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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: In the Footsteps of Dr. Hansen

With Sigurd Sandmo (left) and Dr. Irgens (right) in Dr. Hansen's study

NORWAY (September 12-13)

In September I made my first ever visit to Bergen, the city in Norway that holds such an important place in the history of leprosy. As one who has made eliminating the disease my life's mission, it was a very special journey for me.

It was in Bergen that Danielssen and Boeck published Om Spedalskhed (On Leprosy) - the first modern study of the disease - that the world's first national medical registry was established to record the names of patients with leprosy, and where Dr. Armauer Hansen identified the bacillus that causes the disease in 1873.

In the 19th century, when leprosy was disappearing from other parts of Europe, case numbers were on the rise in Norway, particularly along the west coast, where it remained a significant health problem until 1900. At one time, Bergen had three leprosy hospitals and the largest concentration of leprosy patients in Europe.

The oldest of the three hospitals, St. Georges, was founded in 1411. At its busiest, in the 1840s, it had 179 patients. Today one of its buildings is home to the city's Leprosy Museum.

Located in a quiet part of town, the wooden structure dating back to 1754 is immaculately preserved. I was shown around by Sigurd Sandmo, today the head curator for many of Bergen's

museums and former director of the Leprosy Museum. I saw the modest quarters where patients lived, two to a room, with a shared desk between them, and was shown the kitchen where they cooked their own food. Apparently, there were chaotic scenes at meal preparation time.

The hospital church, which has a mural showing Christ blessing 10 people afflicted by leprosy, was open to Bergen's citizens. For their part, up until 1891, patients were free to go into town, sell the vegetables they grew in the hospital grounds, and go shopping.

Another site I visited was the Bergen branch of the National Archives. This holds a major part of the Bergen Leprosy Archives, which are listed on UNESCO's Memory of The World Project. An important part of these historically important archives is the National Leprosy Register, introduced by royal decree in 1856. This was the first disease-specific patient registry anywhere in the world. In the first year, 2,858 patients were registered. In one village, 87 people out of a population of 2,500 inhabitants, or 3.5%, had the disease.

With the introduction of the register, doctors were required to register every case of leprosy in their district - including details of name, address, birthplace, family composition, length of time since falling ill, and changes of address. This information was then to be forwarded to the country's chief medical officer for leprosy, a post established two years before.

The registry was a groundbreaking development, and the data collected advanced the epidemiological study of leprosy. It was in the registry that Hansen found evidence that leprosy was an infectious disease, encouraging his search for the bacillus. The data is still used for important epidemiological research today.

I took a moment to sit at Dr. Hansen's desk and reflect on his achievements.

The panel listing the names of every patient in Norway's leprosy register, displayed at Bergen's Leprosy Museum

Hansen, who later became the chief medical officer for leprosy, worked at Pleiestiftelsen No. 1, a leprosarium founded in 1850. Today it houses the University of Bergen's Department of Public Health and Primary Health Care. There I met Dr. Lorentz M. Irgens, the director of the Medical Birth Registry of Norway. Dr. Irgens is also a leprosy researcher, and delivered a very interesting paper on the factors contributing to leprosy's decline in Norway at a symposium on the epidemiology of leprosy in 1981 that I attended together with my father, the late Ryoichi Sasakawa.

interior of the museum

Dr. Irgens kindly took me on a tour of the facilities, and showed me the room that served as Dr. Hansen's study - preserved just as he left it, along with his books, instruments, microscopes and specimen jars. I took a moment to sit at Dr. Hansen's desk and reflect on his achievements.

I was told that even after Dr. Hansen discovered the bacillus, he continued to toil for supporting proof. He spent many painful days subjected to the criticism of other researchers, including his father-in-law, Daniel Cornelius Danielssen - the coauthor of On Leprosy - who believed that the disease was hereditary.

In 1879, Hansen was forced to resign from the leprosarium after conducting an experiment on a female patient without her consent; however, he continued as chief leprosy officer until his death. It was the first case in Norway where patient rights were discussed in court.

While visiting the Leprosy Museum, I listened with interest to Sigurd Sandmo's explanation of how the museum changed its orientation from 2003 to put a human face on the disease. The idea was to enable present-day Norwegians to rediscover their country's forgotten history. Leprosy, and people who had the disease, are also part of Norway's history, Sandmo said.

Symbolizing this is a panel in the museum displaying the names of all 8,231 patients in the leprosy register - each registered under his or her own name. This impressed me greatly and I look forward to the day when every country in the world acknowledges those of its citizens affected by leprosy, and their family members, as part and parcel of the nation's history and social fabric.

Some 140 years have elapsed since Hansen's

discovery of Mycobacterium leprae. Despite treatment with multidrug therapy, leprosy has yet

to be erased from the world. Brazil and Timor Leste have still to move beyond the milestone of eliminating leprosy as a public health problem. Even countries that have, such as India and Indonesia, record a large number of new cases each year.

There is much more to learn about leprosy: the route of transmission, why people are still being infected, why the disease has largely disappeared from the "north" but continues to be a burden in the "south."

In the 19th century, the work of researchers such as Danielssen, Boeck and Hansen made an enormous contribution to our understanding of leprosy. Now, in the 21st century, more research is needed, using new tools available to us, to advance our knowledge of the disease. These are some of the thoughts I had on visiting Bergen - a city that has played an important role in international leprosy research and that has done a marvelous job of preserving that history.