DOLENTIUM HOMINUM No. 90 – year XXXI – No. 1, 2016

JOURNAL OF THE PONTIFICAL COUNCIL FOR HEALTH CARE WORKERS (FOR HEALTH PASTORAL CARE)

Editor-in-Chief Archbishop Zygmunt Zimowski Executive Editor Monsignor Jean-Marie Mupendawatu

Editorial Board Dr. Antonino Bagnato Don Marco Belladelli Dr. Daniel A. Cabezas Gómez Sr. Anna Antida Casolino Prof. Maurizio Evangelista Rev. Bonifacio Honings Dr. Beatrice Luccardi Dr. Rosa Merola Mr. Luigi Nardelli Msgr. Jacques Suaudeau

Editorial and Business Offices: Pontifical Council for Health Care Workers (for Health Pastoral Care) 00120 Vatican City; Tel. 06.698.83138, 06.698.84720, 06.698.84799 - Fax: 06.698.83139 e-mail: [email protected] www.holyseeforhealth.net

Published three times a year. Subscription rate: 32 € postage included Printed by Editrice VELAR, Gorle (BG) Cover: Glass window Rev. Costantino Ruggeri Poste Italiane s.p.a. Spedizione in Abbonamento Postale - D.L. 353/2003 (conv. in L. 27/02/2004 nº 46) art. 1, comma 2, DCB Roma 2 DOLENTIUM HOMINUM N. 90-2016

Contents

3 On 12 July 2016 the Lord Called unto SECOND SESSION Himself Archbishop Zygmunt Zimowski ASPECTS OF 4 Telegram of the Holy Father 31 1. Dignity and the Right to Protection of Health of People with 5 Personal Memories of H.E. Ms. Barbara A. Frey Msgr. Zygmunt Zimowski Father Ján Ďačok SJ 34 2. Stigma and : the Role of the Nippon Foundation 6 Remembering H.E. Msgr. Zimowski in Tackling Leprosy Prof. Domenico Arduini Mr. Tatsuya Tanami 9 The Last President 35 3. Stigma and Toxic Imagery H.E. Msgr. Zygmunt Zimowski Mr. José Ramirez, Jr Ms. Marisol Carpintero 38 4. Access to Education, Work and Marriage INTERNATIONAL SYMPOSIUM Prof. Yozo Yokota Towards Holistic Care for People with Hansen’s Disease, Respectful of their Dignity FRIDAY 10 JUNE THURSDAY 9 JUNE ROUND TABLE The Contribution of the Church 10 Message of H.E. Msgr. Zimowski and Other Faith Communities H.E. Msgr. Zygmunt Zimowski 41 1. The : the Results 11 Introduction of the Survey of ‘The Good Samaritan’ Mr. Yohey Sasakawa Foundation on the Activities and the 12 Message of the Right Honourable Projects of the Catholic Church for Beatrice Lorenzin Care of People with Hansen’s disease Rt. Hon. Beatrice Lorenzin Dr. Claudia Di Lorenzi 13 Speech of Mr. Récipon 43 2. The Contribution of Hinduism Mr. Michel Récipon Dr. P.K. Gopal 14 Speech of Mr. Narsappa 45 3. Hansen’s Disease: the Contribution Mr. Vagavathali Narsappa of Buddhist Communities Dr. Phramaha Boonchuay Doojai 16 PROLUSION Care for People with Leprosy: a History of Mercy and Holiness THIRD SESSION His Eminence Cardinal Robert Sarah GOOD PRACTICES AND TESTIMONIES 20 Hansen’s Disease: Epidemiological Data 50 1. The Current Status of Leprosy in India and Future Scenarios and the Role of the Indian Catholic Church Dr. Erwin Cooreman in Reaching out to Socially Excluded People Affected by Leprosy Father Arputham Arulsamy FIRST SESSION MEDICAL-SCIENTIFIC ASPECTS: 56 2. The Pastoral Project for People with Leprosy in the Diocese of Bunia 25 1. The Fight against Leprosy: in the Democratic Republic of the Congo Current Challenges and Strategies Sister Jeanne Cécile Nyamungu Atimnedi Dr. Marcos Virmond 60 3. Testimony about Leprosy 28 2. The Elimination of Leprosy and Father Giorgio Abram, ofm Conv Neglected Diseases as a Problem of Public Health Care 62 Conclusions and Recommendations Dr. Francesco Maraglino Father Michele Aramini 30 3. The Modern Challenge of an Ancient Disease Dr. Ann Aerts DOLENTIUM HOMINUM N. 90-2016 3

On 12 July 2016 the Lord Called unto Himself Archbishop Zygmunt Zimowski

ARCHBISHOP ZYGMUNT ZIMOWSKI

• Born in Kupienin in on • President of the Polish Episco- • Member of the Congregation 7 April 1949 pal Commission for the Doc- for Bishops • Ordained a priest on 27 May trine of the Faith • Knight’s Cross of the Order of 1973 in Tarnów • Member of the Polish Episcopal the Restored Poland • Licence in theology at the Cath- Commission for Ecumenism • Commander with Plaque of the olic University of Lublin • Delegate of the Polish Bishops’ Equestrian Order of the Holy • in theology at the Conference for Pastoral Care Sepulchre of Jerusalem University of Innsbruck in Aus- for Migrants • Commander’s cross with plaque tria • Appointed President of the of the Order of the Restored Po- • Official of the Congregation for Pontifical Council for Health land the Doctrine of the Faith 1 Feb- Care Workers and raised to • Honoris Causa degree in the- ruary 1983 the office of Archbishop on 18 ology of the Christian Theo- • Appointed Bishop of Radom in April 2009 logical Academy of Warsaw 30 Poland on 28 March 2002 • President of the ‘Good Samari- June 2008 • Consecrated a Bishop by Cardi- tan’ Foundation • President of the Ethics Commit- nal Ratzinger on 25 May • Member of the Congregation tee of the St. Lucia Foundation 2002 for the Causes of IRCCS in 4 DOLENTIUM HOMINUM N. 90-2016

TO THE MOST REVEREND GENTLEMAN MSGR. JEAN-MARIE MATE MUSIVI MUPENDAWATU SECRETARY OF THE PONTIFICAL COUNCIL FOR HEALTH CARE WORKERS 00120 VATICAN CITY

I HAVE LEARNT OF THE SAD NEWS OF THE DEATH OF HIS EXCELLENCY THE MOST REVEREND MSGR. ZYGMUNT ZIMOWSKI, THE PRESIDENT OF THE PONTIFICAL COUNCIL, AFTER A LONG AND PAINFUL ILLNESS WHICH HE LIVED IN A SPIRIT OF FAITH AND CHRISTIAN WITNESS. I WISH TO EXPRESS MY SPIRITUAL PARTICIPATION IN THE MOURNING THAT AFFLICTS THE DICASTERY AND, WHILE REMEMBERING HIS GENEROUS MINISTRY EXERCISED FIRST AS A PASTOR IN THE DIOCESE OF RANDOM AND THEN AT THE SERVICE OF THE HOLY FATHER, I RAISE UP FERVID PRAYERS OF TO THE LORD FOR HIS SOUL, ENTRUSTING HIM TO THE MATERNAL INTERCESSION OF THE BLESSED MARY, QUEEN OF POLAND. WITH THESE SENTIMENTS, I INVOKE FOR OUR MUCH LAMENTED FELLOW WORKER THE ETERNAL PRIZE PROMISED TO THE FAITHFUL SERVANTS OF THE GOSPEL AND I WILLINGLY BESTOW ON YOU, THE OFFICIALS AND WORKERS OF THE PONTIFICAL COUNCIL, AND ON THE FAMILY RELATIVES OF THE MUCH LAMENTED PRELATE, MY CONSOLING APOSTOLIC BLESSING.

FRANCISCUS PP.

From the Vatican, 13 July 2016 DOLENTIUM HOMINUM N. 90-2016 5

Personal Memories of H.E. Msgr. Zygmunt Zimowski

FATHER JÁN Dˇ ACˇ OK SJ emn academic meeting of the Fac- of the University of P.J. Šafárik in Prelate Theologian ulty of Theology of the University Košice in Eastern Slovakia where of the Apostolic Penitentiary, of Trnava in Bratislava when he he met the dean of the Faculty and the Holy See gave the keynote magisterial pa- his colleagues, gave a lectio mag- per entitled ‘The Current Trends istralis for the medical doctors, in Pastoral Care for Health-Care health-care workers and students met His Excellency Msgr. Zyg- workers and the Role of Bishops’ of the faculty, and visited the uni- Imunt Zimowski for the first Conference in the Achievement of versity hospital, the centre for time in February 2010 in St. the Culture of Life’; his laudatio; heart disease, and the chapels. Clement’s Basilica in Rome. We and the award of the medal of the Because of other engagements were celebrating the feast day of Pontifical Council of Health Care I was not able to accept his invi- St. Cyril and St. Methodius, the Workers to H.E. Msgr. František tations to accompany him on his patron saints of Europe. After the Tondra, the Bishop of Spiš, the trips to Croatia and the Czech Re- solemn celebration, I asked who President Emeritus of the Bish- public. one of the concelebrants was be- ops’ Conference of Slovakia and I am deeply grateful to Msgr. cause I had never met him. That the first chairman of the sub-com- Zimowski and those who worked person was Zygmunt Zimowski, mittee of bioethics of the Bishops’ with him for being able to rep- the new President of the Pontifical Conference of Slovakia (BCS), on resent the Pontifical Council for Council for Health Care Workers. the occasion of this last’s seventy- Health Care Workers, togeth- After being introduced to him, he fifth birthday, because of his dis- er with Msgr. Dariusz Giers, an invited me to visit him in his of- tinguished contribution to the de- Official of the dicastery, at the fice. Thus was born our coopera- velopment of the culture of life and conference on pastoral care in tion and our friendship which of- the protection of human dignity health organised by the Ecumen- fered numerous opportunities for and human life. Msgr. Zimowski ical Patriarchate of the Orthodox us to get to know each other well. greatly appreciated that occasion Churches in Rhodes, Greece, in In this paper, I will take the liberty and the giving of that award be- October 2011. From my point of of referring to some of those op- cause Msgr. F. Tondra was to die view, I am able to state that gradu- portunities. the following year. After receiv- ally good and promising coopera- On the occasion of my first visit ing the news of his death, Msgr. tion was established between the to the Pontifical Council, he sug- Zimowski repeated: “We did well, two institutions. I was able to get gested that I accompany him on we did well!” His visit was a great to know Msgr. Zimowski better his trip to Vitebsk, in Byelorussia, enrichment and encouragement thanks to two visits to the Holy in May 2010, a trip he was mak- for the priests, religious and lay Land in October 2013 and in par- ing in response to an invitation of faithful who worked in the field of ticular in February 2016 when the H.E. Msgr. Władysław Blin, the health care, a field in which they twenty-fourth World Day of the then bishop of that city. Each one had to address very many prob- Sick was celebrated in Nazareth. of us gave two papers: one for the lems and challenges. The bishops His participation, so much wished students and the lecturers of the of Slovakia appreciated the meet- for, and its success, despite his ill- Faculty of Pedagogy of the state ing with Msgr. Zimowski who left ness, encouraged everyone. University of P.M. Masherov in in them profound and inspiring After his second visit to Slova- Vitebsk, and the other at the inter- impressions. kia, H.E. Msgr. Viliam Judák, the national conference on contempo- In June 2014, during his second Bishop of Nitra, invited him to a rary problems of medical ethics visit to Slovakia, he took part in pilgrimage to a holy place associ- for the medical doctors and re- the international conference held ated with Andrew and Saint searchers of the Faculty of Medi- in Bratislava on contemporary Benedict, the patron saints of that cine of the same university. biomedicine and care for health diocese, in Skalka near to Trenčín, Msgr. Zimowski so much ap- and human dignity. On that occa- for the renewal of the historic ties preciated the activity of health- sion he visited some institutions between the diocese of Nitra and care workers in Slovakia that he dedicated to care for the sick and the diocese of Tarnów in Poland, visited that country twice. I had the suffering and he met health- the diocese of his birth. Msgr. Zi- the honour of being able to accom- care workers of Slovakia and mowski had very much wanted to pany him on those two visits. The representatives of the European go to that place as early as 2015, culminating point of his first visit Federation of Catholic Doctors but his state of health prevented (which took place in June 2011) (FEAMC). During this trip he al- this. When we spoke about this was his participation in the sol- so visited the Faculty of Medicine invitation at the beginning of the 6 DOLENTIUM HOMINUM N. 90-2016

year 2016, he repeated his wish in which had taken place on the pre- ki as a cordial, friendly and gener- emphatic fashion: “we’ll go there, vious day. His letter, addressed to ous man who loved Jesus Christ we’ll go there”. He confirmed H.E. Msgr. Viliam Judák, in which and the Church which he served this in May 2016 as well when he he informed him that he was una- with all of his energies. He not on- was already in Poland, to which ble to take part in the events of the ly proclaimed the gospel example he had travelled before Easter. pilgrimage and told him about the of the Good Samaritan but also The medical doctors, because his appointment of his representative, embodied it during his meetings health had got worse, advised him was dated 1 July 2016, a few days with the sick and with health-care not to return to Rome. I spoke to before he was called to the Lord… workers. With his patience, and in Msgr. Zimowski again on the tel- During those events we remem- a special way during the period ephone on 24 June when he had bered Msgr. Zimowski with great of his worsening illness, he dem- been admitted to hospital again esteem and gratitude. onstrated his deep personal union near to his place of birth in Kupi- Together with H.E. Msgr. Mi- with the suffering and risen Christ enin in the diocese of Tarnów. On lan Lach, the chairman of the then who strengthened him in his per- that occasion, he appointed me sub-committee for bioethics and sonal journey until the end. I am his delegate for the pilgrimage to of the committee for pastoral care profoundly grateful to the Lord Skalka. Later I was unable to talk in health of the Bishops’ Confer- that I knew him, for everything to him because his state of health ence of Slovakia, and Prof. Jozef that, under his guidance, could was deteriorating rapidly… Glasa and Fr. Jozef Mydla, I took be done for the universal Church, I felt greatly moved and hon- part in his funeral as a sign of grat- for Slovakia and for all the other oured to have been appointed his itude for a great personage who countries of the world. I am con- representative at the solemnity of loved Slovakia and its people and vinced that already in the house of St. Andrew and St. Benedict, to appreciated everything that had the Lord he is accompanying, and preside over the celebration of the been done in that country for the will accompany, the efforts of all Eucharist on Sunday 17 July 2016, cause of human dignity, in partic- those who continue, and will con- and at the first pilgrimage of the ular in the field of health care. tinue, in the mission that he out- health-care workers of Slovakia I knew Msgr. Zygmunt Zimows- lined.

Remembering H.E. Msgr. Zimowski

PROF. DOMENICO ARDUINI diately forgotten when he come a father, with his answer already Director of the Department right up to me with that smile of in my pocket. It was often in the of Obstetrics and Gynaecology, his which I would always remem- affirmative, at times involved the University of Rome ber, until our last meeting when doubts, in rare cases it was nega- Tor Vergata – the Holy Family his illness had already weakened tive, but it was always accompa- him but had not been able to elim- nied by an exhaustive explanation inate that smile. about the negative or positive rea- o meet His Excellency Zi- On that first occasion, he took sons for his response. Tmowski was certainly a mo- me right away into his office and When my family and I myself ment that it was difficult to forget. he had me sit down on the small personally had to go through the His capacity to attract people put sofa, with him beside me. I imme- anxiety-inducing journey of ill- every interlocutor at their ease. I diately understood that he was no ness, the first person in whom I remember perfectly, even though ordinary person, and above eve- confided and from whom I sought ten years have passed since that rything else he behaved like an comfort was Zimowski; the first time, the first occasion that I had old and patient friend. From that chapel in which I asked the Lord the honour to be able to speak to moment onwards, I began a slow to point out to me the pathway to him. It was in his office. and constant drawing near to the take was the little chapel of the The question was a rather im- mission of his Pontifical Council, Pontifical Council. Zimowski al- portant one and his experience which was never to leave me. ways comforted me and was for and his capacity to go immedi- Each time that I went to see him all of us a real point of support, ately and rapidly to the heart of a and proposed some idea about a rock to hang on to, to resist the problem could have been of vital work, he listened to me patient- unforgiving torrent of illness. help. I remember that my anxious ly, he corrected me in a kindly When he spoke to he about his wait in that little room was imme- way, and said goodbye to me like Cross, smiling, I reminded him DOLENTIUM HOMINUM N. 90-2016 7

of the words that he spoke to me nate I was to know him and how not believe that everything finish- in similar circumstances when he much he gave to me as an exam- es with death and that one should saw that I was ill. He smiled back ple and as an impress of charity use the remote past tense in Ital- and we held each other in the si- and of faith. ian. I am certain that his teaching lence of understanding. As you will have noticed, I is, and will always remain, with Now, when thinking about have always used verbs in the pre- us, and this is the finest gift that those years when I was near to sent tense because, not only as a Zimowski is giving us. him, I cannot imagine how fortu- Catholic but also as a man, I can-

