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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Global Emissary

The Astrakhan institute remains the focus of leprosy activities in Russia.

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Touring the wards at the Institute of Leprosy Training and Research in Astrakhan

As of January 1, Russia had 382 registered patients. I met several of them when Dr. Duyko took me on a tour of the institute, which also functions as a sanatorium. Some have been there for years, while others come temporarily for medical checkups, rehabilitation and treatment for leprosy-related conditions.

Among those I spoke to were a pair of sisters, Maria and Nina. They were staying in comfortable residential accommodation and had nothing but praise for the treatment they received from the doctors and nurses.

I gather that Dr. Duyko has done much to make the institute more patient-friendly. He has also brightened up the grounds - sowing lawns, planting flowers, putting up colored lights and even adding some garden gnomes.

There are reminders, too, of an earlier era in the shape of a large statute of Lenin as well as a shuttered prison. In Soviet times, registered leprosy patients who were convicted of crimes were sent here to serve their sentences. I was told that the last prisoner was released in 1987.

My stay in Astrakhan included a visit to the village of Vostochnoe. About an hour's drive from the city, this out-of-the-way community of about 1,000 people was established by the government in 1960 to provide people released from treatment with somewhere to live. Today, only around 10 or 15 households have connections with leprosy.

I visited several residents, spending time in the garden of Galina and her husband, who live off their pensions in a house provided by the government. They proudly introduced me to their 14-year-old son, Aleksander, who excels at judo.

I also met a 76-year-old widow. She first moved to the village with her late husband in 1968 after being discharged from the sanatorium at Astrakhan. She has no gas or running water, as she can't put aside enough from her pension to pay to have her home connected. In addition to her daily hardships, she told me, she had been the victim of a burglary. Everything of value was taken from her house, she explained, even her iron. The incident occurred during one of her stays at the sanatorium.

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This elderly resident of Vostochnoe said she had no gas or running water and had been the victim of a burglary.

After I concluded my stay in Astrakhan, Dr. Duyko led me on an overland journey between the Caspian and the Black Seas. My destination was the North Caucuses, where I would visit two long-established leprosaria. After an 11-hour drive that took us across the vast plains of the Kalmyk steppe and past fields of sunflowers that seemed to spread out forever, we arrived at the town of Geogievsk in Stravropol territory.

The next morning we drove on to Tersky leprosarium. The oldest leprosarium in the Russian Federation, it marked its 115th anniversary earlier this year. At the time of my visit, Tersky had 51 inmates and a total of 43 staff. The most recent person to be admitted with leprosy was in 2009. The leprosarium's director, Dr. Mikhail Gridasov Ivanowic, grew up in Tersky village, and it was always his ambition to become a doctor and work here.

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Dr. Duyko and Dr. Drabik (standing left and right) with sisters Nina and Maria

Tucked away deep in the countryside, Tersky is home to people who are cured of the disease but still require care, as well as others who are cured but have their own reasons for staying. As one elderly man told me, "I remain here because I don't want to cause problems for other people."

From Tersky I traveled on in the direction of the Black Sea. After spending the night in Krasnodar, I arrived at Abinsky leprosarium. This is another facility with more than a century of history. It was established in 1905 by a military surgeon who was concerned about the large number of cases of leprosy he found in the ranks.

The assistant director, Dr. Marina Gieorgievna, has worked at Abinsky for 29 years and is the daughter of a previous director who worked there for 30 years. In her father's time there were as many as 500 patients, but now there are just 40 - and three times that number of staff to care for them. The last patient with leprosy was admitted in 1998.

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Dr. Naumov, Kutschurgan's director: "I have seen so much," he told me.

Given the facilities and staff on hand, I asked whether people with other illnesses could seek treatment at Abinsky. But I gather this is not permitted, because it was established by law to function as a leprosarium.

Some of the residents have lived here for many years. When I asked if they could leave, I was told this was possible, but that in reality it was difficult for various social reasons. In contrast, it was emphasized to me, at Abinsky they are well looked after, don't have to worry about food or accommodation, have access to newspapers and magazines for free and can even be fitted with artificial limbs if necessary. In all, I was told, they lead a good life and there is no reason to leave.

UKRAINE (July 4-5)

After departing Krasnodar for Moscow the previous evening, on July 4 I flew to the Black Sea port of Odessa in the Ukraine. The country's only leprosarium, Kutschurgan, is a one-and-a-half hour drive west of Odessa, close to the border with Moldova.

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The grave of the Korean at Kutschurgan cemetery

The leprosarium was established in 1945 by an Odessa-born ophthalmologist who saw cases of leprosy earlier in his career when working at a hospital in Samarkand in present-day Uzbekistan. Noticing that he was coming across more patients with the disease in Odessa, he decided to do something for them.

As we drove to the leprosarium, the deputy director, Dr. Yuriy Rybak, explained that the area had been settled by German immigrants some two centuries earlier. When the German population evacuated during the later stages of World War II, the leprosarium took over some of the empty houses they left behind.

Kutschurgan has seen about 300 patients in total, with as many as 150 present in the early days. Today there are just 12 - seven men and five women - out of a total of 17 registered patients in the whole country. The most recent case was admitted in 2004.

I was surprised to learn that multidrug therapy (MDT), the WHO-recommended treatment for leprosy, only reached the leprosarium in 1997. It didn't come from the health ministry, but was brought by Dr. Drabik on her first visit.

The residents live in their own houses, with gardens that were blooming with flowers at the time of my visit. Among those I called on was Anastasia. She showed me around her home, which was decorated with family photographs and paintings. A widow, she said she had a son in Odessa "and four cats to keep me company." Speaking with another resident, Maria, I was moved when she told me that she had prayed for the people of Japan after the earthquake and tsunami disaster of March 2011.

The director of the leprosarium is Dr. Vladimir Feodovich Naumov. He has been at Kutschurgan for 43 years. He was employed at a nearby hospital when he was asked to work at the leprosarium. "I wanted to help and it became my destiny," he said. "In the past it was a tough disease. There were people who couldn't walk. I have seen so much."

He told me about one patient, of Korean descent, who was in poor shape when he was admitted to Kutschurgan. One day, his teenage son turned up out of the blue, having traveled from Kazakhstan. Twenty-four hours later, the boy was found dead.

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Calling on a resident of Tersky leprosarium

Following a police investigation, the father was convicted of murder, over the objections of Dr. Naumov, who doubted his patient was physically capable of such an act. The father spent six years behind bars, receiving regular visits from leprosarium staff, who brought him food. But prison weakened him, and by the time he was released he was sick with tuberculosis. He died soon after and is buried in the leprosarium's cemetery. I gather that the exact circumstances surrounding his son's death remain unclear.

I concluded my visit by going to the cemetery to see the father's grave, and the graves of others who had seen out their days in Kutschurgan, separated from society. Like the Korean, many were originally from outside the Ukraine and had died far from home. As Dr. Drabik noted, "They remain apart in death, as they were in life."

I am very grateful to Dr. Duyko in Russia, to Dr. Drabik, and to the WHO offices concerned for helping to make the arrangements for my visit. I gained a better understanding of the status of leprosy in the region, and of the leprosaria that have been a part of that history.