular basis to look for leprosy cases, and when they find one they entrust the drugs to the headman and ask him to supervise treatment. But according to one story I heard, the headman distributes medicine to everyone, regardless of whether or not they have leprosy, because all members of the tribe are treated as equals.

As we prepared to leave the village, we were plied with gifts, including a miniature antelope and a myna bird that we had to politely decline. I was also given a lucky cane, which I think I can say had an immediate effect.

On returning to the airstrip, we found the pilot in serious mood. He said he had been assured that the runway was 1,000 meters long, and had approved the flight on that basis. But on measuring it, he found it was only 650 meters: it would be touch and go whether we could take off. Heading down the bumpy runway, it seemed as if we would never become airborne; but at the last possible moment we did -- thankful that we didn't have that tenth passenger to weigh us down.


From the DRC I traveled to Tanzania. When I last visited in 2005, I had promised to come back and celebrate when the country passed the elimination milestone. Hence it was with real pleasure that I returned to mark Tanzania's achievement.

I also included a visit to Zanzibar on my itinerary, because I had heard there are still quite a few leprosy cases there. Zanzibar, whose two main islands are Unguja and Pemba, is part of Tanzania, but still enjoys a high degree of autonomy.

In fact, I learned from the health ministry that registered prevalence on Zanzibar is as high as 1.4 per 10,000 population. Although Tanzania may have achieved the elimination goal at the national level, there is clearly no room for complacency.

In my meeting with Zanzibar's President Karume on Unguja, I impressed upon him the need to do more to tackle leprosy. He promised to see that schools would screen for the disease, and that pupils would be taught about it in the classroom. But he also pointed out that in Zanzibar at least, there is little discrimination against people affected by leprosy.

Flying on to Pemba, I traveled to a village where about 30 families affected by leprosy live among the general population. I stopped at a kindergarten, where, just as the president had suggested, there was no stigma and the children studied side by side. Afterward, I had lunch outdoors with members of the leprosy community. As we chatted under a papaya tree about life in the village, I thought of the discrimination that so many others still face, and was happy that here at least they could live together with their families, integrated into the wider community.