Leprosy is an infectious disease that has existed since the dawn of recorded human history. For most of that time the cause of the disease was unknown and no effective treatments were available; as a result, leprosy patients were ostracized from the community and forced to live in seclusion. Even today, when leprosy is completely curable, the discrimination against people affected by it remains. The all-important first step toward overcoming that prejudice is to clear up misconceptions about leprosy.
History of Leprosy and Its Treatments
Leprosy is a disease caused by infection from the bacterium Mycobacterium leprae. The disease harms the skin and peripheral nerves, and if not treated promptly with effective medication it can severely transfigure a patient’s face and limbs. Leprosy infection occurs when a person whose immune function did not adequately develop during infancy frequently ingests large quantities of the bacterium ingested through the mouth and nose, but the infectious power of the bacterium itself is extremely low and not easily transmitted from one person to another. Moreover, because the onset of the disease is influenced by a number of other factors (including the quantity of bacterium ingested, individual immunity levels, and lifestyle factors), even if someone is infected with the bacterium, it is quite rare for the infection to lead to the outbreak of the disease as long as the person is well nourished and living in sanitary conditions. In countries where public sanitation, nutrition, and economic conditions are poor, the number of new cases of leprosy in a year can be in the tens of thousands.
Prior to the introduction of effective treatments for leprosy, it was viewed as a terrifying affliction. The breakthrough came in 1943, when the American physician Guy Henry Feget verified the efficacy of the drug “promin” in treating leprosy. In the 1950s, the successor to promin, the antibacterial “dapsone,” came into use worldwide to treat leprosy. Unfortunately, dapsone-resistant cases of leprosy emerged in the 1960s and 1970s. Medical researchers sought to counter that resistance through the combined use of medications, resulting in the introduction of the “multidrug therapy” (MDT) of leprosy in 1981 by a research group of the World Health Organization.
This treatment method remains effective today; it has made leprosy a completely curable disease by means of destroying the infective power of the bacterium Mycobacterium leprae in a short period of time. Moreover, one administration of rifampicin, which is the component part of MDT, destroys 99.9% of the bacterium, thus making it immediately impossible for a leprosy patient to transmit the disease to another person. Thanks to the development of MDT, the number of leprosy patients dropped from the level of 5 million in the 1980s to around 180,000 by 2011.
Leprosy-Related Initiatives of the Nippon Foundation and Sasakawa Memorial Health Foundation
In the 1960s, the Nippon Foundation began to provide financial assistance to leprosy-related facilities located in Japan. Its anti-leprosy efforts expanded to the global level thereafter as a result of Ryoichi Sasakawa, the chairman of the Nippon Foundation, meeting Morizō Ishidate, the first dean of Tokyo University’s Department of Pharmacology, who was the first in Japan to succeed in synthesizing the leprosy drug promin. Together the two men agreed to pursue the common goal of eliminating leprosy throughout the world. Toward that end they established the Sasakawa Memorial Health Foundation in 1974, as an institution specializing in the effort to address the problem of leprosy.
Kazuko Yamaguchi, the director of the Sasakawa Memorial Health Foundation, explains more: “The Nippon Foundation and the Sasakawa Memorial Health Foundation were first to confront head-on the issue of leprosy, which had not been dealt with in a systematic manner by any country around the world up to that point. The organizations saw the need to treat the disease as a public health issue, rather than an issue of charity, and to cooperate with the health ministries of each country involved and establish cooperation with the WHO.”
In raising the aim of eliminating leprosy globally, the two organizations immediately set about getting the WHO involved in the effort. The Nippon Foundation and the Sasakawa Memorial Health Foundation provided assistance to the WHO so that it could become involved in a full-fledged effort to fight leprosy—which it had been unable to do previously for lack of personnel and funds. Yamaguchi notes that, “From 1975 to the present, the Nippon Foundation has covered the bulk of anti-leprosy expenditures made by the WHO.”
In 1991, at the WHO’s 44th World Health Assembly, the member states pledged to eliminate leprosy as a public health problem by the year 2000, setting the historic goal of keeping the number of leprosy patients in a country below the level of one per 10,000. Toward that end, the Nippon Foundation distributed MDT to countries around the world. In the five-year period from 1995 to 1999, the foundation donated 10 million dollars each year to pay for MDT and supply it to countries free of charge via the WHO. The Nippon Foundation also focused on setting up an assistance infrastructure via the health ministries of countries to ensure that the drugs reached the hands of those in need of them. These efforts paid off; the number of countries facing a public health problem from leprosy fell from 122 in 1985 to just 1 (Brazil) by 2011.