The Last President H.E. Msgr. Zygmunt Zimowski

MS. MARISOL CARPINTERO Zaire. This of nationali- able, intent on knowing about Director of ties expressed a vision of the uni- the realities and development of ‘Secretariado Diocesano versality of the Church. pastoral activity in our country. para la pastoral de la salud’, As we celebrate the thirty-first I spoke about my admiration and Diocese of Avila, international conference of the veneration for his countryman, Spain Pontifical Council for Health Care John Paul II. He listened to Workers, we know that this dicas- me carefully and agreed with the tery will end its activities on 1 good things that I said about that gift was present in the mys- January 2017, following the wish- Supreme Pontiff. For me that ap- A tery that surrounded the life es of . It will form a pointment was a present of John of John Paul II with the assassi- part of the new Dicastery for Pro- Paul II who promoted within the nation attempt on his life in 1981 moting Integral Human Devel- Church the pastoral task of bring- that took place shortly after the opment, but this does not mean ing light, comfort and hope to all beginning of his pontificate – the that what has been done hitherto people who have to face up to the gift of his life which lasted until will be forgotten about since the trial of illness and suffering. the year 2005. The creation of the Church follows the same Lord in My subsequent meetings with Pontifical Commission for Pas- her various institutions. him took place in Rome on the toral Assistance to Health Care Almost without wanting it, occasion of the international con- Workers (1985), which later be- the thirty-first international con- ferences. He greeted me with af- came the Pontifical Council for ference has been pervaded by a fection and he had already identi- Pastoral Assistance to Health feeling of sadness and remem- fied me as a faithful follower of Care Workers (1988), participat- brance, with the sensation of be- John Paul II. His ability to listen ed in this gift. This was a journey ing an orphan, because on 12 July always struck me. I had the per- that lasted thirty-one years. The last Msgr. Zimowski took the fi- ception that he was a pious bish- greatest beneficiaries of this jour- nal step from life to Life because op and a good pastor who loved ney were the sick and, amongst saw him as being worthy of sick people. I told him about the them, the poorest and the most Him. For this reason, the general way in which we provide pastoral discarded of the societies of the chairman is our Secretary, Msgr. care in the pastoral plan of our di- five continents of the world. Jean-Marie Mupendawatu. The ocese; our projects, our concerns Following its creation, this in- pious meditation and prayer in and our hopes. stitution had three presidents: his memory encourage me to of- Within a short time, it also fell Cardinal Fiorenzo Angelini, an fer you the memories of him that I to him to experience suffering Italian; Cardinal Javier Lozano keep in my heart. and illness, a situation that many Barragán, a Mexican; and Arch- A few months after Pope Ben- of us could not live with him in bishop Zygmunt Zimowski, a edict XVI had appointed him his daily life. But we certainly ac- Pole. They in their turn were able Archbishop-President of the Pon- companied him with our prayers. to rely upon the cooperation of tifical Council for Health Care Everybody prayed for him to be two Secretaries: H.E. Msgr. Jo- Workers (2009), Msgr. Zimows- relieved and comforted by Jesus. sé L. Redrado, a Spaniard, and ki visited Spain on the occasion I should say that the ‘gift’ about Msgr. Jean-Marie Mupendawatu, of the National Meeting of Del- which I spoke at the beginning of from Lubero, in the Democratic egates of Pastoral Care in Health. this paper found its way into the Republic of the Congo, formerly He was a kindly man, approach- life of Msgr. Zimowski and the 8 DOLENTIUM HOMINUM N. 90-2016

way in which he lived his illness, which helps us to accept and of- is also, during moments of mis- following the example of his fel- fer up our suffering. I believe that fortune, subjected to a great trial. low countryman, St. John Paul II. this is how our President Msgr. Faith, however, is not only useful He said this to me personally in Zimowski lived that moment and – it is even indispensable. Suf- his office exactly a year ago when today we feel grateful for his wit- fering experienced in commun- in November 2015 we celebrated ness, his strength and his love for ion with the Saviour is not only the thirtieth international confer- Jesus Christ; this was truly an ex- easier to bear but also, in real- ence, the last that he was to lead. perience of faith lived in the best ity, it can be – paradoxically – a “I have been very ill, but I want to of settings – the Holy Land. He reason for especial joy. There are be strong as he was strong”. This made real the words of St. John two reasons for this: firstly, when strength and vitality of his soul Paul II: ‘do good with suffering I suffer I can rely upon the special were very evident to those who and do good to those who suffer’. nearness of the Christ who identi- had the grace to live the World He truly did a great deal of good fies above all else with those who Day of the Sick in the Holy Land to us. bear the cross of illness; second- together with him in February It remains to me to express a ly, my suffering becomes an op- 2016. He was the Delegate and special reason for gratitude. The portunity for a sort of mission, of Special Envoy of the Holy Fa- section for pastoral care in health evangelization. Through my wit- ther. We could observe the frail- in our diocese of Avila published ness of interaction with suffer- ty of his body and the greatness the Messages of John Paul II and ing, I can, after a certain fashion, of his soul. The way that he dealt Benedict XVI published on the make it happen that other people, with people; the spirit with which occasion of the World Day of the seeing the extraordinary strength he overcame difficulties; his wish Sick: ‘Messages Starting from that springs from my faith, are to be present and to take part in Love for Suffering People’. I attracted and want to strength- all the events of the programme; asked Msgr. Zygmunt Zimowski en their relationship with God, the way in which he experienced to write the conclusion to the sec- the source of spiritual strength. the liturgical celebrations; his pi- ond part which was dedicated to In this way, suffering becomes a ety and concentration in receiving the Messages of Pope Benedict kind of challenge, but also an op- the sacrament of Holy Anointing; XVI. Shortly after I made my portunity to take part even more his action of welcoming the sick; request, however, his situation fully in the missionary activity of and his humble approach when he got worse and thus I had doubts the Church’. allowed himself to be helped by about whether he would be able I thank the Lord for the good priests, were all exemplary. to make this contribution because that the Pontifical Council has I remember, in particular, the everything suggested that this done during its thirty-one year homily that he gave during the would not be possible. But to our journey; the good done by its celebration of the Eucharist in the great joy Msgr, Zimowski made a Presidents, the last one of whom, Basilica of the Holy Sepulchre: great effort and gave us the pre- Msgr. Zimowski, is present in a very moved, he recalled the visit sent of his conclusion. Today I special way at this thirty-first in- of Pope John Paul II to that holy see it as his spiritual testament. ternational conference, by its Sec- place. I remember the effort that With gratitude I reproduce the retaries and Under-Secretaries, by he made to climb the stairs that go following section which brings the workers of this vineyard of up to where the body of Christ was out the heights of his spirit: ‘The the Lord, workers and volunteers. buried. Msgr. Zimowski tried to subject of suffering is a difficult All of them have helped us to dis- imitate the courage of Pope John subject, both to live and to ex- cover in a small diocese the great- Paul II. There, more than in any plain. More than a challenge it is ness and the universality of the other place, we could feel in our mystery that we address very day Church; they have helped us feel hearts that suffering, illness and personally or indirectly because that we are not alone, that pasto- death do not have the last word a friend of ours or a family rel- ral activity is unique, inherited because the Resurrection of Christ ative is going through a moment and learnt from Jesus who during is the final triumph. The Basilica of physical or moral difficulty… his life privileged the sick, cur- of the Holy Sepulchre became for Suffering should always be faced ing, healing and saving everyone. us a symbol of light and of grace up to in the light of faith, which May God be blessed! DOLENTIUM HOMINUM N. 90-2016 9

International Symposium

Towards Holistic Care for People with Hansen’s Disease, Respectful of their Dignity Organised by The Pontifical Council for Health Care Workers The Good Samaritan Foundation The Nippon Foundation

In Cooperation with The Raoul Follereau Foundation The Sovereign Order of Malta The Sasakawa Memorial Health Foundation

9-10 June 2016 ‘Padre Agostino Trapè’ Auditorium The Patristic Institute Augustinianum Vatican City 10 DOLENTIUM HOMINUM N. 90-2016

THURSDAY 9 JUNE

Message of H.E. Msgr. Zimowski

H.E. MSGR. from the subsequent papers, this I made an appeal for a shared ef- ZYGMUNT ZIMOWSKI is a very important appointment fort to expand activities involving President of the because Hansen’s disease, de- information and prevention and Pontifical Council spite the notable decrease in cas- above all to foster, as a gesture Towards Holistic Care for People with Hansen’s for Health Care Workers, es of contagion following the ad- of true ‘compassion’, the social Disease, Respectful of their Dignity the Holy See vanced development of therapies and occupational reintegration of for it, continues to be a challenge those people who have been cured that has to be addressed at three of this disease and who, despite warmly greet all those taking levels. They are a reduction in the bearing signs of it impressed on Ipart in this international meet- incidence of this disease; helping their bodies, have conserved in- ing entitled ‘Towards Holistic people who are afflicted by it and tact their dignity as persons. Care for People with Hansen’s their families; and reintegrating When announcing the Extraor- Disease, Respectful of their Dig- people who have been cured of it dinary Jubilee of Mercy Pope nity’ which the Pontifical Coun- into society. In addition, leprosy Francis expressed the hope ‘that cil for Health Care Workers (for has a deep connection – starting this Jubilee year celebrating the Health Pastoral Care) through its with Holy Scripture – with Mer- mercy of God will… eliminate own Good Samaritan Founda- cy, and providing a contribution every form of closed-mindedness tions has organised together with to the fight against this ancient and disrespect, and drive out eve- the Nippon Foundation, to whom, and still today frightening malady ry form of violence and discrimi- indeed, I express my thanks. belongs in a very appropriate way nation’ (Bull of Indiction for the Similar thanks go to the Raoul to this Jubilee Year of Mercy. Extraordinary Jubilee of Mer- Follereau Foundation, the Sover- In preparing for these delib- cy, Misericordiae Vultus, n. 23). eign Order of Malta, and the Sa- erations, we can draw inspira- Adopting the words of the Pope I sakawa Memorial Health Foun- tion from many exemplary peo- hope that there will ‘be ever more dation who have cooperated in ple and entrust our activity to abundant goodness in us. Let us making this meeting a reality. saints who marked themselves be infected by goodness and let us To all those present and all out by their encounter with peo- spread goodness’ (Pope Francis, those who are involved every day ple with leprosy or in caring for Prayer of the Angelus, 15 Febru- in the fight against Hansen’s dis- them, to the point of sacrific- ary 2015). I believe that too many ease and against all ‘even more ing their lives in their mission of our sick brothers and sisters contagious diseases’, as Raul for them. We may remember St. still await a gesture of tenderness, Follereau repeatedly said, that in- , St. Damian de of sharing, and believe that this jure the dignity of human beings, Veuster, St. Marianna Cope, the will help to remove all social stig- I express my great and keenly-felt Blessed Jan Beyzym, the Vener- mas. In accepting the invitation gratitude and also my admiration. able Marcello Candia, the Serv- of the Holy Father, the Pontifical Unable to take part in this ini- ants of God Raoul Follereau and Council for Health Care Workers tiative on ‘doctors’ orders’ be- his wife Madelaine Boudou, and has wanted to celebrate this inter- cause they want me to conserve the Blessed of Cal- national meeting as an immedi- my strength, I greet with especial cutta who will be canonised by ate preparation for the Jubilee of affection all people with Hansen’s Pope Francis on 4 September of the Sick and the Disabled which disease or afflicted in some way this year as a model of mercy. will be celebrated next Saturday by it. I feel particularly close to Our meeting is to be placed in and Sunday, and which will have all of them and my prayer is that this context and it wants to high- an especial relevance because of suffering will never manage to be light that Hansen’s disease can- the Holy celebrated by the stronger than hope and that we can not be a pathology of which we Holy Father Pope Francis. I hope offer up all our tribulations to the should be afraid and that it cannot for all of you that this experience Lord, to those people who have be forgotten about, in the same of the Church immersed in mer- most need of comfort and care. way as the people who are afflict- cy will make all sick and disa- I hope that this symposium will ed by it cannot be forgotten about. bled people, as well as their fam- be successful, indeed very suc- In my Message written on the oc- ily relatives, health-care workers cessful. I personally took part in casion of the sixty-third World and those who work hard in the its organisation. As will emerge Leprosy Day of 31 January 2016 world of voluntary work, increas- DOLENTIUM HOMINUM N. 90-2016 11

ingly joyous and effective wit- pointment, therefore, should be a I wish you fruitful work and nesses to mercy, in particular stimulus to act because, as Rauol I look forward to seeing you all in relation to people marked by Follereau said, ‘to love without soon! I accompany you with my Hansen’s disease. This jubilee ap- acting means nothing!’ blessing!

Introduction

MR. YOHEY SASAKAWA Wherever I travel, many who clined. Yet, while there was an Chairman of have been cured of leprosy have improvement on the medical side, the Nippon Foundation, told me how grateful they are for the social problem of discrimina- Japan the devoted care of the Church. tion remained unchanged. Many The Nippon Foundation of people continued to suffer from which I am the chairman, and its the discrimination and stigma as- am truly grateful to the Pon- affiliated organisation, the Sa- sociated with leprosy. Itifical Council for Health Care sakawa Memorial Health Foun- In other words, although they Workers for graciously co-organ- dation, have been committed had been cured of leprosy, they ising this symposium, and I would to eliminating leprosy since the still continued to be stigmatised like to thank the Good Samaritan 1960s, in addition to diverse hu- as former ‘leprosy patients’. They Foundation, the Foundation Raoul manitarian programmes in many were discriminated against, un- Follereau and the Sovereign Order parts of the world. able to return home or go back to of Malta for their cooperation. In 1983, my late father, Ryoichi work. They had no other choice I believe that we cannot talk Sasakawa, was invited to meet but to live in the leprosaria or about leprosy without listening and talk with His Holiness Pope leprosy colonies where they had to those who have experienced John Paul II in his office, and I ac- lived as patients. it. But there have not been many companied him on that occasion. This is a problem that cannot who have heard their voices di- During the audience, His Holi- be solved by medical treatment. rectly. Today, I would like to ex- ness wrapped his arms around my It is a problem of awareness. press my special appreciation to father and expressed deep grati- The problem of public awareness those who have come from so far tude for his work to eliminate lep- stems from deep-rooted misper- to share their experiences with us. rosy and he encouraged him to ceptions of leprosy that lead to Let me begin by acknowledg- continue. discrimination. In many cases, ing the role that the Roman Cath- In the 1990s we at the Nip- leprosy is still misunderstood, and olic Church has played in caring pon Foundation decided to make is seen as a hereditary disease or for those who suffer from leprosy. available the effective treatment as a curse or punishment of God. Many in the Church have devoted for leprosy that had been devel- To rectify these misperceptions, their lives to helping leprosy pa- oped in the 1980s, the multidrug the Nippon Foundation engages in tients. therapy, free of charge, globally. activities that promote a correct Among them have been Saint With the cooperation of the WHO understanding of leprosy. For ex- Damien whose care for leprosy and many others, we were able to ample, every year since 2006 we patients in Hawaii in the nine- achieve a dramatic decline in the have continued to launch a mes- teenth century was very much number of patients. sage that we call the ‘Global Ap- recognised, or Mother Teresa, a I was granted a second audi- peal to End Stigma and Discrimi- Nobel Peace Prize laureate for her ence with His Holiness Pope John nation against People Affected by dedicated services to the poorest Paul II in 2003. At that time I was Leprosy’ to coincide with World of the poor and for people with delighted to be able to report that Leprosy Day in January. This is leprosy and other diseases. I my- I had travelled and could confirm one of our key advocacy efforts. self was fortunate to meet Mother that the medicine was always in This annual appeal is made in co- Teresa in India. When I visited a stock even in the remotest dis- operation with leaders who repre- home for leprosy patients run by tricts of all the endemic countries, sent different sectors of society, the nuns of the Missionaries of and as a result of this successful such as medicine, business, aca- Chastity, she showed me around distribution of the medicine the demia, to name a few, in order to herself. My visit and my experi- number of patients had undergone try to reach out to a broader public. ence of joining her in prayer for a significant decline. I would like to acknowledge, the patients is a memory that I Thanks to the medicine, the and once again express thanks shall never forget. number of leprosy patients de- for, the support that we received 12 DOLENTIUM HOMINUM N. 90-2016

from the Pontifical Council for ple. Your words teach us compas- those affected by leprosy. By Health Care Workers at the time sion, give us courage, heal suffer- working together, we can enable of Global Appeal of 2009. We ing, and bring us together. Last them to recover their dignity. sent out a message, together with year, His Holiness Pope Fran- In closing, let me share the the world’s religious leaders, ‘to cis graciously received a delega- words of a friend who was cured eliminate discrimination against tion of people affected by lepro- of leprosy. He was afflicted by leprosy and let the healing begin’. sy from at the Vatican and leprosy when he was a young These activities seek to correct they told me how meaningful and boy. Since then he had lived in a misunderstanding and to encour- rewarding it was for them. leprosarium for over seven dec- age the general public to learn Today, this symposium is at- ades. Now he is 89 years-old and more about the disease. I believe tended by representatives of the active in sharing his stories and this is one of the steps towards Roman Catholic Church as well experiences. He often tells me: creating a world without discrimi- as of other faiths, whom the Holy “Although I have suffered dis- nation and stigma associated with See has cordially welcomed. We crimination, I choose to forgive leprosy. have come together to discuss ho- those who have discriminated There is another awareness listic care and to share awareness against me, and in doing so, my that must be addressed. This is of the need to eliminate social dis- life has been enriched”. Hearing the self-awareness of people who crimination against leprosy. his words, I was struck by the have themselves been affected by The ladies and gentlemen who strength and tolerance that human leprosy. I realised that many of have experienced what it is to be beings are capable of. He is one them also had misperceptions of afflicted by leprosy are also here of many who have courageous- the disease. They had lived with with us today. They are coura- ly stood up to speak out against discrimination so long that they geous people who have stood up discrimination and change these had even given up all hope of re- to bring to the attention of the conditions. turning to society. They chose to entire world the situation that all The voices of those affected by live isolated from society because people affected by leprosy are leprosy resonate powerfully for they feared further discrimina- now going through. They are the they have experienced discrimi- tion, never realising that they, too, dynamic leaders who are actively nation first-hand and suffered its have their rights as human beings. guiding others to follow. pain. By listening closely to their Religious leaders touch the By joining forces, we can more voices, we can learn what should hearts and minds of so many peo- effectively ease the suffering of be done.

