The Bergen International Conference on Hansen’s Disease: 150 Years Since the Discovery of the Leprosy Bacillus (Session 2: Human Rights and Dignity)
Dr. Alice Cruz, United Nations Special Rapporteur, Dr. Shigeki Sakamoto, Professor Emeritus, Kobe University, representatives of national associations of persons affected by leprosy and panelists.
As many of you know there are two aspects to leprosy. One is the medical aspect, and the other is the stigma and discrimination, that is to say, human rights issue. I always explain leprosy using an analogy to motorcycle. The front wheel is to cure the disease and the back wheel is to eliminate discrimination. Unless the two wheels work together, there can be no real solution to this problem.
In the one hundred and fifty years since the discovery of leprosy bacillus by Dr. Hansen, anti-leprosy drugs have been developed and leprosy became totally curable with early detection and early treatment. Of course, more efforts are needed as there are about twenty thousand new cases discovered annually, and detection activities have been stagnant due to the COVID nineteen pandemic, but thanks to the efforts of many people, we have reached the last mile medically.
On the other hand, the fight against leprosy as a human rights issue has only just begun. Looking back on my own half a century struggle against leprosy, I remember that for the first thirty years, I focused on curing the disease. However, one day, I saw people who had been cured of their disease, continuing to beg on the streets and forced to live in leprosy colonies, I was shocked that their living conditions had not changed at all. They continued to be discriminated and excluded from society. I then realized that the fight against leprosy is not only a fight against the leprosy bacillus, but also a fight against discrimination on the part of society. This is where the fight against leprosy as a human rights issue began.
So how serious is leprosy as a human rights issue? One of the characteristics of discrimination against leprosy is that not only patients but also those who have been cured and even their families are subjected to discrimination. A simple calculation shows that even today, about two hundred thousand new cases are discovered each year, so if each family has five members, for example, each year one million people are newly discriminated. Considering that the number of new cases
used to be in the millions, I believe it can be estimated that tens of millions of people affected by leprosy and their families experience discrimination. Do you not agree that the discrimination of this magnitude and on a global scale is out of the ordinary.
To combat this extremely serious discrimination, I decided to appeal to the then United Nations Human Rights Commission, but to my surprise, not only had the Commission never addressed the human rights issue of leprosy, but the more than twenty human rights experts on the Subcommittee were not even aware of the existence of human rights issue related to leprosy. This year marks the one hundred and fiftieth anniversary of the discovery of leprosy bacillus by Dr. Hansen, and while leprosy as a disease is approaching its last mile, human rights issues have unfortunately not changed much from then. This should give you some idea of the scale of discrimination against leprosy and the seriousness of the problem, which has gone unnoticed for so long.
In two thousand four, I was fortunate to have the opportunity to speak for three minutes at the United Nations on the topic of “Leprosy and Human Rights”. This was the first public statement on leprosy ever made at the United Nations, and I would like to share some quotes below:
“So Mr. Chairperson, why has this never been treated as a human rights issue? This is because these are abandoned people. They have had both their names and their identity stripped away. They cannot cry out for their rights. They are silenced people.
That is why I stand before you today. To draw your attention to these voiceless people.
Mr. Chairperson, leprosy is a human rights issue. I urge the members of this commission to rectify this problem. Develop a resolution. Support worldwide research. And create guidelines that guarantee freedom from discrimination for all affected by leprosy.”
This was one impetus that led to the unanimous passage of a resolution and the “Principles and Guidelines” on the elimination of discrimination against people affected by leprosy and their families by one hundred and ninety-two member states at the UN General Assembly seven years later, in two thousand ten. These achievements would not have been possible without the efforts of people affected by leprosy themselves, not to mention those of Dr. Shigeki Sakamoto, professor emeritus at Kobe University, who is participating in this conference. There is no doubt that they have given courage to many people affected by leprosy.
However, the fact that such a resolution was passed does not mean that the problem of discrimination in society has been solved. There are still many people who, partly due to my own inability to help them, who are still burdened with the self-stigma of wondering if they have human rights. They are always afraid that they will be subjected to new discrimination if they confess to having leprosy. Also, it is reported that there are still one hundred and thirty-nine discriminatory laws against people with leprosy in twenty-four countries around the world, including developed countries, and that many regions of the world still have their own discriminatory practices.
Dear participants, I want you to know that discrimination against leprosy is so deeply entrenched in our society. Please know that leprosy is an ongoing and a serious human rights issue. I have visited more than one hundred and twenty countries over the past half a century and have seen people affected by leprosy, who have been abandoned by society and their families, living miserable lives, shoulder to shoulder. On the other hand, it is also true they have survived the hardship. Representatives of national associations of people affected by leprosy are here with us in this conference, and recently they have begun to stand up and speak out in many parts of the world. Among them are several people who are leading the fight against leprosy and achieving remarkable results. Please know who they are and listen to their voices.
It may take a long time to solve this problem. However, leprosy should not be an exception to the various human rights issues being actively discussed today. We must not turn our eyes away from this reality, and we must continue the fight for a solution. Let us further strengthen our efforts to realize a truly inclusive society where people affected by leprosy and their families can play an active role as members of society in the foreseeable future. Thank you very much.