This does not mean, however, that the goal of eliminating leprosy has been reached, as Yamaguchi points out: “The infectious power of the bacterium Mycobacterium leprae is weak, but it remains latent within a person’s body. This means that even in Japan there is usually a new case of leprosy every few years. It is a difficult task to bring the number of leprosy cases down to zero. This is why we have set the goal, not of ‘uprooting’ or ‘annihilating’ leprosy, but working to bring the number as close to zero as possible. We also want to reduce the number of patients who are first diagnosed only after the disease has begun to impact their fingers or other parts of the body. In order to make sure that the disease does not wreak a heavy toll on its patients, we would like to see a global effort to promote early diagnosis and prompt treatment.”
Restoring the Dignity of Leprosy Patients and Their Families
The goal raised by the WHO to keep the number of leprosy patients below the level of one per 10,000 had basically been achieved, thanks to the free distribution of medication, which was carried out by the WHO until 1999 and thereafter by the Swiss pharmaceutical company Novartis International AG. But this does not mean that the problems associated with leprosy have been overcome.
Even though leprosy is not a life-threatening disease, but if not treated properly at an early stage, it has the effect of disfiguring some parts of a person’s body. Because of this disfigurement, people affected by the disease have—since the dawn of history—been subject to social ostracism and seclusion. For this reason, it is said that many have decided to end their own lives after learning they had contracted leprosy. Most of those contracting the disease lost their homes and were also cut off from their hometowns and relatives, and unable to reenter society even if cured of the disease. Leprosy patients have been deprived of their fundamental human rights as a result of their exclusion from a whole range of social events and activities, including education, employment, and marriage. Today, now that effective treatment of leprosy is possible, some of the systematic and legal forms of discrimination against those affected by the disease are being eliminated, but the stigma dating back thousands of years against those afflicted by the disease remains today in the minds of people around the world.
People affected by the disease often say: “Once you have become a leprosy patient, you remain one for life.” The stigma of being a leprosy patient is one that remains?and with it discrimination from other people. But the Nippon Foundation has done its utmost to lend an ear to the suffering of those who have been unable to reenter society as a result of leprosy, and of their family members.
Based on its view that overcoming discrimination requires conveying to society the true voices of those affected by leprosy, the Nippon Foundation began to set up organizations in India and in other countries to help those affected by leprosy to return to society. By scattering these organizations around a country, and bringing the leprosy victims overlooked by society together to enhance their power of expression, this can serve as a driving force to influence governments and the media. But consolidating the power of those who have been the most vulnerable members of society is not easy task. The important thing, though—as those who have reentered society have said—“is to keep taking one more step forward.”
In the effort to influence the views of society, the Nippon Foundation in 2003 called on the Office of the UN High Commissioner for Human Rights to address the problem of leprosy, and in 2004, at the 60th meeting of the UN Commission on Human Rights (as it was called at the time), Chairman Sasakawa made the first presentation on leprosy as a human rights problem. In his speech at the event, Sasakawa emphasized the following: “Because of the historic prejudice against those affected by leprosy, they were excluded from society and robbed of their opportunity to express themselves. I have been participating up to now in the movement of those who have recovered from the disease and are bravely standing up for their rights. My hope is that all of you will listen to what their representatives have to say.” And at that point, he yielded the podium to representatives from India, Nepal, and Ghana. The participation at the meeting of those former leprosy patients who reentered society had a huge impact on the members of the commission.” The outcome of the meeting was that the commission resolved to conduct a survey on discrimination against people affected by leprosy and their families.
Since that time, the Nippon Foundation has continued to encourage various stakeholders in Japan—including the Ministry of Foreign Affairs—to get involved in the effort to end this problem of discrimination. In 2006, the first Global Appeal to end the stigma attached to leprosy was issued under the leadership of Chairman Sasakawa, who is also the WHO’s Goodwill Ambassador for Leprosy Elimination and the Japanese government’s Goodwill Ambassador for the Human Rights of People Affected by Leprosy. And this Global Appeal has continued to be issued every year since then, based on the endorsement of world leaders—including the Dalai Lama and former US President Jimmy Carter.
In 2008, a resolution titled “Elimination of discrimination against persons affected by leprosy and their family members” was submitted to the 8th meeting of the UN Commission on Human Rights, and adopted by unanimous consent in 2010. Then, in 2012, a resolution to eliminate discrimination of persons affected by leprosy, together with principles and guidelines, was unanimously adopted by the member nations of the UN General Assembly. In order to raise awareness of and promote the implementation of the resolution, as well as the principles and guidelines, the Nippon Foundation held international symposiums in five locations worldwide in order to appeal to the government agencies and NGOs of various countries and discuss concrete policies aimed at overcoming discrimination—and the foundation continues follow-up efforts toward that end.