Message of the Right Honourable Beatrice Lorenzin

RT. HON. ings to all those present. Unfortu- that the Church has towards the BEATRICE LORENZIN nately, institutional engagements sick. This is particularly true of Minister of Health, that cannot be postponed prevent the Pontifical Council for Health me from take part. Care Workers which wanted to I am certain that the meeting celebrate the Jubilee of the Sick will constitute a fruitful opportu- and the Disabled within the con- To H.E. Msgr. Zigmunt Zimowski nity to call people’s attention to a text of the Jubilee of Mercy called President of the Pontifical disease that is neglected, namely by Pope Francis in the current Council for Health Care Workers leprosy, but one which still caus- Holy Year. es a great deal of suffering to pa- I am certain that your event tients and their families. I am also will have the success that it de- thank you for your courteous certain that this meeting will gen- serves, creating the right support Iinvitation to take part tomor- erate general awareness about this in spreading correct information row, 9 June, in the inauguration disease and its medical, mental about this disease as well as a of the international symposium and social consequences. message of tolerance and inclu- ‘Towards Holistic Care for Peo- The role that the Church plays sion. Therefore, in wishing you ple with Hansen’s Disease that in addressing leprosy, and dis- fruitful deliberations, I renew my Respects their Dignity’. I truly crimination in relation to it, is an thanks to you for your invitation would have liked to have been expression of the great commit- and I send my most cordial greet- able to bring my personal greet- ment and profound sensitivity ings to all those present. DOLENTIUM HOMINUM N. 90-2016 13

Speech of Mr. Récipon

MR. MICHEL RÉCIPON made by the Sisters of Our Lady ployment in France; help for the President of the Raoul Follereau of the Apostles. From his first en- victims of the conflict in the Mid- Foundation, counter with a leper in 1936 un- dle East; help for children; and France til his death in 1977, for his leper help for those with leprosy. children, as he loved to call them, It has been in the context of he went round the world thirty- the fight against poverty that we our Eminences, Your Excel- three times offering service to have developed our support for Ylencies, Reverend Monsig- them. Everywhere he was accom- integration through rural employ- nors, Reverend Sisters, Reverend panied by his wife, Madeleine. On ment in France. In a context of Fathers, Ladies and Gentlemen, it behalf of his children he appealed lasting unemployment, situations is a great honour for me and for to the ‘Great and Powerful’ of the of great precariousness have been the Raoul Follereau Foundation, of world, Presidents of the United increasingly numerous. Carrying which I am the president, to have States of America and of the So- on the Hour of the Poor that was been asked to cooperate in the or- viet Union, the Secretary General launched by Raoul Follereau in ganisation of this symposium and of the United Nations, and young 1942, we have accompanied al- to speak to you today. I would like people throughout the world. most five hundred people in re- to thank the Pontifical Council for Above all else, he wanted people acquiring their freedom and dig- Health Care Workers, the ‘Good afflicted by leprosy, those people nity through work. As regards the Samaritan’ Foundation, and the who had been excluded from so- Middle East, our presence devel- Nippon Foundation for this ini- ciety since the dawn of time, to be oped to begin with in the Lebanon tiative which provides us with an once again welcomed into those through a large number of schools opportunity to remember that still societies that had rejected them. that were supported by our Foun- today 200,000 people contract lep- This wish took practical form in dation. But with the worsening of rosy every year. This is a scourge the kiss that he gave to people the situation in the Middle East that the Raoul Follereau has fought with leprosy: he embraced them we could not be indifferent to since its own beginnings, follow- to restore human dignity to them, the suffering of uprooted people ing its founder Raoul Follereau, like St. Francis of Assisi before who were forced to abandon their the Wanderer of Charity. him, like St. Damian of Molokai, homes in a condition of absolute That engaged Christian was and like Pope Francis in Sardin- poverty. above all else an intellectual, a ia. This wish was also expressed Our third cause – that of chil- poet and an orator. The first part in the first World Leprosy Day dren – forms a part of a very spe- of his life was therefore an intel- which was celebrated on the last cial link that existed between lectual struggle in the footsteps Sunday of January 1954. A day Raoul Follereau and young peo- of Father de Foucauld and the of celebrations and joy, it still ple. He addressed many appeals religious who had been expelled today brings together sick and to young people and they always from France at the beginning of handicapped people. In countries answered ‘present’. Since igno- the last century. His first public spared this scourge, it now repre- rance is one of the scourges of our lecture, which he gave at the age sents for the sixty-third time a day world, and one of the leprosies of fifteen, already pointed out the of solidarity. condemned by Raoul Follereau, direction that his life was to take. This today is the legacy of the we have tirelessly followed in his In this lecture, which was entitled Foundation of which I am the footsteps. ‘God is Love’, he was already ob- president. We want to continue We thus come to our fourth serving that ‘living means helping with this legacy because it nour- cause – that of helping people others to live’. The Second World ishes our future and our determi- with leprosy. This is something War was a time of conversion for nation. We have a modern mes- that today is of especial interest to him: after being an intellectual, sage that was bequeathed to us us. Raoul Follereau and the Foun- his battle now took shape. He no by Raoul Follereau; we must be- dation have taken part in all the longer defended ideas; he defend- queath it in our turn because our relevant battles and in all of the ed men, above all those afflicted world needs this message. advances of a medical, legal or with leprosy. He made his life in- This commitment at the side of human character. Thanks to the to a struggle to restore dignity to the excluded of our time, of those experience and the advice of its man; a struggle for charity. who are afflicted by ‘leprosy and medical and scientific committee, There thus began the second the other leprosies of ignorance the Foundation helped to devel- part of his life which commenced and poverty’, has brought us to op the first effective treatment for with fund gathering for the build- Africa, to Asia and to Europe with leprosy, poly-chemotherapy, and ing of the first village for lepro- over three hundred projects. This to distribute it to all people with sy patients, Adzopé, in the Ivory is a commitment that has four the disease, and has implemented Coast, in response to a request causes: integration through em- national programmes which our 14 DOLENTIUM HOMINUM N. 90-2016

medical consultant Dr. Johnson ment of the autonomy of patients on the ground, who are often re- knows about extensively, thereby who are cured and their reintegra- ligious Congregations, we have treating since the outset fourteen tion into society, something that constructed a more just world. million patients. What fecundity Dr. Chauty in Pobé, Benin, and More just because patients can this has been for Madeleine and Sister Dolores, who is present at now obtain treatment and redis- Raoul Follereau: a couple that this symposium, have been able cover their social lives; more just could not have children! to put into practice. because people in the world open I will not dwell upon the ad- Raoul Follereau had the insight their hearts and give their time or vances of medicine that the Foun- that this disease could not be de- money so that we can accomplish dation has fostered since then – feated without a coordinated ef- our mission. But we know that the others will do this better than me. fort. For this reason he worked struggle is not yet over and we re- I will confine myself to citing the to create the ELEP (the European main mobilised. sequencing of the leprosy genome Federation of Anti-Leprosy Asso- While His Holiness Pope Fran- and the genome of Buruli ulcer ciations) which in the year 1975 cis this year has invited us to ex- achieved by Professor Cole, the became the ILEP (the Internation- plore Mercy, in particular through current chairman of our medical al Federation of Anti-Leprosy As- the practice of acts of charity, and scientific committee, as well sociations). In making the vari- I would like here to recall some as the implementation in Mali of ous actors of civil society work words of our founder. “But do not tests for a new potential treatment together to distribute countries believe, above all and first of all, for this disease. In simple terms, amongst them so as to avoid the that giving some of our surplus, at the heart of our activity, there is duplication of efforts, enabling even if it is a small sacrifice, dis- always the wish to raise man up, thereby them to share successes penses us from the duty of lov- to restore to him the place that is and disappointments, the ILEP ing’. He wanted to warn us about his in society: a place that far too has been without doubt a decisive the possible inclination to appro- often, unfortunately, is taken from factor in pushing back leprosy priate the poor, providing them him by these diseases. We thus throughout the world. This year with charity almost without think- seek to go beyond the elimina- is its fiftieth birthday and during ing – automatically, only for our tion of suffering or malady. This this year we want to emphasise consciences. Almsgiving without overall response involves access the effectiveness of this institu- the heart is counter-witness and to hygiene, to health in general, tion, which is one of a kind, in an approach that is against char- but also to instruction, to forma- the fight against this disease, and ity itself. tion and to an improvement in I greet its president who is with us Raoul Follereau also said that living conditions. This has led us here today. ‘Charity is not money. It is an to fight against the spread of ne- Together with the members of act of love. Money is a means – glected tropical diseases such as the ILEP, the Order of Malta, the amongst many others – to bear Buruli ulcer. All of this belongs to World Health Organisation and witness to this love. It is an instru- a process involving the develop- naturally with all our partners ment and nothing else’.

Speech of Mr. Narsappa

MR. VAGAVATHALI discrimination on a daily basis. I conceptions about the disease. NARSAPPA thank you in the name of the As- Rejected by society, they live as President, sociation of People Affected by outcasts in leprosy settlements, Association of People Leprosy (APAL) and the many colonies, Ashrams, sanatoria or Affected by Leprosy, thousands of leprosy-affected rehabilitation homes. India people across our land. I come from a remote village in As you will know, over half the Karnataka, South India and I de- number of new cases of leprosy veloped leprosy when I was nine. amaskar! I thank the Pontifi- reported worldwide occur in In- It was a huge crisis for my family Ncal Council for Health Care dia. In many places you will still and the local community. The vil- Workers and the Nippon Founda- find leprosy-affected persons seg- lage elders declared that I could tion for arranging this symposium regated from their families and not remain in the village. My in support of a dignified life for the community. This is because family was ordered to send me leprosy-affected people who face of lack of knowledge and mis- away. I became an outcast. My fa- DOLENTIUM HOMINUM N. 90-2016 15

ther took me to a leprosy hospital work for the rights of people af- leprosy. Politicians began to take in Andhra Pradesh and left me. I fected by leprosy. notice. felt entirely alone during the two I travelled across my State and Now I am president of the As- years of treatment. In the process, began to understand the needs of sociation of People Affected by I lost my fingers. people living in leprosy colonies Leprosy – APAL– which covers After I was discharged, I went – for education, sustainable live- 800 leprosy colonies in India and home. But my family would not lihoods and basic infrastructure. unites affected people in different take me back. Rejected by my Some were denied ownership of parts of the country. We work for family, I realised that my true land. Some children were refused socio-economic , family was other people affected admission to schools. They are promote respect and dignity, and by leprosy. I went to live in a re- not aware of government schemes educate our community about habilitation home where I also did and benefits. I recognised that government schemes and bene- my schooling. In order to take my people faced discrimination but fits. We have much work to do. exams, I had to go to the govern- could not get their voices heard. I am honoured to be here at the ment school. They made me sit I decided to do something to Vatican representing people af- outside in the hot sun. I felt the change this situation – so I started fected by leprosy in India. We heat and I felt the discrimination. the Society of Leprosy Affected humbly look to His Holiness the Later, my life changed for the Persons (SLAP) involving more Pope for his blessings and sup- better. I was educated and trained than 20,000 people in more than port in helping to end the stigma by the home as a medical assis- 90 leprosy colonies in my State, and discrimination that people af- tant. I met Ms.Nirmala who came Andhra Pradesh, with the support fected by leprosy and their fam- to the home for treatment. We got of many friends among leprosy- ily members face, so that we may married. My wife and two daugh- affected people. It was the first live in this world with dignity. ters have since given me great platform in the State to fight for Thank you all for your under- support and inspiration in my the rights of people affected by standing and support. 16 DOLENTIUM HOMINUM N. 90-2016

PROLUSION Care for People with Leprosy: a History of Mercy and Holiness

HIS EMINENCE CARDINAL classic leprosy (the bacillus of tion outside the camp’ (Leviticus ROBERT SARAH which was discovered by Hansen 13:46). This verse is further ex- Prefect of the Congregation in 1871), for the Bible it covered a plained in the commandment giv- for Divine Worship broad series of afflictions and dis- en to : ‘Command the peo- and the Discipline eases of the skin: mycosis, psoria- ple of Israel that they put out of the of the Sacraments, sis, leukoderma, leukoplakia, der- camp every leper…you shall put the Holy See matosis, eczema, etc.1 In essential out both male and female, putting terms, these were maladies that them outside the camp, that they were highlighted on the skin and may not defile their camp, in the wish to begin this paper of mine became a sort of visible brand not midst of which I dwell’ (Numbers Iby referring to an example in only of the malady itself but al- 5:2). As one can well see, leprosy history that took place in France in so of the shame connected with it.2 involved exclusion from the com- the year 1321 and which indicates Indeed, for the Bible leprosy was munity. A priest had the task of the climate that has often been cre- a divine punishment that punished judging whether it was present and ated around leprosy. Strange ru- people for sins that had been com- it was constantly associated with mours began to circulate in that mitted. The Egyptians were struck the idea of a divine punishment for year. Hundreds of lepers who lived by it (Ex 9:9ff); Mary, the sister of sins that had been committed. In in public refuges had organised a Moses, became a leper following these texts, furthermore, the idea plot: they were going to poison her sin of (Nm 12:1- is also sustained that to promote wells, fountains and rivers in or- 10); and the same happened to the worship of YHWH the physi- der to infect the people of France Uzziah (2 Chr 26:19-23). cal integrity of a person was indis- with leprosy and thus seize power invoked leprosy on the house of pensable and this was something and take over the kingdom. The Joab as a punishment for the mur- that lepers did not possess. As a hysteria generated by the discov- der that he had committed (2Sam consequence, they were forced to ery of this imaginary plot led Phil- 3:29). In Deuteronomy 28:25-27, live outside the city, to wear rags, lip V (1317-22) to promulgate an Israel itself was threatened by this and to have long hair and unkempt edict in Poitiers against lepers. A disease given that leprosy was list- beards.3 Even objects, homes and series of trials were immediately ed amongst the maledictions visit- clothes were held to be capable of begun. Lepers were interrogated ed on the People of God if it did infection and thus protective leg- and tortured and those presumed not obey His voice. Leprosy was islation was required.4 The priest to be guilty were immediately sent thus the quintessential scourge that was the person who had to ascer- to the stake. These included men God inflicted (vaga’) on sinners. tain the presence of the disease. and women. The of It was, therefore, to begin with, a If he thought that the person had the lepers ended with an authentic sign of sin. leprosy, the stage of isolation was massacre. In addition to the work- For the Torah, in addition, lep- immediately begun whereas when ings of the judicial system, some rosy is also a contagious impurity there was a doubt he or she was people, overcome by terror, inde- and thus a leper should be exclud- placed in quarantine for a week or pendently engaged in the summary ed from the community until his two before establishing whether he execution of entire families. or her cure and ritual purification. or she had to be isolated and puri- This episode was symptomatic This last requires a sacrifice for the fied or otherwise.5 The purification of a climate that has always sur- sin that has been committed. This envisaged a rite with two aspects: rounded – as far back as Bibli- is because it was thought that there purification against the forces of cal times – the disease of lepro- was a very close connection be- evil (the disease was seen as a de- sy, a bacteriological malady that tween leprosy and personal guilt. mon that had to be exorcised) and takes various forms and has dif- The laws of the Torah on leprosy sacrificial rites.6 ferent consequences (ulcerations, are to be found in Leviticus 13-14. As can be seen, the leper, in the degeneration of nerves, a de- The Lord when addressing Moses addition to the suffering caused crease in sensitivity and in move- and Aaron explains the manifes- by the disease, also suffered pain ment of the muscles, paralysis). It tations of leprosy and the way in and shame because of the guilt should be remembered, first of all, which a priest has to judge whether involved – his or her leprosy de- that whereas for us the term ‘lep- the disease exists. The text ends in clared publicly that he or she was rosy’ (in Hebrew ‘zara’at’ and in the following way: ‘he is unclean; a sinner and had been struck down ancient Greek ‘lepra’) refers to he shall dwell alone in a habita- by God. He or she was not only a DOLENTIUM HOMINUM N. 90-2016 17

victim of the disease – he or she clear of them because they were ways stop at a distance and say in was also guilty! Leviticus declares highly infectious and sinners. a loud voice “Jesus, teacher, have that ‘The leper who has the disease However in the Old Testament pity on us!”. They stop at a dis- shall wear torn clothes and let the there is a text which should make tance because according to the law hair of his head hang loose, and he us reflect a great deal. The suf- they are impure and therefore they shall cover his upper lip and cry, fering servant is afflicted by God have to live on their own, outside ‘Unclean, unclean’’ (Lev 13:45). and people draw away from him the camp, without being able to en- A leper generated fear – he or she as though he were a leper. How- ter into contact with other people. could infect other people and was ever innocent he may be, he bears They stop at a distance and shout thus abandoned by his or her fam- the sins of men who will be healed out so as not to contaminate any- ily, avoided by other people and because of his wounds (Is 53:3- one; they feel that they are impure, marginalised. He or she was ex- 12; cf. Ps 73:14). With this text guilty and sinners. The only acts of pelled from society and forced to we come to Jesus who, when he kindness that they receive is from live in places distant from inhabit- heals lepers (Mt 8:1-4 par.; Lk good men who leave them food at ed centres. Normally a leper lived 17:11-19), is shown to be the one a good distance. But the lepers of in caves or huts and feeding him or who triumphs over the scourge to the gospel are also a little special. her was entrusted to the charity of the utmost; he heals these men and They shout out: “Jesus, teacher, relatives or merciful people who takes their illnesses upon himself. have pity on us!” Whereas the first brought food and clothes to those (Mt 8:17). In purifying lepers and thing they should have shouted out places, always remaining, howev- reintegrating them into the com- according to Leviticus 13:45 is er, at a good distance from those munity, Jesus abolishes the separa- “Unclean! Unclean! (that is to say who had been infected. Relation- tion of the pure from the impure. Impure! Impure!), and this is per- ships with a leper were prohibit- The offerings laid down by the law haps a sign that they already had a ed and he or she was afflicted in are still prescribed and this is done certain knowledge of Jesus. They all relational areas. Expelled from in order to provide testimony: the knew that he was an epistatês (a his or her family, every contact priests in this way will observe his man who watches over sheep and with him or her was taboo. Dis- respect for the law, and his mirac- takes care of them.8 This is a term tanced from society, from work, ulous power, at one and the same peculiar to the Gospel of Luke that from participation in the life of time. But in reality Jesus is the new is always used in the vocative to the village and communal activi- temple and the new priest. This is ask for care). ties, a leper was adjudged a sinner why the Samaritan leper who is In the passage of Luke 5:12-16, and held to be guilty, and excluded healed by Jesus in Luke 17 does as well, the leper, when coming to from the cultural life of the people. not go to the priests of the temple the city, seems to be disobeying the To sum up, because for the Bible but goes back to Jesus to thank him ritual law and to be plucking up life is relationships, a leper, whose because by now he recognises that courage. And Jesus responds to his relationships were compromised he is the true Temple and the true presence by touching him, that is or prohibited, was one of the liv- priest. This is what the nine Jewish to say by entering into contact with ing dead. He or she, the Book of lepers healed by Jesus do not do. his impurity and healing him – this Numbers declares, was like one Their failure to go back and thank is an action that indicates Christ’s whose father spat in his face (Num he who had healed them becomes care and concern, goodness and 12:14). In definitive terms, for the a tragic prophecy of what would power.9 Mt 8:1-4 and Mk 1:40-45 Bible leprosy constituted the ut- happen a little time later when Is- present two episodes that involve most social and personal disquali- rael does not recognise its Messi- the healing of lepers where it is fication. ah; indeed, will reject him in Jeru- once again evident that Christ en- To bring matters up to the pre- salem, having thereafter to listen ters into contact with their impurity sent day, we may think of cases to foreigners proclaiming his mes- without any fear (in Mark, indeed, of people who are HIV-positive. sianic salvation. the leper asks to be declared to be Perhaps AIDS constitutes a good The healing of lepers, together pure by Jesus, a decision that is the contemporary and pregnant paral- with the other healings, is there- task of a priest – a sign that by now lel with the situation of lepers in fore a sign that Jesus is really ‘he that leper recognises Jesus as being antiquity. In both cases the belief who has to come’. Indeed, such the true priest). However, the Lord is that a terrible disease is caused healing is classified and offered as ask them to go to the temple, that is by a sin. A regards those who had a messianic sign of Jesus for the to say to respect the cultural laws AIDS, in the majority of cases it disciples of (Mt envisaged in cases of healing.10 was a sign that they had had a dis- 11:5 and Lk 7:22). The same takes Jesus is therefore he who ‘saves ordered life and at least at the be- place in other accounts of heal- from illness and reintegrates peo- ginning of this terrible epidemic ings (Mt 8:1-4; Mk 1:40-45; Lk ple into the human consortium. In people were wary about coming 5:12-16; L 17:11-19)7 where Je- him it is possible to rediscover the into contact with individuals who sus is portrayed as the Holy One of fullness of human wholeness’.11 It were HIV-positive. As ignorance God who breaks the cultural mould is interesting to observe how Jesus about the disease diminished, and reintegrates lepers into the hu- in his relationships with lepers is things, however, improved. There man community with love. In the always seized by a movement of was the same approach to lepers as various accounts of healing that great compassion: he allows him- to AIDS patients: one had to keep make up the gospels, the lepers al- self to be wounded by the suffering 18 DOLENTIUM HOMINUM N. 90-2016

