Interview | “Leprosy is a poverty-related disease. As long as poverty exists, leprosy exists”

In Nepal, there is still a serious stigma about leprosy. Patients do not want other people to know about their diagnosis.

Luc Comhaire (L) and Dr Alberto Roggi Photo: Manish Aryal/Nepal Live Today

Manish Aryal

  • Read Time 5 min.

The Damien Foundation is a pluralist and apolitical NGO aiming for a future ‘free of leprosy and tuberculosis.’ The foundation aims at making a difference in the global fight against leprosy, tuberculosis and other neglected poverty-related diseases. Damien Foundation Nepal is cooperating and collaborating with the government and local NGOs. The foundation is also coordinating with other international organizations.

Luc Comhaire, Project Manager and Dr Alberto Roggi, Medical Advisor for Damien Foundation’s Nepal projects based in Brussels, Belgium had visited Nepal recently.  Luc Comhaire has nearly 40 years of international experience in the field of Leprosy and Tuberculosis control while Dr Roggi is an infectious disease specialist. He also has more than a decade long international experience in the field of TB and Leprosy control. Nepal Live Today spoke to them on ranges of issues including Damien Foundation’s Nepal projects, goal of eradicating leprosy and tuberculosis and challenges. Excerpts:

What brings you to Nepal?

We are here as experts of the Damien Foundation. In 2015, we were invited by the national program to provide assistance and we sent an expert to make a mission to see whether there were possibilities for working in Nepal. 

One year after that mission in 2015, a team from the Damein Foundation came to Nepal for a project formulation mission, where we decided what exactly the problem was, and what we would be able to do to help the government in the health sector. In  2017, the decision to start cooperation with Nepal was taken. Since then, we have been working here to help people with leprosy and Tuberculosis.

How do you introduce Damien Foundation? What are the major areas of activities of your organization?

Specialized in leprosy and tuberculosis control, we are a Belgian NGO. As we are specialized and governments are asking us for collaboration, we started to work in Nepal. The first five years agreement program is over now, and we are planning to renew that agreement for another three years in total. And after that, we will see how things evolve. There has been some good progress already. We have been able to provide technical assistance to introduce short treatment for tuberculosis, for multi-resistant tuberculosis. That’s a nine-month treatment, the previous treatment was of 20 months and they had to stay in a hostel for up to 20 months which was quite disruptive to their family life. Many people wanted to go home and abandon the treatment.

Here in Nepal, there is still a serious stigma about leprosy. Patients do not want other people to know about their diagnosis. Likewise, many people seek medical help, not in the nearest clinics, but further away, so people don’t know about their health situation. 

Thanks to the short treatment of nine months, things have changed. It’s a shorter treatment, a more efficient one, and cheaper. Another area of work with respect to TB was a decentralization that treatment needs to be made available to patients from places as near as possible from their homes and it should be made easily accessible so that the patients can continue living with their families, and are not hospitalized for too long. The outcome in terms of cure rate is as good as hospitalized treatment, which is a positive thing. So now, we are in the phase of expanding community-based direct observed treatment and gradually expanding it in large scale in collaboration with the National TB Control Center.

Dr Alberto Roggi Photo: Manish Aryal/Nepal Live Today

You have been doing this program for five years. Which are the major areas that you have been working on outside the Kathmandu valley?

We are supporting projects in nine districts of three provinces. They include eastern and western Nawalparasi, Rupandehi, Kapilvastu, Banke, Bardia, Kailali, Kanchanpur and Dadeldhura of Gandaki, Lumbini and Sudurpaschim provinces. We have been supporting the TB Referral Centers and Leprosy Referral Centers in different districts. In addition, support is provided for the diagnosis and treatment of TB/Leprosy patients and care after cure is provided. We also provide income generation training and livelihood support for the patients and persons affected by Leprosy.

You have long been working in the field of eradicating leprosy. Where does the world stand today in terms of eliminating leprosy?

The problem with leprosy is that you have a very long incubation time. The average is between two and five years. The extremes can be 20-25 years or more. So, a patient who is contaminated with leprosy bacilli today can live for up to twenty or twenty-five years without any symptoms. Eradication is something that cannot be done tomorrow. So, WHO uses the terminology ‘elimination of leprosy’ instead. Elimination means less than one patient per ten thousand population. We are in that stage here in Nepal. But that doesn’t mean that there is no leprosy anymore.

The government has a lot to do in the health sector in Nepal. It is normal that the government cannot do everything and hence there is a need for collaboration, cooperation and partnership with various organisations.

There are still about 3000 cases per year (the last WHO report, 2021, reported 2394). And it is not equally spread either as some areas have more contamination rate than others. It depends on different factors, but the major contributing factor is poverty. It is a poverty-related disease. Living conditions, hygiene, and general health conditions affect leprosy contamination.  Another issue we have to consider while talking about this disease is the stigmatization related to it. It becomes difficult for the patients to have accessible facilities and treatments due to the stigmatization. Leprosy elimination is not just a medical approach, we have to work along with the community for more efficient integration of the program.

Luc Comhaire Photo: Manish Aryal/Nepal Live Today

How long does it take to completely cure leprosy?

There are two different types of leprosy bacteria: Paucibacillary leprosy and Multibacillary leprosy. The diagnosis is clinical and we provide drugs for six or twelve months in a multi-drug therapy. Completing this therapy can cure the disease. The problem is the possibility of disabilities and the reaction to the treatment.  The cutaneous lesion of Leprosy has to be differentiated from other skin disease. Patients are often  referred to dermatologists. 

We need to find and detect Leprosy cases early and treat them before the appearance of serious health issues. 

The problem arises when leprosy bacteria start to attack the peripheral nervous system, with inflammation of the nerves, leading to the insensitivity of the hands, feet and cornea. Also, the motor nerves can be attacked which can lead to paralysis of the fingers, the feet or the eyelids. Paralysis of the eyelids may eventually lead to blindness. These nerve issues are the most worrisome and the most dangerous. Therefore, we try to detect patients as soon as possible to prevent these outcomes. Unfortunately, there are several patients who are only diagnosed after these nerve-related issues start. 

What have been the changes from when you started working to now in the context of the situation of leprosy and tuberculosis in Nepal?

Over the last three years, due to Covid-19, the number of new patients detected and reported was also influenced by it.

From the programmatic perspective, the government has introduced new TB drugs, increased testing and installed many GeneXpert machines, enhanced lab capacities and so on to test drug resistance. Similarly, leprosy control and disability management section of Epidemiology and Disease Control Division, Ministry of Health and Population has adopted roadmap to Zero Leprosy 2030. So, despite COVID 19 Pandemic, the efforts have been made and government of Nepal has taken various steps to contain these diseases.