The race to eliminate leprosy appears to be near the finish line, with new cases now hitting just some 200,000 annually — a far cry from 5 million two decades ago.
But complacency among the aid community can eat away this success, which is almost at arms length, argued Tatsuya Tanami, executive director of The Nippon Foundation, a leading organization in eliminating the disease and the stigma that comes with it.
“People’s attention naturally go to these big and difficult issues in public health … while [the problem of] leprosy is becoming a minor issue. That’s a very dangerous sign,” he shared with Devex on the sidelines of the African Regional Symposium on Leprosy and Human Rights, the third in a five-part series of conferences aimed at raising awareness about this public health issue, which remains very much endemic in 17 countries, including emerging donors Brazil and India.
Tanami said the problem of leprosy has indeed not gotten much attention under the Millennium Development Goals and may again be sidetracked in the post-2015 debate, but he remains confident that the goal to eradicate the disease by 2020 is “achievable” — if people “continue to keep the attention and their efforts to make this disease really under control and disappear from the Earth.”
Here are a few excerpts from our conversation:
What does the international community continue to not understand about leprosy?
As you know, leprosy is no longer a serious, big issue in terms of public health. And yet, in several countries, leprosy as a disease and medical issue still remains to be a very serious problem. Countries like India, for example, is producing as many as more than 100,000 new patients annually. And in Brazil, 30,000 new patients. [The problem persists in] Indonesia, Philippines, and many African countries too. There are as many as 17 countries which produce more than 1,000 new patients of leprosy every year. In most of the countries, leprosy has been already eliminated from the public health program.
But the huge number of leprosy affected people, the patients and cured people and their family members all around the world, they have been suffering from some kind of stigma and discrimination because of the misconception held by the general public — that leprosy is not curable.
But leprosy is just another disease that is now completely curable, least infectious, not hereditary, and not of course a divine punishment … but people still hold misconception. That whole stigma attached to the disease and the people affected by leprosy, that is still a social problem.
Leprosy is curable … and free treatment is available. And social discrimination has no place, because it is no longer a dangerous disease. Removing misconceptions, wrong interpretation and understanding on the disease is important [as well as] bringing awareness among the people about this disease … to eliminate [it] and the social stigma and discrimination against people affected by leprosy.
There’s a 2010 UN resolution condemning discrimination against people affected by leprosy. But what teeth does that resolution have? How can that help eliminate the social stigma associated with leprosy?
This resolution plus these principles and guidelines are very important. But these principles and guidelines are just written documents. Unless it is really implemented by member countries, it is just a paper. That is why we are organizing this symposium … to raise awareness among the government leaders of these regions, civil society leaders, media, etc., on this issue of leprosy and human rights violation against people affected by leprosy. And also to make people aware of these principles and guidelines, which should be implemented by member states and aid organizations to make better life available — and possible — for leprosy-affected people.
I understand that annually, cases are recorded below 250,000. And that to me sounds so close to the finish line. What are the obstacles that you face toward reaching that goal?
First of all, the number of newly detected patients has gone down, since, for example, early 1980s, there were as many as 5 million new patients found all over the world. And now, the number is only 200,000 new patients found in the world. But this doesn’t mean that leprosy has already gone, or disappeared. We still have this disease, and we still have places where leprosy is quite endemic.
The problem now is that in countries like India, some African countries, some Southeast Asian countries, and Brazil, there are many pockets of sub-national areas in where you still find many numbers of leprosy patients. And health care activities do not reach totally and sufficiently these places. The challenge now is to go to these subnational areas where for example nomad people are living, or where borderlines or mountainous places and so forth are inconvenient for these services to reach.
We need to put much more emphasis on the activities by field and medical officers to go to these places, and detect as soon as possible people affected by leprosy and provide sufficient medical care and treatment. Otherwise the number won’t go down.
Surprisingly, the disease persists in countries seen as emerging donors such as India and Brazil. Why is that?
Those two countries of course have made much efforts in eliminating leprosy. But as you know, these two are vast, huge countries with big population. And there are many cases where services are not sufficient. So while the nations grow in terms of their GDP and their economic growth and development, the health services don’t sufficiently reach those hidden, subpocket areas of the country. [India and Brazil] have been making a big effort in eliminating leprosy, and they have even more resources now to really [solve the problem].
With the problem persisting in these countries, how does that affect their own growth?
The number of leprosy affected people in these countries are very small, although of course India produces still 100,000 more patients. But compared to other major diseases, like malaria, TB and HIV/AIDS and so forth, the leprosy issue is becoming rather a minor public health problem. So I think these two countries, and any other country, can cope with this leprosy issue without such a big problem.
But what is worrying about is the complacency of the people who have been working for leprosy control. The number they see is going down, and so the program is going minor, and you don’t have to pay as much attention as before, and the effort will be minimized, that is a very dangerous sign. Since there are so many other big issues in public health, people’s attention naturally go to these big and difficult issues. And the money, resources and attention are being paid for these major, major public health issues. While leprosy is becoming a minor issue.
What we’re trying to say and work out is that people who are working for leprosy control in the still endemic countries, they need to continue to keep the attention and keep to continue their efforts to make this disease really under control and disappear from the earth.
Leprosy didn’t seem to catch the attention of the aid community a lot under the MDGs, and now, it doesn’t seem to be getting the attention in the post-2015 discussions. Does this not concern you?
You are right, that leprosy is not included in the MDGs. But as long as the disease is there, we have to continue our effort in tackling it. And the goal set by WHO is to eliminate leprosy by 2020. And for that, we will continue our work, even if it is not a major issue in [the development goals] discussion. It is definitely achievable. We can do that.
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