of the sick person and enters ful- ‘Nos putavimus eum quasi lepro- ing him on the hand. And after re- ly into that person’s situation. He sum’ (‘We consider him on a par ceiving from him a kiss of peace, touches the leper and in this way with a leper’). he mounted his horse and contin- he not only runs the risk of being As one can see, leprosy has had ued on his way. From that day on- infected but he himself becomes a strong impact on social reali- wards, he began to separate him- contaminated – contracting at the ty and has generated a very pow- self from his own selfishness, to same time ritual impurity, that im- erful approach at the level of the the point of knowing how to over- purity that excludes a person from imagination which has sanctioned come himself, perfectly, with the taking part in cultural gestures. Je- terrible forms of behaviour that in- help of God. After a few days had sus the Holy One of God breaks volve separation. During the medi- passed, he took money with him the barriers that separate the pure eval period, the laws of a state fol- and went to the leper colony. He from the impure and reintegrates lowed, from many points of view, gathered them together and gave the lepers into the human consor- the Biblical model: total exclusion alms to each one of them, kissing tium. But this exclusion is the price because a leper was ‘like a dead them on the hand. On his return, to pay for going up to an excluded man’. The greatest diffusion of this that contact which beforehand had man and tearing him away from disease during the medieval peri- been repellent, that is to say seeing his mortal solitude. And Jesus is od took place between the end of and touching the lepers, was truly not afraid of being contaminated. the eleventh century and the four- transformed in him into tender- Charity is never innocent – it con- teenth century. This was a period ness. He himself made clear in pri- taminates and it compromises. The when lepers, on a par with here- vate that looking at lepers had been man whom nobody could touch, or tics, witches and , were made so unpleasant that not only did he wanted to touch anymore, finally the targets of systematic and fero- refuse to see them but he could feels touched by somebody. And cious persecution. The third Later- not even bear to draw near to their this contact is affective language an Council of 1179 decreed that all dwellings. It happened that when which transmits the sense of a lepers should be segregated from he passed near to their homes or friendly presence. That skin which the rest of society and that church- saw one of them, although com- no one had touched for a very long es, with their own cemeteries, passion stimulated in him almsgiv- time now returns to the circuit of should be created exclusively for ing by way of another person, he relationships. The skin is not only lepers. At the fourth Lateran Coun- always turned his head the other the most extensive organ of the hu- cil of 1215 it was established that way and held his nose. But by the man body: it is also a place of ex- lepers, like Jews, had to be made grace of God he became a compan- periencing, and interchange with, recognisable to the community ion and friend to the lepers, so that, the world. by wearing special clothes. Other as he himself stated in his Testa- The fact that Jesus touches lep- signs of recognition were a yellow ment, he spent time amongst them ers (with them Jesus almost never star sown onto their clothes, a bell and served them humbly’. performs miracles at a distance) that they wore around their necks, Starting in the middle of the means that they can return to con- and a characteristic stick that was fourteenth century, leprosy gradu- tact with themselves and with oth- used to indicate what they wanted ally disappeared from the map of er people; that their situation of to purchase. The segregation of, Europe and this movement went isolation is about to finish. The en- and discrimination against, lep- from the South to the North of the counter with Jesus and with this ers fostered the proliferation in the continent. But leprosy continued to impairment of their sense of touch whole of western Europe of places remain an endemic problem in the helps the leper to welcome him- for the reclusion of lepers outside South of the world, at last until the self and to look at himself with the walls of the cities, the so-called nineteenth century. A very famous new eyes. The healing advances leper colonies, institutions which episode here is the case of the King with giant strides. But at a heavy usually had six to twelve lepers in of Hawaii, Kamehameha, who at price as well. Now, indeed, it is Je- them. Roundabout the year 1220 the end of the nineteenth century, sus who finds himself in the situ- there were at least 19,000 leper conforming to the Western model ation of being a leper, as Mk 1:45 colonies in Europe. of exclusion, decreed the need for observes: ‘Jesus could no longer It was in this context of great ex- a rigid policy of segregation and openly enter a town, but was out in clusion of lepers that Francis of established a concentration camp the country’. Jesus has taken upon Assisi made himself the agent of a for lepers on the Island of Molokai. himself the suffering of the leper; gesture which for that epoch was Surrounded on three sides by the he has contracted impurity in his scandalous. We are told about it by sea and separated from the rest of place and can no longer enter the the Legend of the Three Compan- the island by a gorge, a strip of the villages. In this way, Jesus truly ions: ‘Francis, while one day he Island of Molokai was thus trans- emerges as the suffering Servant was riding in the area around As- formed into a leper colony which who has taken on, and borne, our sisi, met a leper on the road. He the lepers could not escape from illnesses and infirmities. It is no usually felt overwhelming repug- and in which the living conditions accident that the text of Is 53:4, to nance for these unfortunate peo- (food, hygiene and health care) which reference has already been ple. But this time, engaging in vi- were at the limit of what was hu- made in this paper, in the Latin olence against his own instincts, man. The natives of the place con- text of the Vulgate speaks about he dismounted from his horse and sidered leprosy to be an incurable the suffering Servant as a leper: offered money to the leper, kiss- illness and this was why segrega- DOLENTIUM HOMINUM N. 90-2016 19

tion in the camp was equivalent to he was on a safari, his jeep broke er colonies. For many people be- a sentence to life imprisonment. down near a pond. Forced to stop, longing to populations afflicted by But it was precisely to Molokai he saw coming out of the forest a leprosy, the moral stigma and the that a Belgian priest who belonged group of lepers with their bodes practices that involve social exclu- to the Congregation of the Sacred destroyed and fear on their faces. sion belong to a background that it Hearts, Father Damian de Veuster, They looked at him and they asked is still difficult to eliminate. Para- decided to go and live. To read the him for food because they were dy- doxically, today it is easier to elim- history of this priest, who was pro- ing of hunger. This was an encoun- inate the disease than it is to elimi- claimed a saint by Benedict XVI ter that changed his life. Follereau nate the social prejudice that still on 11 October 2009, is balsam for went back to France and decided surrounds this disease, to which the soul. Father Damian landed at to help his ‘buried alive’ lepers, Christ in person, and some very the ‘colony of death’ of Molokai but because of the war and the per- great saints such as Francis of As- in the year 1870 and found in secution of Hitler, against whom sisi, Father Damian and Mother front of him an incredible spec- he had written violent articles, he Teresa of Calcutta, dedicated spe- tacle of dirt and degradation. He was forced to hide in a religious cial attention, fighting against both was thirty years’ old and began to house in Lyons. The strong words the physical signs of this mala- care for the lepers there, building of Mother Eugenia, the Superior dy and the terrible fears and ide- huts, schools, farms, a church, re- General of the Missionary Sisters as with which leprosy has always fectories, orphanages and dormito- of Our Lady of the Apostles, who been connected. ries. From being an open-air living had been greatly shaken to see a And this is the teaching of Je- cemetery, Molokai became an ex- leper colony near to the lagoon of sus: we should generate encounter emplary town where the lepers be- Abidjan in the Ivory Coast, shook with the other in order to bring to gan to live not as rejects but as hu- him out of his fear and made him everyone the possibility of know- man persons who worked, prayed leave his hiding place. Follereau ing God, of having an experience and led dignified lives. After eight- began to go round France and Eu- of God, through His person. It was een years of direct contact with rope, Asia and America, to speak Jesus himself, who through his in- these sick people, Father Damian about the problem and collect carnation, came amongst us to save himself fell ill and died of leprosy funds. Over about thirty years of and to purify those who are sick. in the year 1889, at the age of for- activity, Raoul Follereau travelled Pope Francis has said on a number ty-eight. millions of miles, collected mil- of occasions that charity, love of Father Damian, however, was lions of dollars, and managed to God, is to touch in suffering peo- one of many Christian missionaries cure a million people who had con- ple the flesh of the suffering Christ. who associated care for lepers with tracted leprosy. This seems to me to be a very fine the goal of evangelisation. Care for At the present time, leprosy has image with which to begin to re- lepers, indeed, following the gos- been eliminated in Western coun- flect together on the relationship pel example of Jesus, was seen as tries but it remains a problem of between illness and salvation. one of the highest expressions of public health care in many coun- Christian charity. Thus it was that tries in Africa, South and South- given the lack of sufficient medi- East Asia, and South America. In Notes cal personnel, many religious took 1985 there were still ten million care of these sick people, uniting lepers in the world. But thanks to 1 Cf. J.L. McKenzie, Dizionario Bibli- co (B. Maggioni ed.) (Cittadella, Assisi), the figure of the evangelising priest the results achieved by the LEP p. 536; A a.Vv., Nuovo Grande Commenta- with that of a person who cares for (the ‘Leprosy Elimination Pro- rio Biblico (R.S. Brown, J.J. Fitzmyer, R.E. the sick. gramme’) sponsored by the World Murphy, eds.) (Queriniana, Brescia, 1997), pp. 90, 782. Mother Teresa of Calcutta de- Health Organisation, the number 2 X. Léon-Dufour, Dizionario del Nuo- serves a special mention. Her love of recorded victims of this disease vo Testamento (Queriniana, Brescia, 1978) and care for lepers constitutes one has fallen dramatically. The latest p. 325, defines leprosy as a term which, in addition to the disease which bears this of the greatest examples that this survey of the WHO, of January name, refers to various kinds of afflictions extraordinary woman bequeathed 1999, limited the number of people of the skin which involved such a legal im- to our century. Unfortunately, we suffering from leprosy to 800,000. purity that the person was excluded from the community. do not have enough time here to Unfortunately, there persists, 3 Cf. A a.Vv., Nuovo Grande Commentar- speak about her but you all know still today, the ancient stigma of io Biblico (R.S. Brown, J.J. Fitzmyer, R.E. that she will shortly be proclaimed being a leper and its consequent Murphy, eds.) (Queriniana, Brescia, 1997), p. 90. a saint – significantly enough dur- forms of behaviour at a social and 4 Cf. Ibidem. ing the Holy Year of Mercy. Just as health-care level. Right up until 5 Cf. Ibidem. we are also obliged to make only the end of the twentieth century 6 Cf. Ibidem. 7 Cf. Ibidem. one reference to the great apostle people afflicted by leprosy were 8 G. Kittel, Theological Dictionary of of lepers of the last century – Raoul the victims of , The New Testament, vol. II, Michigan; WM. Follereau. A brilliant journalist with the loss of their jobs and their B. Eerdmans Publishing Company, Grand Rapids). of La Nation, in 1935 Follereau distancing from their families and 9 Cf. Ibid., pp. 902-903. was in Africa to write a piece on communities, to the point of be- 10 Cf. Ibid., pp. 782-783. Charles de Foucald when, while ing compelled to be shut up in lep- 11 Ibid., p. 925. 20 DOLENTIUM HOMINUM N. 90-2016

Hansen’s Disease: Epidemiological Data and Future Scenarios

DR. ERWIN COOREMAN MD, for elimination of leprosy. This people who develop the disease DTM&H, MSC did not mean zero leprosy. It was during a particular period. In well- Team Leader, defined as less than one case per functioning programs, this indi- Global Leprosy Programme, 10,000 population under treatment cator may provide a good meas- World Health Organization and was a benchmark for consid- ure for the true incidence, though ering leprosy as no longer being a there are settings where new cas- public health problem. This target es are not immediately picked up has been reached at national level by the health systems and remain by all countries, except for three undetected, showing an artificial- Part 1: small Pacific Island countries, the ly low case notification. The case Epidemiological Data Comoros islands and South Sudan. notification will not reflect the re- The focus now is on reaching ality when diagnosed cases are Prevalence, prevalence rates elimination at sub-national level not reported (e.g. in some private and trends in prevalence (state, province, district, etc.). clinics) or when a patient is reg- Between 1985 and 2000, we no- istered more than once, in which Dr. Cooreman first described tice a 90% decline in registered case there will be an inflation in the disease burden of leprosy in prevalence. This is explained by the case notification. terms of “registered prevalence”. the introduction of multidrug ther- During 2014, almost 214,000 This means the number of pa- apy or MDT, which allowed to new cases were notified to the tients on treatment at any given shorten treatment. Prior to this, World Health Organization. Com- point of time. The World Health monotherapy with dapsone was pared to flu or diarrhea, this num- Organization typically requests given, usually lifelong. With MDT ber is small. In Hansen’s Disease, countries to count this number which includes dapsone, rifampic- even small numbers are consid- at the end of each year. This in- in and clofazimin (the latter drug ered significant for two reasons: dicator may reflect the true num- only for the multibacillary cases), firstly, we aim to remove the dis- ber of cases in a particular setting, treatment was shortened to two ease from this world and hope that especially when a strong control years, later to one year and to six future new cases will be less and program is in place. However, in months for paucibacillary cases. A less; secondly, leprosy carries in other settings, there is a gross un- six-month uniform treatment with many countries a big social stig- derestimate of the true burden, three drugs is now being evaluat- ma and thus every new case is not with many cases remaining hid- ed for all patients, irrespective of merely a disease but a person who den and untreated. their bacillary load. If proven safe, may be ostracized from his or her Worldwide there were almost it is expected that this will further community. From this angle, eve- 175,000 patients on treatment improve programme management: ry new case is one case too much. at the end of 2014, which cor- a shorter regimen enhances treat- The highest burden is again responds to a rate of 0.24 per ment compliance while a uniform borne by the South-East Asia Re- 10,000 population. The highest regimen makes classification of gion (especially India and Indone- burden was found in the South- patients redundant. Once patients sia) with over 150,000 new cases East Asia Region,1 which ac- complete the prescribed treatment, in 2014, corresponding to 8.3 per counted for more than two-thirds they appear no longer in the treat- 100,000 population. This is fol- of the global burden. Countries ment register and are thus no long- lowed by Americas where Brazil in Europe did not report to the er included in the prevalence, from accounts for 90% of the regional World Health Organization. It is there the decline. burden. The numbers are much believed that leprosy is a rare dis- It could also be that the number lower in the Eastern Mediterrane- ease in this region. The number of of new cases of Hansen’s Disease an and Western Pacific Regions. patients on treatment is likely un- has reduced during the same peri- The global leprosy burden is derestimated as some countries in od. This is likely the case in some not uniformly distributed but con- Africa and Latin America did not countries but cannot explain this centrated in only a few countries. submit reports. From previous re- major decline globally. Three countries constitute “Group ports, we know that these coun- A” and contributed 81% of the tries have a significant number of Incidence, incidence rates and new cases worldwide in 2014. undiagnosed (and therefore unre- trends in incidence These countries are India (more ported) cases as well as cases on than 125,000 new cases), Brazil treatment but not reported. The number of new leprosy with more than 30,000 new cases The World Health Assembly had cases detected is a proxy indica- and Indonesia, reporting 17,000 passed a resolution in 1991 calling tor for incidence or the number of new cases. DOLENTIUM HOMINUM N. 90-2016 21

Countries in “Group B” re- leprosy incidence in a good sce- count. While elimination as a pub- ported between 1000 and 10,000 nario including infant immuniza- lic health problem was achieved new cases annually and includ- tion with bacille Calmette-Gué- around the year 2000, it should be ed , Myanmar, Ne- rin is a slow, gradual decline of clear that this does not mean that pal, Philippines and Sri Lanka in around 4.5% per year. A large, the leprosy problem is solved. At Asia; and the Democratic Repub- sudden fall in transmission seems the community level, the leprosy lic of the Congo, Ethiopia, Mad- biologically implausible given the burden is constituted by the num- agascar, Nigeria and the United long and variable incubation pe- ber of new cases as well as old Republic of Tanzania in Africa. riod in leprosy and the evidence cases that we call cured but that Mozambique reported more than of continuing, significant rates of live with irreversible deformities. 1000 new cases in previous years new cases in children. A second Another (regional) example but did not submit a report to the explanation is that there was sub- was given from the Western-Pa- World Health Organization in stantial overdiagnosis of leprosy cific Region. This region includes 2014. This second group of coun- prior to 2001, which has inflated countries such as China, Viet tries collectively contributed 12% the previous levels of new case Nam and the Philippines. Dur- of the global burden. detection. This may be a factor to ing the period 1990-2014 showed Group C consists of 83 coun- explain the peak of new case de- a trend that was very consistent tries that reported at least one case. tection between 1996 and 2001, with the natural evolution of the The above-mentioned grouping a period of intensified case de- epidemic, accelerated by sound of countries is based on absolute tection activities, when intensive control programmes and econom- numbers of new cases notified, leprosy elimination campaigns ic growth. There was a decline of which highlights immediately were implemented. However, about 6% per year, pretty consist- where the highest disease burden the new case detection trends be- ent over the past 25 years. is located. However, this gives tween 1985 and 1996 are remark- less information about the inten- ably stable and sustained overdi- sity of transmission. Notification agnosis seems unlikely over this Part 2: rates – new cases per 100,000 period. The third and most prob- Global Leprosy Strategy population – are a better measure able explanation is that the dra- 2016-2020 for transmission. The highest case matic fall in new case detection detection rates are found in the is a result of a decline in lepro- Development of the Global Comoros islands (and especially sy activities following the decla- Leprosy Strategy in Anjouan island) and three Pa- ration of elimination as a public cific Island countries (the Feder- health problem globally, and in The Global Leprosy Strategy ated States of Micronesia, Kiriba- individual countries. This decline 2016-2020 was built on the rich ti and the Marshall Islands). These resulted in several countries in a experience and contributions of countries have small populations reduced intensity and coverage many actors. It is a logical next (a few hundred thousands) but of case detection activities, com- phase after the three most recent report between 100 and 250 new munity awareness, and training strategies, each encompassing a cases each. When we examine in the diagnosis and treatment of period of five years: (1) the Fi- the details more carefully, these leprosy often associated with the nal Push Strategy for the Elimi- countries have relatively more move from vertical leprosy con- nation of Leprosy, 2000-2005; children and more paucibacillary trol activities to integrated ap- (2) the Global Strategy for Fur- cases, both pointing towards in- proaches. The recent rise in dis- ther Reducing the Leprosy Bur- tense ongoing transmission. ability in new cases detected and den and Sustaining Leprosy Con- High rates are also found within the increasing delay in diagnosis trol Activities, 2006-2010; and other high burden countries such reported by many countries sup- (3) the Enhanced Global Strategy as in India, Brazil, Indonesia and ports this explanation. for Further Reducing the Disease sub-Saharan African countries. A country example from Indo- Burden due to Leprosy, 2011- The trend in notifications of nesia was provided of long-term 2015. It also builds on the Road- new cases during the last dec- trends in number of patients on map to address neglected tropical ade shows a very striking fea- treatment (proxy for prevalence) diseases (2012-2020). ture: a dramatic and sudden de- and new cases detected (proxy for The process to develop the cur- cline in new case detection of incidence). The fall in prevalence rent strategy took one and a half over 60% over a short period of was completely attributable to the years and included multiple con- time (2001–2005). Understand- introduction of MDT and shorten- sultations rounds with national ing the possible explanations for ing of the duration of treatment. program managers, partners and this dramatic fall is very impor- The number of new cases did representatives from affected tant. One explanation is that this not change dramatically during communities. Though the devel- represents a true fall in the inci- the same time period. A slight in- opment took a long time, the fact dence of leprosy following reduc- crease in absolute number of new that many stakeholders were in- tion in transmission of Mycobac- cases was even observed, though volved and took ownership will terium leprae infection. Disease the almost doubling of the coun- let us hope that the strategy will modeling work has suggested that try’s population during this time be more easily accepted and im- the long-term underlying trend in period also has to be taken into ac- plemented. 22 DOLENTIUM HOMINUM N. 90-2016

