Governments should keep track of Hansen’s disease and support projects helping those who suffer from it, says Klaus Leisinger, chairman of the Novartis Foundation for Sustainable Development.

He visited Seoul last week to receive the Korea Hansen Grand Award from Hanvit Welfare Association, a government-affiliated agency to fight the disease better known as leprosy.

Hansen’s disease is caused by two strains of bacteria. While most healthy individuals are able to fight off the infection before any symptoms develop, the disease can cause nerve damage, and secondary infections can cause severe deformities if left untreated.

The first visible symptom of leprosy is discolored spots on the skin, at which point the patient can be fully cured without any further symptoms developing.

Although communities of Hansen’s disease patients supported by organizations such as Hanvit are well known here, it is little known that new cases of leprosy continue to occur each year in Korea.

According to Hanvit, between five and 10 new cases occur every year. Although the figures put the disease well below the World Health Organization’s standard for elimination, Leisinger says that awareness must be kept up. A disease is considered eliminated by the WHO when the prevalence falls below one case per 10,000 people.

“(The first involvement) was 30 years ago when Ciba developed a multi-drug therapy against leprosy. I was of the opinion that having the drug gave the company a special responsibility,” Leisinger said. Ciba refers to Ciba-Geigy, a Swiss pharmaceuticals maker that was merged with another Swiss drug maker to form Novartis. He added that from that starting point, a leprosy fund was created to finance social marketing campaigns to raise awareness.

“(We want) to raise two kinds of awareness: one, that there is leprosy, and two, that it is a normal infectious disease ― it’s not the curse of the gods, not the revenge of your stepmother. It’s a normal thing.”

In addition to social marketing to raise awareness, Leisinger’s foundation has been providing the multi-drug leprosy treatment for free since 2000. The foundation plans to continue providing the drugs for free until 2020, by which time Leisinger estimates that the disease’s prevalence rate around the world will have fallen sufficiently low to rule out a significant number of new transmissions.

He added that medical professionals also need to be taught leprosy-related topics in order to maintain a certain level of awareness to allow the disease to be diagnosed early.

According to Leisinger, while leprosy is no longer a health concern in most countries, it remains an issue for Brazil on a national level, and in parts of developing nations such as India and the Philippines.

“For very poor societies, sickness is the normality, not health. If you have worms, malaria and malnourishment, then two spots on the skin are not going to worry you because you have enough problems. This is why the level of awareness is important,” he said, adding that people with malnourishment or preexisting conditions are more likely to develop leprosy.

Leisinger also pointed out the “two faces of leprosy,” saying that support must continue to be provided for patients who are unable to care for themselves.

“You have young or middle-aged people who are infected, and we must find them and treat them. Then there is the other face of leprosy: patients who are in their 60s, 70s and 80s, who have been suffering since before there was a treatment available,” he said. He added that an estimated 5 million to 6 million people worldwide have been deformed and left disabled by the disease.

“Let’s look after the dignity and welfare of these people while they are still around, because they have had an unhappy time most of their lives.”

By Choi He-suk (cheesuk@heraldcorp.com)