The World Health Organization Leprosy Strategy contains a list to donate MDT for all patients had received a grant from The of indicators that further elabo- worldwide till at least 2020. Nippon Foundation, which al- rate this goal. Persons affected by leprosy lowed the Organizations to organ- Three principal targets have should be involved in all stages ize the consultations and develop been singled out of the many tar- of the strategy development and the strategy. gets. The first one is zero children subsequent implementation. They The Global Leprosy Strategy is with leprosy and visible deformi- are not just mere recipients of ser- not a mere strategy of the World ties by 2020. It is a shame that in vices but, having gone through Health Organization or a country the twenty-first century children or coping with the disease, know strategy or a strategy of a non- are still diagnosed with leprosy better than anybody else what is governmental organization or a and deformities. This reflects our needed. donor. It is all of these. It is com- collective failure of not detecting Lastly, the protection of basic prehensive and inclusive and aims these children early as most of human rights, reduction of social to cover all important aspects of them are contacts of known lep- stigma and restoration of digni- leprosy control in today’s world. rosy cases. Addressing it requires ty of leprosy affected people has It expands approaches with prov- cutting the transmission in house- received a prominent role in the en success and introduces innova- hold settings. The second target is Global Leprosy Strategy. tive actions. to reduce the rate of newly diag- Though the main focus is on nosed leprosy cases with deform- Pillars and components high burden countries, in order ities to less than one per million to have maximum impact glob- population. And the third target The Global Leprosy Strategy ally, other contexts are also con- focuses especially on the human is centered around three strategy sidered. Leprosy is not uniformly aspect of leprosy by aiming for a pillars, each with a set of com- distributed across and even with- repeal of all laws worldwide that ponents. There is an overarching in countries: there are hot spots provide a legal cover for discrimi- pillar, linked to governance, stew- in countries reporting few cases nation of leprosy patients. While ardship and overall program man- while there are also silent zones such laws may already have been agement, which should be led by in countries still reporting a large repealed or become obsolete in a national government entity, in number of cases. many countries, there are still in- collaboration with partners based The strategy is linked to the stances where leprosy patients are on comparative advantage. Gov- broader context in health and de- divorced, loose their or are ernment buy-in is necessary in or- velopment, including the agen- deprived of an inheritance, only der to cover entire countries ter- da of universal health coverage because they are diagnosed with ritories and populations for many and the sustainable development a curable disease. years to come. The second pillar goals. Leprosy control does not is the more medical pillar, focus- only contribute to Sustainable Guiding principles ing on interrupting transmission Development Goal 3 (related to of leprosy and averting or ad- health and well-being) but to a While developing the strategy, dressing complications. The third variable extent also to other goals five principles were identified pillar focuses on stopping dis- such as poverty reduction, gender that are underpinning the strategy crimination and promoting inclu- equality, decent work and eco- components and are of cross-cut- sions of persons and communities nomic growth, reduced inequali- ting nature. affected by leprosy. ties, peace and justice and part- National governments have a The first pillar is overarching nerships. key role to play. This is because and linked to governance and pro- targeting a disease of elimination gramme development. It encom- Vision, goal and targets requires a nationwide coverage passes: sustained over a long time period. – Ensuring political commit- The vision is a leprosy-free While partnerships with other ac- ment and adequate resources for world. It is a long standing dream tors in the field are of utmost im- leprosy programmes: funding, of a world without Hansen’s Dis- portance, elimination cannot be human resources, drugs, guide- ease, without transmission of in- dependent on time-bound or geo- lines, etc. fection or due to lep- graphically-limited projects. – Contributing to Universal rosy, a world without stigma and There is the need to sustain lep- Health Care with a special fo- discrimination linked to leprosy. rosy expertise in a context of a cus on children, women and un- While one would wish this to be dwindling number of leprosy ex- derserved populations including realized soon, this will unlikely perts and challenges of becoming migrants and displaced people. happen before the end date (2020) acquainted with leprosy with less Leprosy is known to dispropor- of the current strategy. cases around. tionately affect marginalized pop- A realistic goal has been agreed Any service for leprosy should ulations. to further reduce the global as be of good quality and also take – Promoting partnerships with well as local leprosy burden and care of children and other vulner- non-state actors and promoting go for elimination at sub-nation- able populations. This includes intersectoral collaboration and al levels. The Operational Guide- also availability of anti-leprosy partnerships at international level lines that accompany the Global drugs. Novartis has committed and within countries. This refers DOLENTIUM HOMINUM N. 90-2016 23

not only to the traditional leprosy some forms of campaigns should tant, more than for any other dis- agencies but also other commu- again be undertaken. How this is ease, as it is exactly the stigma nity-based organizations or agen- done, through skin camps, door- associated with leprosy that hin- cies in other sectors such as the to-door surveys, or combined with ders effective control of the dis- press, lawyers, maybe some pri- other diseases or other campaigns, ease. Hence, this piece of work vate companies interested in de- is to be decided based on the lo- has been elevated to a full pillar veloping corporate social respon- cal situation. Campaigns are gen- of the strategy. sibility schemes for leprosy, etc. erally very labour intensive and There are two important as- – Conducting basic and opera- costly. They should thus be judi- pects underpinning this pillar: tional research on all aspects of ciously designed. Checking fam- eliminating stigma and promot- leprosy and maximizing the evi- ily or social contacts of known ing inclusion. While addressing dence base to inform policies, leprosy patients should yield more stigma and its underlying causes strategies and activities. Though new cases than examining general is important, it was felt that this leprosy is an age-old disease, there community members, especially is not sufficient. A pro-active ap- are still many fundamental ques- in lower burden countries, where proach is required to restore the tions unanswered, e.g. can infect- almost all cases can identify an in- dignity of affected persons and ed people (without the disease) dex case in the family. communities. transmit the infection? Is resist- Following diagnosis it is im- This pillar includes all activities ance against the drugs spreading? portant that treatment is prompt- related to participation of affected – Strengthening surveillance ly started to reduce the duration people in leprosy services, includ- and health information systems of infectiousness and also to im- ing policy formulation, planning for program monitoring and eval- prove adherence since many pa- service delivery and evaluation. uation. This will become even tients do get lost while waiting for The mantra is “nothing for leprosy more important when leprosy be- treatment. The current treatment affected persons without them”. comes a more rare disease. regimens, lasting for six or twelve The strategy aims to build bridg- The word that summarizes this months, are being reviewed with es, coalitions with affected people first pillar is “accountability”. The the possibility of adopting a uni- and communities and abandon the leprosy community (in the broad form regimen of six months for all practice of segregating them. This sense) will be held accountable forms of leprosy. While resistance includes social rehabilitation par- for achieving what the Global in leprosy has been documented, ticularly for those who are other- Leprosy Strategy aims to. Five it is a very small problem. How- wise most negatively affected. It years from now, there should be ever, vigilance is required and ca- is paramount that abolishing laws a significant further reduction in pacity must be built for monitor- that sanction state-based discrimi- burden. ing resistance against anti-leprosy nation are repealed, but also that The second pillar focuses most- drugs. steps to positively advance the ly on the medical and control as- While leprosy experts are get- role of leprosy affected people in pects of Hansen’s Disease and is ting older and are insufficiently society are promoted. the traditional domain of nation- replaced, opportunities should be This pillar may not be the im- al leprosy programs. Most com- availed of introducing new meth- mediate responsibility of minis- ponents are linked to case detec- ods and technologies for transfer- tries of health. But it is important tion and management. Important ring the knowledge and skills to that national leprosy programs is the renewed emphasis on case the next generation of health ser- understand the importance of this finding. vice providers. New methodolo- pillar and play a role of advo- An increase in awareness in the gies including e-health or mobile cates with the relevant ministries community about the signs and apps can provide sustainable av- as well as with partners who may symptoms of Hansen’s Disease, enues. be much better placed to take the importance of early detection (be- Prompt diagnosis and early lead in implementing necessary fore deformities occur), treatment treatment is considered as the activities under this pillar. and curability should prompt pa- principal way of preventing lep- This third pillar can be summa- tients to seek care earlier and re- rosy. However, prophylactic treat- rized in the word “inclusion”. duce stigma. In leprosy, early de- ment and maybe immunotherapy A bicycle was unanimous- tection and passive detection, i.e. may also be useful in preventing ly chosen as logo for the Global waiting till patients self-report, are breakdown of disease in infected Leprosy Strategy and will also pretty contradictory. Some forms people. This is an area still under be used for other documents that of active case detection have to be study but that has the potential will be published linked to this. pursued. While campaigns were of becoming a game-changer in The bicycle has three main fea- regularly organized many years global leprosy control. tures: two wheels, which repre- ago, this had become taboo with The second pillar can best be sent pillars 2 and 3 (the medical integration, assuming that all pa- summarized in one word: “Ac- and social arms of the strategy) tients would self-report in a de- tion”. and the frame, representing pillar centralized and integrated setting. The third pillar is entirely de- 1, which holds the two other pil- This assumption did not come true voted to the human, social and lars together and is the frame on in many settings. Especially in ar- economic aspects relevant for which the other two pillars are an- eas of known high endemicity, leprosy. This is crucially impor- chored. 24 DOLENTIUM HOMINUM N. 90-2016

Part 3: when we say that a patient has priests, brothers and lay people Conclusion been cured. There is thus a contin- offer dedicated services in the ued need for “care after cure” pro- care and management of leprosy. The future of leprosy control grammes for this group of people. All partners are expected to looks very positive from epide- continue supporting community miological viewpoint. We are at Call for action mobilization activities to improve a crossroad where disappearance early detection of Hansen’s Dis- of a dreadful disease is not a uto- Partners are expected to con- ease and transmit messages to fur- pia but a realistic goal for the next tinue to play an active role in this ther reduce the stigma against the generations. changing context. Contributions disease. We also count on govern- The current downward secular to leprosy control by nongovern- ments and partners alike to further trend is likely to continue. Ap- mental and community-based or- take care of the unfinished agenda propriate interventions can ac- ganizations merit special credit. of providing care after cure and celerate this trend. Transmission Hosting the International Sym- promote the integration of lepro- of the leprosy bacillus has halted posium on holistic care for peo- sy-affected persons in the com- in many countries and can stop ple with Hansen’s Disease in munities to which they belong. in the remaining hot spots. This Vatican City, the heart of the Ro- Future support and adequate should first be visible in absence man Catholic Church, draws ad- funding will remain paramount of children with leprosy, since ditional attention to the efforts of for successful Hansen’s Disease they are recently infected. Reac- faith-based organizations in lep- programs for many more years to tivations may continue for many rosy control. Agencies such as come. more years in older people who the Catholic Health Association have been infected long time ago of India and similar organizations during a time that active transmis- in Africa, Asia and Latin America Note sion occurred in their community. are providing a range of services Unfortunately, the visible de- in a very professional fashion, in- 1The South-East Asia Region of the formities and disabilities that can- cluding administering MDT, pro- World Health Organization consists of the following countries: Bangladesh, Bhutan, not be corrected through recon- viding ulcer care, offering coun- Democratic Republic of Korea, India, Indo- structive surgery and are the main selling services, reconstructive nesia, Maldives, Myanmar, Nepal, Sri Lan- cause of stigma will remain, even surgery and rehabilitation. Nuns, ka, Thailand and Timor-Leste DOLENTIUM HOMINUM N. 90-2016 25

FIRST SESSION MEDICAL-SCIENTIFIC ASPECTS:

1. The Fight against Leprosy: Current Challenges and Strategies

DR. MARCOS VIRMOND major landmarks that are worth alence below 1 case per 10,000 MD PHD mentioning. These are as follows: members of the population. The Professor, Graduate Studies a) The identification of the figures and trends at the time sug- in Public Health, the University causative agent by G. A. Hansen gested that this ambitious goal of the Sacred Heart (USC), in 1874. was feasible. Bauru, Brazil; b) The introduction of sul- Its implementation had a Director, Instituto Lauro phones, including dapsone, for marked epidemiological impact. de Souza Lima (CSS-SES) SP, treatment in the late 1940s. The prevalence of active cases Bauru, Brazil; c) The in vivo growth of M. lep- declined dramatically all over the President, the International rae in mice and later in armadil- world. Initial figures showed that Leprosy Association los. within two decades there had been d) In this sequence, last but not a marked decrease in the estimat- the least, the introduction of the ed of leprosy cases worldwide: WHO-recommended multidrug from 10 to 12 million in the mid therapy in the middle 1980s and 1980s to 0.51 million in 2003. Introduction its consequences. Another important achieve- e) At the end of the year 2000 ment of the elimination strategy Recently, archeological studies the sequencing of the entire ge- with MDT, sometimes neglect- have revealed absolute evidence nome of M leprae. ed, was the improvement in the for leprosy in an Egyptian skel- organizational aspects of lepro- eton of the second century BC, sy control services, that is to say although the earliest written re- The MDT Era the improved quality of care and cords of the disease come from a new sort of relationship of the India and date back to 600 BC. It was obvious by the mid- health team with patients. These findings make leprosy one 1970s that the efforts to control The WHO elimination strategy of the oldest diseases known to leprosy using long duration, even may thus be seen as the most re- mankind. lifelong, dapsone monotherapy markable and controversial event Certainly, the fight against the were failing due to increasing re- in leprosy control since the adop- disease started as long ago as its sistance to the drugs involved. tion of the compulsory isolation history. Methods for this are dif- In 1981 the World Health Or- of cases. ficult to confirm. However, social ganization convened the Study However, despite the relevant restriction was probably adopt- Group on Chemotherapy for Lep- achievements with MDT and the ed when the first cases appeared, rosy Control. This Study Group elimination strategy, we reached due to a mixture of disagreeable recommended combined drug the twenty-first century with lep- skin lesions, a sense of impurity, regimens based on the supervised rosy still affecting people in many dreadful disfigurement, nauseat- intermittent administration of ri- countries in the world. Indeed, be- ing odors, and the lack of effec- fampicin for both MB and pauci- sides the reduction in the preva- tive treatment. bacillary (PB) leprosy. lence of the disease, the detection In this context, when the ad- Due to the substantial progress rate of leprosy remains almost vances in medical science are con- in leprosy control achieved by stable in the principal endemic sidered, it is intriguing that in the implementing MDT, the World countries of the Americas, Africa twenty-first century this disease Health Assembly (WHA) in 1991 and Asia. continues to affect large propor- called for the “elimination of lep- To cope with this problem, the tions of the world’s population. rosy as a public health problem by World Health Organization and its In fact, the time line of the his- the year 2000”, defining elimina- partners organized broad and im- tory of leprosy shows only a few tion as attaining a level of prev- portant meetings to review strat- 26 DOLENTIUM HOMINUM N. 90-2016

egies and renew the commitment stressing the need for govern- 3. Interrupting transmission to a world free of leprosy. One mental authorities to avoid com- of them was in the year 2009 and placency in fighting leprosy and I dare to say that the main chal- it launched the “2010-2015 En- making the commitment to a lenge of this century is to inter- hanced Global Strategy for Fur- world free of leprosy a high-level rupt the transmission of leprosy. ther Reducing the Disease Burden priority. If MDT can cure people, it is ra- due to Leprosy”. Another meeting tional to assume that MDT, to- that was remarkable because of 2. The lack of clinical expertise gether with early diagnosis, will its political aspect was the Bang- be paramount in interrupting the kok Summit in 2013 which pro- Leprosy is a clinical entity, the chain of transmission. However, duced one of the most relevant diagnosis and management of data so far indicate that MDT has documents of this century, the which is mostly based on clini- not had a striking effect on the re- Bangkok Declaration, which was cal examination. The adequate duction of leprosy transmission. signed by Health Ministers from management of cases, including a Indeed, the transmission of M. the seventeen high-burden leprosy correct classification, is based on leprae still appears to be occur- countries of all the WHO regions. clinical realities integrated with ring at a relatively consistent rate Nowadays, leprosy still poses laboratory findings. in many countries. further challenges and new strate- With the introduction of MDT Therefore, new strategies gies are required to cope with the and its shorter regimen duration should be designed to interrupt remaining burden of the disease. leading to an important reduction the transmission of M. leprae. A in prevalence, the medical interest key point here is the long dura- in leprosy now seems to be pro- tion of the incubation of the dis- Current Challenges gressively fading away. ease and infection that is difficult and Strategies A probable reason for this is the to detect. Furthermore, transmis- idea that leprosy is being elimi- sion that takes place before the 1. The potential lack of nated, and even eradicated, as a detection of the case is likely to governmental commitment clinical entity, and, therefore, that result in many more new cases in it is no longer a health problem of the future. After the encouraging results concern. Research in this area is man- of the MDT elimination strategy, The consequence is that lepro- datory in order to develop practi- some partners and governments sy has little space in the agenda cal diagnostic tools to detect lev- tended to perceive the leprosy of medical schools throughout els of infection that can lead to problem as relatively small and the world and the expected result transmission. It is important to this produced a reduced political of this is misdiagnosis or a delay stress that basic control measures, commitment, with a lack of pri- in diagnosis (which are both det- such as early diagnosis and com- ority being given to the disease, rimental to the patient and to the plete MDT treatment, are essen- and reduced resources in dealing control of the disease) during the tial components in interrupting effectively with this still relevant elimination or post-elimination transmission. However, control of public health problem. A shortage periods. transmission is not solely depend- of funds for research in leprosy Therefore, one of the present ent on the identification of sub- was also observed. challenges is to maintain a consid- clinical infection by appropriate Therefore, we have understood erable degree of leprosy expertise. diagnostic tools, or on early treat- that it is time for leprosy-endem- In those countries with a notable ment of cases, improved housing ic countries, as well as their inter- past prevalence and a relevant de- conditions, sanitation and educa- national and national partners, to tection rate, leprosy should be part tion. We are not quite sure if man reaffirm their commitment and to of medical courses, at least in the is the only reservoir for M. leprae. strengthen their participation in disciplines of dermatology, tropi- Of great importance is the fact addressing leprosy in order to en- cal medicine or infectious diseas- that patient contacts and neighbor sure a leprosy-free world. es. Authorities in the Ministries contacts are an important catego- The primary responsibility for of Health should be in charge of ry in the transmission of leprosy. leprosy control rests with gov- contacting medical societies and They can be healthy carriers of ernments. Governments should medical schools to promote the in- the disease and/or they can carry act through partnerships with clusion of leprosy in the curricula a definite sub-clinical infection. international organizations, in- of medical studies. For such a sensitive group, pre- cluding WHO, the private sec- Another important need is to ventive measures are of striking tor, local and international NGOs, give full support to maintaining in- importance. CBOs, as well as people affected ternational centers of excellence in The recent LPEP strategy – by leprosy. To achieve this, gov- leprosy studies around the globe to Leprosy Post-Exposure Prophy- ernments and all involved parties serve as a reservoir of knowledge laxis – is an effective answer to should allocate increased resourc- on leprosy and to provide teaching this need. The Leprosy Post-Ex- es in the coming years in a sus- and training to doctors from coun- posure-Prophylaxis (LPEP) pro- tainable manner. tries where leprosy is no longer a ject is a collaboration between the In this context, the 2013 Bang- significant problem, although pre- Novartis Foundation and its rel- kok Summit was a landmark in sent to a notable degree. evant partners that seeks to test DOLENTIUM HOMINUM N. 90-2016 27

the feasibility and effectiveness prevent leprosy related disabili- ical point of view, stigma and dis- of single-dose as a lep- ties and to interrupt transmission crimination are potential factors rosy post-exposure prophylaxis. is still to provide early diagnosis in preventing the presentation of Rifampicin is given to contacts of and adequate treatment. cases for diagnosis and adequate newly diagnosed leprosy patients However, late detection is a treatment, and this leads to in- to decrease their risk of develop- multifactorial issue. creased opportunities for trans- ing leprosy. – Scarce or unavailable health mission of the disease. Further- As regards measures to in- services. more, some patients may interrupt terrupt transmission, the LPEP – A lack of knowledge and their treatment prematurely due to seems to me the most relevant and skills. a fear of stigmatization because of innovative proposal to modify the – A lack of drugs for treatments. an uneven darkening of skin due relative monotonous epidemio- – Ineffective referral systems. to the use of clofazimine. logical course of the disease over – Accessibility of services (so- Worse than this perceived stig- the next decades. cial, cultural, economic, mobil- ma is the institutional discrimi- ity). nation imposed by archaic leg- 4. Vaccine – Lack of awareness. islation that still exists in some – Stigma and discrimination. countries. A survey conducted by Those who have studied lep- the ILEP revealed that in 63 coun- rosy control measures agree that 6. Research tries, persons affected by leprosy having a vaccine with a high pro- are subject to discrimination be- tective capacity and with few side There is a clear picture among cause of the law. This legislation effects would greatly reduce the leprosy workers that leprosy is includes the segregation of lepro- transmission of leprosy. not going to disappear anytime sy cases, the right to divorce, re- So far, the most common vac- soon. Many challenges remain fusal of access to public places, cine strategy has been to immu- unsolved in different fields of the deportation, and the refusal of en- nize individuals with M. bovis disease. Just to mention one, the try visas in a few countries. BCG. The degree of protection causative agent is still not cultiva- It is amazing to see that in the against leprosy provided by BCG ble in vitro, although with limit- second decade of the twenty-first vaccination, however, has varied ed success this has been achieved century legislation such as this is dramatically between studies and in vivo. Besides that, the precise still present in some countries. the clearest indication that BCG mechanism of the transmission Therefore, fighting stigma and is not perfect is the indisputable of is not discrimination is an urgent need fact that leprosy remains endem- clearly understood and extensive that has to be addressed by gov- ic in countries where BCG im- studies have not yet produced any ernments, national and interna- munization is extensive, such as practical and effective tool for tional societies that work with Brazil. early diagnosis. Furthermore, a leprosy, including scientific asso- A vaccine for leprosy has for highly effective vaccine has not ciations and organizations of peo- long been on the agenda of many yet been developed. Therefore, in ple affected by leprosy, in close researchers and we have reached the case of leprosy we face great contact with other organizations the twenty-first century without limitations in the usual research that address similar discriminat- any concrete results that produce approach adopted with most in- ing conditions such as HIV and an effective vaccine to be used in fectious diseases, for example: tuberculosis. the context of controlling leprosy. (1) It is not easy to obtain great Recently, a project from the IN- amounts of the viable causative DRI in the USA has been working agent; (2) it is not possible to de- Concluding Remarks on a new proposal of a vaccine vise effective preventive meas- against leprosy and this is show- ures due to gaps in the under- M. leprae seems to be a bacte- ing promising results. standing of the transmission of rium of this earth whose presence Although difficult to attain, the the disease; and (3), lastly, it is in the world is unavoidable. De- availability of an effective vac- difficult to protect populations spite the enormous accumulation cine would support the interrup- due to the continuing unavailabil- of knowledge about its behavior tion of the chain of transmission ity of an effective vaccine. in relation to the environment and of the disease. Therefore, con- In conclusion, these reasons man, the disease it causes seems stant technical and financial sup- support the need for continued re- to be approaching a stable condi- port should be secured for initia- search and increasing funding for tion. tives in this field. research into leprosy. If one studies the burden of lep- rosy from antiquity to the twenty- 5. Early diagnosis and adequate 7. Stigma and discrimination first century one cannot deny the treatment before the onset of tremendous improvements that disabilities Stigma and discrimination have have been achieved in the treat- been historically linked to lep- ment and control of the disease. Despite the technological and rosy. From the patient’s perspec- However, in the centuries to scientific advances in the field of tive, they can affect individuals come if the social condition of the leprosy, the most effective way to and their families. From the med- populations of the world improve 28 DOLENTIUM HOMINUM N. 90-2016

due to a political improvement terrifying disease that threatened However I am quite convinced in access of these populations humankind for many millennia. that in this distant (faraway) sce- to new technologies in the fields Therefore, leprosy will be, finally, nario, scientists will continue to of agriculture, health and social a disease that will have been tru- be intrigued by many aspects of sciences, leprosy will only find ly eliminated and eradicated from the biology of M. leprae which space in medical museums as a the surface of the earth. will remain unsolved.

2. The Elimination of Leprosy and Neglected Diseases as a Problem of Public Health Care

DR. FRANCESCO It should be emphasised that tries. In Africa, those countries are MARAGLINO leprosy can be treated. In addi- Ethiopia, , Nigeria, the Head of the Office tion, if the treatment is admin- Democratic Republic of the Congo for Infectious Diseases istered during the first stages of and Tanzania; in Asia, Bangladesh, of the General Department the illness it is possible to avoid the Philippines, India, Indonesia, for Prevention in Health Care, forms of . Myanmar, Nepal, and Sri Lanka; the Ministry of Health, Throughout the world multi- and in Latin America, Brazil. Italy pharmacological treatment has The strategy of the World been offered free by the World Health Organisation for the elimi- Health Organisation to all patients nation of leprosy has been called ansen’s disease is a bacte- since the year 1995. This therapy ‘Final Push’ and this strategy is Hriological infectious disease is a simple and effective cure for based upon the following points: which has a sub-acute-chronic all kinds of leprosy. Over the last – Increasing the availability of development and is caused by a twenty years, it is calculated that multi-pharmacological therapy to micro-bacterium, mycobacterium throughout the world over sixteen all health-care institutions. leprae, which multiplies slowly. million people with Hansen’s dis- – Ensuring that all cases, both It has a period of incubation that ease have been treated with multi- those that already exist and those lasts about five years, although pharmacological therapy. diagnosed in the future, receive the symptoms can require up to At a world level, we have been appropriate multi-pharmacologi- twenty years to emerge. This dis- witnessing a steady reduction in cal treatment. ease provoke lesions of the pe- cases of leprosy. Ever since the – Educating patients so that ripheral nerves, of the skin, of the year 2000, a prevalence has been they receive the treatment regu- mucous of the upper respiratory achieved of less than one case in larly and in a complete way. tract, and of the eyes, and has ef- every 10,000 people. It is there- – Spreading information about fects that often involve invalidity fore believed that leprosy no leprosy in communities, at a when it is not diagnosed swiftly longer constitutes a grave prob- grassroots level, so that individ- and a correct multi-drug therapy lem for public health. uals with suspected lesions feel is then administered. The data of the World Health supported by their communities Although it is not highly infec- Organisation, which come from and notify them about it of their tious, transmission of this disease 103 countries in five regions of own accord. takes place through drops that the world (excluding the region of – Monitoring the effectiveness come out of the nose or mouth Europe, given the low number of of the implementation of strategy during close and frequent con- cases in that region), show that at by establishing beforehand chron- tacts with patients who have not the end of the first quarter of 2014 ograms and objectives. been treated. the prevalence of the disease was – Documenting all activities Thus the carrying out of a cor- a little more than 180,000 cases that are promoted in the field of rect diagnosis and subsequent throughout the world, whereas the implementation of the strate- treatment are of primary impor- during the year 2013 215,557 new gy for the elimination of leprosy tance. Indeed, an untreated infec- cases had been recorded. in order to assess their progress. tion can cause gradual and perma- The areas where the disease is In Italy, the epidemiological nent damage to the skin, to nerves, most endemic, with over 1,000 situation as regards leprosy has to limbs and to eyes, and this can new cases a year over the last five changed profoundly over the last lead to grave forms of invalidity. years, are limited to certain coun- ten years. Indeed, new cases of DOLENTIUM HOMINUM N. 90-2016 29

leprosy have been ones that above – The ministerial decree of 15 The diagnostic-therapeutic path- all else have been imported from December 1990 which sets out the way, as I pointed out, is implement- abroad. If we analyses the data of system of information about in- ed at the regional reference centres the last ten years, we can see that fectious and widespread diseases. as envisaged by the guidelines of in Italy ‘home-grown’ cases have – The guidelines for the control the year 2001. In these guidelines, been between 0 and 3 every year, of Hansen’s disease in Italy which the institutions responsible for this whereas, during the same period, were issued in June 1999. are listed, with a differentiation the imported cases have varied – The official guidelines and ar- made between local centres estab- between 2 and 20 a year. As re- rangements for the coordination lished at a regional level and na- gards the autochthonous cases, we of regions and autonomous Prov- tional reference centres. There are have witnessed the disappearance inces in relation to Hansen’s dis- four of these last in Italy and they of centres of infection on the Ion- ease which were issued in May are to be found in Genoa, Cagliari, ian coast of Sicily and Calabria, 2001. Gioia del Colle (BA) and Messina. on the west coast of Sardinia, and As regards the system of infor- The laboratory in Genoa also per- in the west of Liguria. mation, it should be remembered forms the role of being a supra-re- The provisional data for the that Hansen’s disease is placed in gional institution. period 2014-2016 confirm this the third class and has a differen- The local centres have, in par- trend, a trend linked to the im- tiated information flow that in- ticular, the task of sending pa- portation of cases from countries cludes the compilation of an epi- tients suspected of having leprosy where leprosy is highly endemic. demiological form. to reference centres for the con- One can thus state that this pa- The guidelines constitute the firmation of the diagnosis, imple- thology, which seemed destined document of reference for the di- menting protocols of treatment to disappear given the constant agnosis, treatment and manage- and rehabilitation, and carrying reduction in autochthonous cases, ment both of people with the dis- out periodic controls on patients has instead experienced a wors- ease and their family contacts. In and those who live with them. ening because of imported cases. particular, I would like to observe The national reference centres, Specifically because of the new that the principal source of infec- in addition to confirming the di- epidemiological characteristics tion is patients who are infected agnosis, establish protocols for of this disease in Italy, it should with leprosy but who have not treatment and the end of the treat- be emphasised that the cases of been treated. Italian citizens with ment, give notice of confirmed it are no longer confined to a few Hansen’s disease must have peri- cases, and attend to the ongoing centres of infection limited to a odic controls in order to receive training of health-care personnel few areas but can appear through- the financial payment envisaged in this field. out the national territory of Italy. by the law. The domestic contacts The notification flows are two- Here two factors should be re- of these patients must also receive directional and designed to in- ferred to: on the one hand, the periodic controls and especial at- form all the individuals and insti- heavy medical and social conse- tention is paid to children. In con- tutions involved both in the local quences of this pathology which trary fashion, in the workplace and areas and at a regional and central can become highly disabling, and, schools controls are not carried out level. on the other, a low level of knowl- and this is done to avoid stigma. To end this paper, I hope that edge about this disease amongst Where a diagnosis is carried out in in a short time an updating of the health-care personnel. reception centres or centres of vol- guidelines will be achieved, re- Amongst the factors that foster untary service of cases for people viewing the definition of a case the appearance of this disease, we where the presence of the disease of leprosy as well as laboratory should remember both individual is suspected, it is recommended methods on the basis of the most characteristics, such as chronic that patients be sent to specialised recent available information. Last nutritional deficiencies, and un- public institutions. I will speak but not least, data in the litera- favourable living conditions, and, about this shortly. These services ture in the field, although anecdo- lastly, factors linked to access to are a useful resource by which to tal, have reported in some clinical socio/health-care services, which educate patients and their fam- cases the beginning of the appear- themselves are increased by lan- ily relatives. However, the train- ance of examples of resistance guage barriers. ing that is provided at both a uni- to anti-leprosy medical products Italian legislation on Hansen’s versity level and during refresher with some strains of the bacte- disease is a little dated and is courses on this pathology should rium. This is a phenomenon that made up of three measures: be intensified. should be carefully followed. 30 DOLENTIUM HOMINUM N. 90-2016

3. The Modern Challenge of an Ancient Disease

DR. ANN AERTS come symptomatic, during this Tropical Diseases (NTDs). These Head of the Novartis time leprosy can be unknowingly goals include continuing to work Foundation, transmitted. together to make leprosy history. Belgium In the absence of a better di- This is an ambitious goal, but it agnostic tool, the most effective is one the Novartis Foundation is way to interrupt transmission and committed to, and one I believe n the small village of Dana Toc eliminate leprosy is contact trac- we can achieve. Iin Myanmar, community organ- ing. To cover the last mile toward izers are engaged in the task of Contact tracing identifies and leprosy elimination, we must lev- gathering all their neighbors to be diagnoses people who may have erage and scale proven solutions, tested for one of the oldest docu- come into contact with an infected while also investing in research mented diseases: leprosy. person, which helps toward earli- for improved diagnosis methods. In Dana Toc, 72-year-old wid- er diagnosis. This is one of the ap- The LPEP program is an excellent ow Daw Khin Thein was diag- proaches the Novartis Foundation example of a program that can be nosed in the same way that people is taking to help work toward final scaled and taken to other lepro- have been diagnosed for centuries elimination of the disease. sy-endemic countries, and we are – with a feather. As there is no ex- In 2014, the Novartis Founda- proud of the success it has had. isting reliable diagnostic test for tion and its partners launched the The Novartis Foundation is the disease, a feather is run over leprosy post-exposure prophylax- also working to develop a diag- the skin to detect areas of numb- is (LPEP) program. This program nostic tool, by collaborating with ness, which is indicative of the focuses on interrupting the trans- research partners to develop a nerve damage caused by leprosy. mission of leprosy by ensuring leprosy molecular diagnostic test. Commonly thought to be a dis- all those who may have been ex- The hope is that, once this test ease of the ancient past, lepro- posed are examined and offered a is developed, leprosy can be di- sy continues to affect thousands post-exposure prophylaxis, which agnosed before significant nerve of people each year. Between can reduce the risk of developing damage has taken place and be- 200,000 and 250,000 new pa- leprosy by 50-60%. fore it is unknowingly transmitted tients are diagnosed annually. Since its launch, LPEP has been to others. Thanks to medical advances, expanded to Indonesia, India, Ne- Cases of leprosy have plateaued leprosy can be treated with mul- pal, Myanmar, Tanzania and Sri in the past few years: it is increas- tidrug therapy (MDT) once di- Lanka, while Brazil and Cambo- ingly difficult to make significant agnosed. Not only is MDT ef- dia have introduced similar ap- reductions when diagnosis is so fective at curing leprosy, it helps proaches. We are excited to see difficult. Without an effective di- reduce transmission and prevent this program expand, making pro- agnostic test, we are left to work permanent disability. Since this gress toward interrupting leprosy with the centuries-old technique therapy became freely available transmission. of using a feather. worldwide, there has been a dra- In April 2017, the Neglected But by leveraging interventions matic decrease in annual diag- Tropical Diseases Summit, five that work and continuing research noses of leprosy. Yet it can only years after the London Declara- into developing effective diag- be administered once a diagnosis tion, gave us new momentum to nostic tools, I am certain that we has been made, and as it can take meet the goals outlined by the can reach the final elimination of up to 20 years before patients be- WHO’s Roadmap on Neglected leprosy together. DOLENTIUM HOMINUM N. 90-2016 31

SECOND SESSION ASPECTS OF HUMAN RIGHTS

1. Dignity and the Right to Protection of Health of People with Leprosy

MS. BARBARA A. FREY The Principles and Guidelines nation worldwide, in schools, Director, work places, communities, public Human Rights Program, In December 2010, the Gen- places, religious sites, restaurants, University of Minnesota, eral Assembly of the United Na- hotels, and buses, trains and other USA tions endorsed the “Principles and forms of public transport. Guidelines for the Elimination of To address these violations of Discrimination against Persons human rights and human dignity, would like to extend my thanks Affected by Leprosy and Their the Principles and Guidelines con- Ito the organizers of this impor- Family Members” (“Principles firm and build upon the core in- tant Symposium on Holistic Care and Guidelines”) and encouraged ternational guarantee of non-dis- for People with Hansen’s Disease. “Governments, relevant United crimination, a right based on the We are grateful especially to the Nations bodies, specialized agen- notion of the equality and digni- Pontifical Council for Health Care cies, funds and programmes, oth- ty of each human being, which is Workers, and the Nippon Founda- er intergovernmental organiza- deeply embedded in human rights tion, and its Chairman, Mr. Yohei tions and national human rights law. The Principles and Guide- Sasakawa, for their organization institutions to give due considera- lines set forth the standards of and support for this important fo- tion to the principles and guide- behavior that have been deemed rum. lines in the formulation and im- necessary for States to achieve I am honored to be invited to plementation of their policies and their responsibility to prohibit all speak today on the Dignity and measures concerning persons af- forms of discrimination against the Right to Protection of Health fected by leprosy and their family persons affected by leprosy and of People with Leprosy. From members.” their family members. 2012-15, I served as a member of The Principles and Guide- The Principles and Guidelines the International Working Group lines represented a truly critical have their roots in the UN Charter, on Leprosy and Human Rights, achievement in affirming the hu- by which each Member State has an independent body of experts man rights of persons affected by acknowledged its common faith representing various geographi- leprosy and their family members. in “fundamental human rights, in cal regions and expertise, includ- The international instrument con- the dignity and worth of the hu- ing persons affected by leprosy. sists of two parts: the Principles, man person, in the equal rights of The purpose of the International which restate and recognize the men and women and of nations Working Group (or “IWG”) was most basic human rights that ex- large and small.” The global com- to develop a plan for effective tend to all persons affected by mitment to human rights cannot protection of the human rights leprosy and their family mem- be achieved if the rights of any and human dignity of persons af- bers. The second part consists of particular group of people are fected by leprosy and their family the Guidelines, which elaborate not fully respected and protected. members. Today I would like to in concrete terms the responsibili- The centrality of the principles of briefly describe the international ties of States to promote, protect equality and non-discrimination standards, and present you with and ensure the realization of all in international human rights law our Group’s findings concerning human rights of leprosy-affected and the adoption and endorsement the most effective way to imple- persons and communities. of the Principles and Guidelines ment those standards. I will then Regrettably, as the need for by the UN Human Rights Council explain what these findings mean these Principles and Guidelines and the General Assembly mean for states, civil society and reli- demonstrates, and as many per- that these standards carry authori- gious organizations, and individ- sons affected by leprosy and their tative weight in international law. uals. family members testify, there con- The P&G can be therefore used as tinues to be widespread discrimi- a measure to assess State practice. 32 DOLENTIUM HOMINUM N. 90-2016

The IWG nently from their family, friends Our report emphasized the and pre-disease identities. many actors who must be involved After the adoption of the Prin- We visited the National Hans- in ensuring that the standards in ciples and Guidelines, the Nip- en's Disease Museum in Hi- the PRINCIPLES AND GUIDE- pon Foundation undertook further gashimurayama, Japan, which LINES are carried out. First and action to disseminate and ensure vividly demonstrated the day to foremost are States, which have the effective implementation of day life for residents of the lepro- the primary obligation to respect, these critical standards through- sarium where since 1909 persons protect, fulfill and ensure human out the world by organizing five with leprosy had been removed rights for all. As such, States are regional symposia to learn about from society permanently, result- called upon to modify, repeal or the experience of leprosy-affected ing in a form of social death. As abolish existing laws, regulations, communities and to hold consul- an example of this, the museum policies, customs and practices tations regarding the most effec- featured the distinct monetary that discriminate directly or in- tive means of ending stigma re- currency and fire-fighting equip- directly against persons affected lated to Hansen’s Disease. The ment that was required in the lep- by leprosy and their family mem- first regional symposium – for rosarium as a means to prevent bers. All parts of government, the Americas – took place in Rio any intermingling of persons with including the executive, legisla- de Janeiro, Brazil in 2012, where leprosy and the outside world. ture, and judiciary, as well as lo- the participants recommended At the National Sanatorium cal governments, and institutions the creation of an International Kuryu Rakusen-en located in Ku- under the control of governments, Working Group to study and rec- satsu, Gunma, we spoke with the must act in conformance with the ommend ways to ensure the im- president of the sanatorium resi- Principles and Guidelines. Gov- plementation of the standards of dents’ association, 87-year-old ernments should also take steps to non-discrimination so clearly set Sanshiro Fujita, who had lived at ensure that the rights of persons forth in the P&G. the sanatorium for 67 years. We affected by leprosy and their fam- The International Working also toured the remains of an in- ily members are protected in the Group was chaired by Dr. Yozo humane prison where leprosy pa- private sphere through appropri- Yokota, distinguished professor tients had been incarcerated before ate regulations related to the ac- and internationally-recognized and during the Second World War tions of individuals, groups and expert of international human for their alleged crimes. The pris- private enterprises. The Interna- rights law. The twelve additional on was being excavated by a team tional Working Group recom- members of the IWG, represented of archeologists who were recon- mended that States, therefore, various geographical regions and structing the experience of the de- adopt and carry out their own na- expertise, including persons af- tainees there. A member of the ex- tional plans of action and collect fected by leprosy. The members cavation team explained how there information regarding the actual were from Brazil, Bulgaria, Ethi- had been no roof and in winter it status of implementation of the opia, India, Japan, Jordan, Ku- was like a freezer, so that many Principles and Guidelines. wait, Philippines, Sri Lanka and detainees died from exposure. To assist with that process, the the United States. In Casablanca, Morocco, we International Working Group pre- The IWG held four working were allowed to visit the site of pared a “Suggested Framework sessions over the next three years: the leprosy hospital and meet with for National Plans of Action” for – October 2012, in New Delhi, many of its current and former States to use in their own domes- India residents, who live difficult lives tic contexts. The elements of this – March 2013 in Tokyo, Japan afflicted by stigma and poverty suggested framework include the – August 2013 in Gunma, Japan because of the disease. Despite following: – October 2014 in Rabat, Mo- these conditions, the leprosy-af- – A clear statement of objec- rocco fected community in Morocco, tives The IWG presented its final re- as in other countries, continue to – A timeframe for achieving the port at a regional meeting in Ge- be passionate advocates for their stated objectives neva, Switzerland, one year ago. own dignity. – Cooperation with stakehold- In conjunction with our sub- ers, most importantly with per- stantive meetings, members of sons affected by leprosy the International Working Group The IWG’s Final Report – Law reform, including repeal also had the opportunity to en- of laws that directly or indirectly gage with leprosy-affected com- Based on our study and obser- violate the rights of persons af- munities in most of these sites. vations, the International Work- fected by leprosy and their fam- We toured leprosaria in Japan and ing Group drafted its final report, ily members; and the removal of Morocco, and held deeply mov- proposing that all actors -- states, discriminatory and offensive lan- ing conversations with people civil society actors, and persons guage; who had suffered the health and affected by leprosy – work to- – Provision of remedies, in- social consequences of the dis- gether to eliminate discrimination cluding judicial remedies ease over the course of their life- associated with Hansen’s Dis- – Special attention to women, time. They talked to us about the ease, more commonly known as children, the elderly and other effects of being separated perma- leprosy. vulnerable populations DOLENTIUM HOMINUM N. 90-2016 33

– Rights related to the family, importance of awareness-raising mental offices and reporting back including the right to marry and activities to be carried out by all to a specified international body. raise children, and support for re- sectors of society. In addition to To ensure these measures were unification of family members state actors and the affected com- taken by governments to imple- separated as a result of past poli- munity, the IWG noted that civ- ment the P&G, the International cies and practices; il society groups, including reli- Working Group further recom- gious institutions, have a critical mended the establishment of a The Framework for National role to play in eliminating the follow-up mechanism at the inter- Plans further includes: stigma and raising up the dig- national level that would have the – An emphasis on inclusion and nity of leprosy-affected persons. authority to monitor the actions of participation in the community, States are encouraged to work to- States. Drawing upon the experi- – The rights to political partic- gether with national human rights ence of independent committees ipation, to work, education and institutions, NGOs, civil society of experts that have functioned training. and the media to foster respect to monitor the implementation of – The right to health, including for the rights of persons affected international human rights trea- early diagnosis and prompt treat- by leprosy and their family mem- ties in the UN as well as the In- ment for leprosy, free medication, bers. Civil society organizations ternational Labour Organization’s counseling and rehabilitation. and social institutions, including Conventions and recommenda- – The right to an adequate schools, religious communities tions, the INTERNATIONAL standard of living and social se- and centers of art and culture are WORKING GROUP specifically curity. critical partners in helping to re- recommended that the UN Hu- – And a plan for awareness rais- move the misconceptions associ- man Rights Council request its ing to foster respect for the rights ated with leprosy and in raising Advisory Committee to study and and dignity of persons affected public awareness about the dis- recommend an appropriate fol- by leprosy and their family mem- ease and its impacts. low-up mechanism at the inter- bers. The IWG noted, in particu- national level. We were pleased In addition to States, the In- lar, the critical need for civil so- that, in 2015, the Human Rights ternational Working Group con- ciety and religious communities Council indeed took this impor- sidered the resolution of the UN to raise up the dignity of persons tant step, as you will hear from General Assembly which also en- affected by leprosy by modeling our next speaker, the Chair of the couraged other actors to give due positive language. We noted that UN Advisory Committee on Hu- consideration to the Principles old perceptions of the disease of man Rights, Dr. Obiora Okafor. and Guidelines in implementing leprosy continue to be reinforced The IWG further recommended policies with regard to persons by stigmatizing language. The of- that whatever follow-up mech- affected by leprosy, including fensive term “leper” used to de- anism was created be empow- relevant UN bodies, specialized scribe someone with the disease ered to distribute a questionnaire agencies, funds and programmes, connotes an outcast, sinner or a to States in order to collect data other intergovernmental organi- person who is rejected by others regarding the actual practice of zations and national human rights for moral or social reasons. Such States in implementing the P&G. institutions. terminology contributes to the To assist with this data gathering, In considering the role of non- discrimination that people affect- the International Working Group state actors, the IWG highlight- ed by leprosy face and discourag- prepared a model questionnaire ed, in particular, that persons es those in need of treatment from calling for information with re- with leprosy themselves must be seeking help. The IWG, there- gard to the following topics: (i) central actors in implementing fore, invited religious leaders and basic epidemiological and clini- the PRINCIPLES AND GUIDE- all supportive communities to cal management status of leprosy, LINES. The right of persons af- consider ways that we can model (ii) healthcare, (iii) abolishment fected by leprosy to be actively language that conveys our respect of discriminatory laws, (iv) estab- involved in decision-making pro- for persons with leprosy. lishment of a national committee, cesses is underscored in the Prin- (v) awareness raising, translation ciples and Guidelines with regard and dissemination of the Princi- to policies and programs that di- Next steps for international ples and Guidelines; (vi) report- rectly concern their lives and the action ing to international human rights lives of their family members. bodies, and (vii) adoption of a The affected individuals are pow- In addition to these domestic- National Plan of Action. erful agents of social change who level activities, the International should act, individually and col- Working Group concluded that lectively through their respective the P&G are most likely to be Conclusion local, national and international given effect if States are called organizations to claim and imple- upon to take specific implement- In sum, the 2010 endorsement ment their human rights. ing actions, including conducting of the Principles and Guidelines To ensure effective implemen- studies, collecting and analyzing by the UN General Assembly tation, the International Working data, bringing these instruments represented a significant turning Group further emphasized the to the attention of various govern- point in the recognition of the full 34 DOLENTIUM HOMINUM N. 90-2016

human rights of all persons af- this disease. The Principles and tion of discrimination resulting fected by leprosy and their fam- Guidelines provide the interna- from leprosy. On behalf of the ily members. These standards tional community with a solid IWG, I thank you for your sup- have been welcomed by tens of base from which to work togeth- port and participation in this his- millions of persons who have en- er to ensure the full realization of toric process. dured the stigma associated with immediate and effective elimina-

2. Stigma and Prejudice: the Role of the Nippon Foundation in Tackling Leprosy Discrimination

MR. TATSUYA TANAMI changes: the state has formally tween 1995 and 1999, we under- Executive Director, apologised; a court ruled that the wrote the free supply of multi- the Nippon Foundation, law had violated patients’ consti- drug therapy (MDT) – the cure Japan tutional rights; and the govern- for leprosy – worldwide. We are ment agreed to pay compensation. committed to supporting efforts Nevertheless, we must not for- to cure leprosy and eliminate the get that this policy continued for disease from the world. far too long, that people are still In step with this, in recent years Hansen’s Disease in Japan: living with its consequences, and we have been placing more em- Isolation and Discrimination that society, through ignorance, phasis on addressing the stigma indifference, fear and prejudice, and discrimination that blight the This year marks the twentieth was complicit in allowing an in- lives of people affected by lepro- anniversary of the abolition of Ja- justice to stand unchallenged for sy. We believe this to be an essen- pan’s Leprosy Prevention Law. decades. tial component of our mission to To put it another way, up until achieve a leprosy-free world. twenty years ago a law existed in In particular, we raised leprosy my country requiring leprosy pa- The Nippon Foundation and as a human rights issue with the tients to be taken from their fami- the Fight against Leprosy then UN Human Rights Commis- lies and forced to live in sanato- sion in 2003. With support from ria. Long after the notion that it How does this concern the Nip- the Japanese Government, this was necessary to isolate people pon Foundation? We have al- initial approach to the UN led with leprosy had been discredited, ready heard this morning from eventually to a 2010 UN General we continued to enforce our isola- our chairman, Mr. Sasakawa, but Assembly resolution on ‘Elimi- tion policy, cutting them off from let me add a few details. Founded nation of Discrimination against society. Patients changed their in 1962, we are one of the larg- Persons Affected by Leprosy and names to avoid exposing their est not-for-profits in the world. their Family Members’. Work families to the stigma surround- The foundation is active in many now continues to see that the set ing the disease; families carried humanitarian fields, but from the of principles and guidelines ac- the secret that one of their rela- beginning our founder, Mr. Sa- companying the resolution are tives had leprosy. sakawa’s father Ryoichi, was pas- fully implemented . Lives were destroyed by a di- sionately interested in eradicat- We also sponsor an annual agnosis of leprosy. Even today, ing leprosy. His interest stemmed Global Appeal to End Stigma and twenty years after the law was from a childhood experience: see- Discrimination against People Af- abolished, there are still people ing a young woman in his village fected by Leprosy, which Mr. Sa- who are unable to return to their forced to leave home because she sakawa mentioned in his remarks. hometown, whose relatives refuse was diagnosed with leprosy. He In these efforts, we believe it to acknowledge them, because of determined that one day he would is very important that the voic- the stigma this policy helped to rid the world of this disease. es of people affected by leprosy entrench. Starting in 1974 we have been are heard. For a number of years Let me be clear. Since the abo- the principal donor to the WHO’s now both the Nippon Foundation lition of the law, there have been Global Leprosy Programme. Be- and Sasakawa Memorial Health DOLENTIUM HOMINUM N. 90-2016 35

Foundation have been support- tional effort to erase the stigma heavily engaged in this movement ing the empowerment of people associated with leprosy, this was and we believe this history is wor- affected by leprosy in different enlarged with state funding and thy of world heritage status. parts of the world and providing reopened in 2007 as a national Why do people discriminate platforms for them to make their museum. against other people? Lepro- views known. The purpose of the museum is sy teaches us the answer to this I am thus very pleased that rep- to increase public awareness of universal human problem. Stig- resentatives of people affected by leprosy and of the struggle waged ma and discrimination are born leprosy from some ten countries by people affected by the disease of misconceptions about others are attending this symposium and for the restoration of their digni- based on ignorance and fear. That that we shall be hearing directly ty. It also encourages respect for is why we need conferences such from them. human rights in general and pro- as this one to dispel mistaken no- I said at the start of my remarks motes an end to discrimination tions about the leprosy and tackle that we must not be allowed to and prejudice. the stigma head on. Thus, I would forget the consequences of our There is now a growing move- like to thank the Pontifical Coun- past policy. One of the outcomes ment around the world to preserve cil for making this symposium in Japan of the abolition of the the for what it possible. Leprosy Prevention Law and sub- teaches about the issue of stigma I hope the important messages sequent legal action was the es- and discrimination and the lessons to emerge will reach every corner tablishment of a National Hans- we can learn from efforts to com- of the earth and that our discus- en’s Disease Museum. bat it. The Nippon Foundation, sions here bring us a step closer to In fact, a museum begun by which has been entrusted with op- our shared goal of a world with- people affected by the disease al- eration of Japan’s National Hans- out leprosy and the discrimination ready existed. As part of the na- en’s Disease Museum, is now it causes.

3. Stigma and Toxic Imagery

MR. JOSÉ RAMIREZ, JR groups during my presentation ple science project. He asked his International Association and the pejorative image it por- classmates to rank the things they for Integration, Dignity and trays on the screen of one’s mind. feared the most such as the dark, Economic Advancement - IDEA, The older group mentioned snakes, monsters, fear of failure, USA words straight out of most dic- teachers, clowns, bullies, spiders, tionaries. Words like sinner, out- girls/boys (the opposite sex) and cast, pariah and untouchable. The leprosy (listed last). All of his arly in 2016, I made two pres- younger group was much less dic- peers identified leprosy as the Eentations on the topic of lep- tionary savvy, but still descriptive. thing they feared the most. rosy. The first was to members of They said words like monster, So here you have three genera- an organization known for their cripple, contagious, claw hands, tions forming an image of “leper” contributions to persons in need people without a nose and Fred- and a fear of leprosy, basically of medical care. The average age dy Krueger. Freddy is a character laying stones of negative percep- of the members was probably ear- in a popular horror franchise with tions and attitudes that create ly 60’s. The second group was a lust for frightening and killing stigma. comprised of university students young men and women. His skin How could this outcome have at the undergraduate level. Most is badly damaged from severe occurred among three distinct were likely in their early 20’s. burns and his signature weapon groups so far removed from one I introduced an activity pri- is a glove with knives attached to another in age and backgrounds? or to starting my presentation. I his fingers. In my opinion, the common asked each group to close their At the end of my presentation thread has been religion, and the eyes. Then, I asked them to de- most of the attendees acknowl- use of terminology among all cul- scribe the image in their mind of edged that they had used the “L” tures to create differences, and the “L” word or “leper.” Normal- word in an offensive manner. fear of the unknown. ly, I do not use this word, as even I can add that when my son Knowledge about leprosy is when written in reverse, it spells was in elementary school and at powerful. However, ignorance “repel.” I mentioned this to both age 11 he completed a very sim- about leprosy is more powerful. 36 DOLENTIUM HOMINUM N. 90-2016

This cycle though does not need My mother definitely viewed the ultimate curse placed upon a hu- to continue as all of us here have label of sinner. man being. the opportunity to initiate change. Ironically, on my first well- I have wondered if the curse of This change will not come easy, guarded and pseudo secret visit leprosy might have been in Mi- but it is a battle worth fighting. home, my mother showed me her chelangelo’s mind as he painted Being in the Vatican City during unconditional love. Using color- the Sistine Chapel. The bottom the Jubilee Year of Mercy means, ed tape, I attempted to label a figures look so much like persons to me, that I have come full circle spoon and plate for my use only, with leprosy in advanced stages. on my journey with Hansen’s dis- as a form of protecting the fam- I have also thought about what ease. Forty-eight years ago I was ily. The Carville staff had not ex- curse the priest at Carville’s Sa- diagnosed with leprosy at Mercy plained to me and I did not under- cred Heart Chapel might have im- Hospital in Laredo, Texas. Even stand that my level of contagion agined when he would use two though my family, friends and was non-existent after commenc- chalices to administer communion girlfriend thought that my diag- ing treatment with Dapsone and – one for staff and another for pa- nosis meant upcoming death, the experimental medications of Tha- tients. I have no regrets from hav- Sisters of Mercy nervously tried lidomide and B-663, now called ing had kneeled on the staff side of to reassure all that this was not so. Chlofasimine. She grabbed the the alter and forced him to use on- Nervously, because my mother plate from my hands, forcefully ly one chalice, and forever break- immediately recognized the usu- throwing it to the floor, smashing ing one of the branches of stigma. al connection to leprosy-sin. She it to pieces. In tears she screamed However, my action had a counter believed, and shared with me in “You are MY son, I love you! action. I received the silent treat- inconsolable tears, that God was Please don’t ever think that we ment for months from my peers punishing her, through me, for will abandon you.” Since then, I and staff. It is very challenging to her sins. I simply could not en- always think of my mother when I break the status quo as the Tree of vision my saintly mother possibly see a plate in front of me. Having Stigma has strong branches. being a sinner. I became petrified a plate with food in front of me Roads traveled by the curse of with anger because I could not obviously is not always a good leprosy have been filled with much understand why God was being so thing! sorrow. The curse has led to the cruel to my mother. This cruelty It was 38 years after my diag- denial of basic human rights; death included her witnessing a priest nosis when Pope John Paul II de- by fire, bullets or loneliness; a life- administer the last rites to me pri- scribed persons affected by lepro- time of separation from family syn- or to being placed in a hearse en sy. He said “they are my brothers onymous with incarceration; deni- route to the national leprosarium and sisters” during mass at St. Pe- al of all rights including marriage; in Carville, Louisiana- My moth- ter’s Square. Things changed for separation from children or a fetus er felt great sadness for decades my mother when I shared with aborted if pregnant; being chained asking the question “why?” simi- her his words. She was in ad- to an ostracized community; con- lar to a female Barabbas. vanced stages of Alzheimer’s, finement to very cold or hot rooms The initial diagnosis of lep- but she was able to briefly regain as a form of punishment; forbidden rosy can immobilize physically, her senses. She said, Ya me puedo to live or travel with others not af- emotionally, and spiritually. This morir con una alma limpia-Now I fected; stripped of an identity; and paralysis affects the person diag- can die with a clean soul. much much more. nosed and impacts the extended I was not the first to be attacked So, the toxic combination of family. Symbolically, most of by stigma. Stigma can be traced historically believing that leprosy us affected by leprosy have been back 4,000 years as evidenced by is a curse, and inhumane actions transported in a hearse on a jour- anthropologic findings. They dis- which continue to perpetuate fear ney to ostracism. This journey be- covered that persons affected by provide the fuel to explode stigma comes void of the laughter, cele- leprosy were often buried in seg- across borders, cultures, moun- brations, and milestones of loved regated graves. These 40 centu- tains, oceans and faiths. This ones. For every person affected ries also represent over 100 gen- makes it possible for stigma to by leprosy, as many as ten others erations of my brothers and sisters navigate complex social systems are impacted. For me it was my living a life of rejection and fear. that I call the “Eye of Exclusion.” six sisters, six brothers, parents, They were labeled “the living This system, that has made 29 aunts and uncles, girlfriend dead” while alive, and then dis- such a harsh and negative impact and many friends. I was institu- robed of their dignity after death. on stigma includes economics, tionalized for seven years after I Throughout the ages, this loss housing, health, politics, educa- was driven 750 miles in a vehicle of dignity has taken on a unique tion and the electronic, print and used to transport the dead to their portrait of emotional and physical social media. These affect the grave. At least now I know what trauma. Persons outside of this psyche of society, and the well- my final ride will feel like. room have limited knowledge being of the person affected. This painful experience with about the paths traveled by per- On a daily basis there are sto- my mother, Rosa, was my intro- sons affected by leprosy. How- ries about persons affected by duction to stigma. I define stigma ever, historically and in contem- leprosy challenged and labeled by as “an act of labeling, rejection, porary times, many have believed individuals, groups, and potential or unexplained fear of a person.” that the diagnosis of leprosy is the employers within the “Eye of Ex- DOLENTIUM HOMINUM N. 90-2016 37

clusion” because of leprosy relat- lead to a greater level of empow- 4. Include women affected by ed myths. The obvious myths are erment. Collaboration with per- leprosy in all aspects of diagnosis, the ones most labeling, i.e., tox- sons who can share their personal treatment, advocacy and leader- ic bacilli in our bodies will “de- journey are able to attack the sys- ship. Even though leprosy affects form and cripple” us to forever be temic barriers which contribute twice as many men as women, a “victim or sufferer,” a “patient.” to stigma. Personal journeys are they experience a much greater Society does not acknowledge the equivalent to being in the trench- level of stigma. fact that while we may lose feel- es while stigma bombs have been 5. Adopt a statement of collabo- ing in our limbs, pain in our soul falling all around them. They see ration and strength such as “See is never ending. We are not less efforts that work, and are able to the whole person, not the toxic competent than someone without contribute to the lessening of trau- images” and share with ALL me- the disease. Our minds do not ma and stigma for others newly di- dia, in particular social media. stop functioning. We are a “pa- agnosed. In essence, applied em- 6. Collaborate on establishing tient” ONLY while under the care powerment or self-empowerment one unified World Leprosy Day. of a physician or therapist. I re- become a powerful tool to rebuild Collaborations with common call as recently as the last Interna- the lives dismantled by stigma. themes such as STOP STIGMA tional Congress on Leprosy being The Law of Silence is overpow- or STIGMA HURTS can enhance called a “patient,” and receiving a ered by The Law of Knowledge. the education of young minds. shocked response when saying, “I ILEP will soon embark on a Stigma is a form of , so am not a patient!” project to update existing data on when children live in environ- The implosion also impacts the written laws that allow discrimi- ments where degrading terminol- persons’ extended support system natory practices against persons ogy is used, they learn to fear and which include family, friends and affected, laws that disregard the ostracize those they label. When work colleagues. Again, rejection negative results –stigma. Govern- children live in an accepting envi- and fear surface to the top, deny- mental insensitivity and commu- ronment, they learn to understand ing dignity and respect for my nity attitudes, intentionally or un- the inappropriateness of pejora- brothers and sisters, and me. intentionally, join forces to cause tive terminology and labels. The primary reason that the much harm to persons locked up 7. Stand up and be heard when “Eye of Exclusion” and stigma are in a cycle of stigma. This cycle degrading terminology is used so effective is because of what I can traumatize one so severely and correct the offender. have witnessed and call the “Law that they cease seeking treatment of Silence.” This law refers to the and support. This is why the In closing, I would like to share unwillingness of society in general spread of the highly toxic attitude my personal goal on the issue of and many in leadership in particu- of stigma must be stopped. stigma. I would like to evict from lar, to speak out-yell out- against So, how can this be possible? society the actions, practices and the injustices associated with labe- Some generic recommendations laws which contribute to stigma. ling, rejection and fear which make which I consider hallmarks of col- If my mother were alive today, I up stigma tattooed in imagery. laboration include: would want her to know her tears Leadership means being in a po- 1. Create a standard definition now would be for joy as I have sition to help others become better of stigma and cease the anoint- traveled the world to meet many in the world of leprosy, better at ment of persons affected as hav- more of my siblings. She would advocacy and diplomacy. In parts ing self-stigma and creating an also be elated that one of our own of the world where stigma flour- image of “victim”. With 4,000 is a saint... Saint Damien. I am not ishes almost as certain as the sun years of toxic imagery, how can a patient. I am not the only sinner rises from the East, galvanizing we be blamed for stigma? on earth. I am not a “leper”. forces to extinguish stigma should 2. Spawn creative reforms such I likely caught leprosy after be a top priority for all of us. This as funding a Leadership Stipend eating the meat of a nine band- priority can be conceived and for persons affected by leprosy. ed armadillo when I was young. birthed via the creation of a lead- Leadership is not learned by os- I consider this unique looking ership stipend. I will elaborate on mosis but by mentoring. mammal as part of my extended this later in my presentation. 3. Kick down the doors to the family and am proud to forever The opposite of the “Eye of board rooms and paid positions to be linked to the word zoonosis. Exclusion” is “The Eye of In- become a part of the empowerment I am, José Ramirez, Jr., and my clusion.” Research on other ill- process and truly foster an era of labels include son, brother, hus- nesses and conditions repeatedly collaboration. Remember that our band, father, uncle, advocate, so- show how engaging persons in brains and hearts do not stop func- cial worker, presenter at the Vati- decision-making protocols can tioning because of leprosy. can City and much more. 38 DOLENTIUM HOMINUM N. 90-2016

4. Access to Education, Work and Marriage

PROF. YOZO YOKOTA Universal Declaration of Human and are entitled, on an equal ba- President of the Center Rights adopted on 10 December sis with others, to all the human for Human Rights Education 1948 by the UN General Assem- rights and fundamental freedoms and Training, bly. This document was initial- proclaimed in the Universal Dec- Japan. ly understood as a recommen- laration of Human Rights”. In datory, or legally non-binding, other words, these Principles and instrument because the General Guidelines are the application of Assembly was not a world legis- the provisions of the Universal lature. However, over the years, Declaration to the concrete cases Introduction through consistent reference and of persons affected by Hansen’s endorsement by various interna- disease and their family members. First of all, I wish to express my tional human rights treaties and As such, they have a certain legal heartfelt gratitude to the organiz- conventions adopted and ratified weight which emanates from the ers of this historic conference on by large numbers of States, and binding nature of the Universal various aspects of leprosy or, more even by some national Constitu- Declaration. appropriately, “Hansen’s disease”. tions, many international human I am particularly thankful to the rights experts today argue that the Pontifical Council for Health Care Universal Declaration has gained 2. The Right of Access Workers and the Nippon Founda- the status of a legally binding hu- to Education tion. It is my great pleasure and man rights instrument. For this honor to address its second ses- reason, the UN-published volume The right of access to education sion which focuses on Hansen’s containing various human rights is a human right that is important disease and human rights. treaties and conventions lists the in itself but it is also fundamen- As regards the many catego- Universal Declaration at the top tal because without adequate ed- ries of human rights, from civil of all human rights instruments, ucation people cannot fully enjoy and political rights to econom- naming it the “International Bill many other categories of human ic, social and cultural rights, that of Human Rights”. In my pres- rights, such as the right to work, have been gravely violated in the entation, I will refer to it as “the the right to property, the right to case of many persons affected by Universal Declaration” for short. political participation, the right to Hansen’s disease and their fami- The second document that I health, the right to defend one’s ly members, I would like to shed will use in this presentation is the interests, the right to lead a satis- particular light on three funda- “Principles and Guidelines for factory spiritual life, and the right mental social rights, namely (a) the Elimination of Discrimination to engage in cultural activities. the right of access to education; against Persons Affected by Lep- This is why the Universal Dec- (b) the right to work; and (c) vari- rosy and their Family Members”, laration has a detailed provision ous rights relating to marriage, or “the Principles and Guidelines” in Article 26. Paragraph 1 of Ar- the family and social services. I for short. This document was ticle 26 begins by clearly stating will do so because these rights are adopted by the UN Human Rights that: “[E]veryone has the right to basic to maintaining human dig- Council in September 2010 and education”. Because education nity, physical integrity, the search then endorsed by the General As- is very important and fundamen- for spiritual fulfillment and the sembly in December of the same tal, the same paragraph goes on enrichment of one’s life, yet they year. Strictly speaking, these Prin- to say that: “[E]ducation shall be have been broadly restricted, or ciples and Guidelines are not le- free, at least at the elementary and even denied, in the case of most gally binding. However, many of fundamental stages”. It also lays persons affected by Hansen’s dis- their provisions are based on the down that “[E]lementary educa- ease and their family members. Universal Declaration, applying tion shall be compulsory”. it more specifically to the actual In spite of the importance and and concrete situation of persons fundamental nature of the right 1. Two Important Documents affected by Hansen’s disease and of access to education, many per- on which this Presentation their family members. The rela- sons affected by Hansen’s disease is Based tionship between these Principles and their family members, par- and Guidelines and the Universal ticularly children, have been de- Before coming to the three cat- Declaration is well summarized prived of the enjoyment of this egories of human rights that I will in Principle 1 of the Principles basic human right. focus on, I should mention two and Guidelines. This reads: “[P] For instance, children found important relevant documents of ersons affected by leprosy and to be infected with Hansen’s dis- the United Nations on which my their family members should be ease have in most countries been presentation is based. One is the treated as people with dignity forcefully hospitalized and made DOLENTIUM HOMINUM N. 90-2016 39

to stay there for life. They have when one of their family mem- family behind him. In his case, he been separated from their fami- bers is found to be infected. had to change his name and iden- lies and friends and have lost the This is the reason why Guide- tity so that his family would not opportunity to attend schools and line 7 of the Principles and Guide- risk discrimination and ostracism engage in studies. Even if they lines affirms that: “[S]tates should in the community in which they may not have been infected with encourage and support opportu- lived. Hansen’s disease themselves, nities for self-employment, the A Japanese lady who had been children whose family members formation of cooperatives and forcefully hospitalized in a sana- were found to be infected have vocational training for persons af- torium at the age of twelve cried commonly faced serious dis- fected by leprosy and their family every day, asking herself why she criminatory treatment at school members, as well as their employ- could not go home and live with that hinders them from benefiting ment in regular labor markets”. her family. She showed me a let- from normal learning opportuni- The right to work is fundamen- ter she had written to her mother ties. For instance, the son of a for- tal for everyone when it comes to at that time. It read: “Dear Mom, mer Ethiopian patient with Hans- leading a normal and meaningful please come to see me and bring en’s disease who was not infected life with dignity, as well as sus- me home. I will be a good girl. related that in classroom at school taining a happy and harmonious I would do everything you tell he was given a separate table and family. Article 23 of the Universal me. I only want to be with you at chair away from the rest of his Declaration, therefore, states that: home”. She was released from classmates, and at lunch time he “[E]veryone has the right to work, the sanatorium only years lat- was not allowed to eat at the same to free choice of employment, to er when the Leprosy Prevention table with his friends. As a result just and favorable conditions of Law requiring forceful hospital- of such treatment at school, most work and to protection against un- ization of Hansen’s disease pa- classmates avoided close contact employment”. Nevertheless, per- tients was repealed. While in the with him and he was totally iso- sons affected by Hansen’s disease sanatorium she was sterilized and lated. This created an adversar- and their family members have therefore could not have children. ial atmosphere and harsh condi- been deprived of the opportunity Here is another story about a tions for this boy in his studies at to enjoy this fundamental human Chinese man who had been hos- school. During a decade of visit- right. pitalized in a Hansen’s disease ing Hansen’s disease hospitals, Persons affected by Hansen’s sanatorium for over thirty years. sanatoria and communities in var- disease and their family mem- He was very happy when finally ious countries, I have heard very bers should enjoy equal opportu- released after the change in legis- many testimonies that children of nities to engage in “decent work” lation. When he reached his dear persons affected by Hansen’s dis- and should never be discriminat- “home-sweet-home”, which he ease had experienced similar dis- ed against at the level of employ- had long dreamed of doing, he criminatory treatment, sometimes ment, wages, working conditions rang the doorbell, noticing his even bullying, at school. or promotion because of Hansen’s father’s face, which had grown This is why Guideline 8 of disease. old, through a door window. The the Principles and Guidelines next thing he expected was for the states unequivocally that: “[S]ta- door to be opened and a big smile tes should promote equal access 4. Rights Relating to Marriage, of his father happily welcoming to education for persons affected the Family and Social back his beloved son. However, by leprosy and their family mem- Services what happened in reality was that bers”. All States must act imme- the door window was closed again diately to carry out the task de- The most often cited discrimi- and the door was not opened. He manded of them in this Guideline. nation connected with Hansen’s rang the bell again and again, but disease involves rights relating there was no answer. He had to to marriage, the family and so- recognize that he was not wel- 3. The Right to Work cial services. An Indian lady, for come at home; even his father did example, complained that her en- not welcome him. When he told The right to work is another cat- gagement was cancelled when it me this story, he, a man of over egory of social rights that many was found out that her brother sixty, cried and cried, and he had persons affected by Hansen’s dis- had been hospitalized for lepro- to stop talking several times be- ease and their family members sy treatment. Another Indian la- cause he was unable to control his have generally been deprived of. dy told me that after having led a overwhelming emotion. In many countries, a person who happy married life with her hus- In Brazil, children of persons is found to be infected quite com- band and after having had three infected with Hansen’s disease monly loses their job because of a children she was subject to di- had to be separated from their fear of possible infection by other vorce because one of her family parents and placed in the care workers, although such fear has members had been found to be of stepparents, usually far away been demonstrated to be scientifi- infected with Hansen’s disease. A from their hometowns, without cally and medically unfounded. It Japanese man who had been diag- knowing who their biological is usually the case that even un- nosed with Hansen’s disease was parents were. Finding out the nat- infected persons lose their jobs forcefully hospitalized and left his ural parents of children who were 40 DOLENTIUM HOMINUM N. 90-2016

forcefully separated because of to draw the audience’s special at- bus to go home because the driv- Hansen’s disease is now a politi- tention to the provision of Article er knew that he had just come out cal issue in Brazil. 25, paragraph 1, of the Univer- of the Hansen’s disease sanatori- Such cases of infringement of sal Declaration. This reads: “[E] um. An Indian lady told me that rights relating to marriage and veryone has the right to a standard she was denied access to a Hindu the family should be immediate- of living adequate for the health temple because of her history of ly stopped and any legislation al- and well-being of himself and of Hansen’s disease. lowing such serious violations of his family, including food, cloth- human rights must be repealed so ing, housing and medical care and that people will no longer suffer necessary social services, and the Conclusion sorrow as a result of forceful sep- right to security in the event of aration from their families. unemployment, sickness, disabil- Persons affected by Hansen’s This is why Principle 2 of the ity, widowhood, old age or other disease and their family members Principles and Guidelines states: lack of livelihood in circumstanc- have long suffered from discrim- “[P]ersons affected by leprosy es beyond his control”. Many per- inatory legislation, policies and and their family members should sons affected by Hansen’s disease practices based on a misunder- have the same rights as every- and their family members did not standing of this disease and the one else with respect to marriage, enjoy all these rights of access to stigma associated with it. They family and parenthood”. various forms of social protection have been deprived of all the hu- In addition, Guideline 4 of the and services. In almost all coun- man rights and fundamental free- Principles and Guidelines further tries, persons affected by Hansen’s doms proclaimed in the Univer- stipulates that: “[S]tates should, disease and their family mem- sal Declaration; in particular, the where possible, support the re- bers have been marginalized and right of access to education, the unification of families separated forced to live well below accept- right to work, and the rights re- in the past as a result of policies able living conditions and without lating to marriage, the family and practices relating to persons the adequate social protection pro- and social services, which are ex- diagnosed with leprosy”. In oth- vided for in this Article. tremely important in themselves er words, the UN Principles and There have been other types but also very fundamental to the Guidelines not only prohibits fam- of denial of the right of access to enjoyment of other human rights ily separation because of Hansen’s social services such as the use of and fundamental freedoms. This disease but also require States to public transportation systems or situation should be corrected im- assist in their reunification. entering a religious site. The Chi- mediately and the necessary rem- As regards the rights relating nese man whom I referred to ear- edies should be provided to the to marriage and the family, I wish lier was not allowed to get on a victims as soon as possible. DOLENTIUM HOMINUM N. 90-2016 41

FRIDAY 10 JUNE

ROUND TABLE The Contribution of the Church and Other Faith Communities

1. The Catholic Church: the Results of the Survey of ‘The Good Samaritan’ Foundation on the Activities and the Projects of the Catholic Church for Care of People with Hansen’s disease

DR. CLAUDIA DI LORENZI the United States of America, Eu- that was received from the dioces- ‘The Good Samaritan’ rope, Chile and Ghana, cases of es, people with Hansen’s disease Foundation, leprosy were not reported. live in conditions of separation the Holy See Looking at recent cases, over from the rest of society because the last five years the number of of prejudice about the possibility new cases has undergone strong of contagion and the difficulties e would now like to describe oscillations in various countries, of a cure that persist even though Wthe results of the survey car- moving from no new case (as hap- the scientific evidence – as the ried out by ‘The Good Samaritan’ pened in the diocese of Yokohama papers given yesterday indicated Foundation’ on the projects, cen- in Japan, or in the diocese of Tai- – go in the opposite direction. In tres and initiatives connected with pei in Taiwan) to about 2,000 new many cases, people with leprosy the Catholic Church in the world cases in Argentina. In general, a live in their homes with their fam- that are involved in the fight high number of cases were record- ilies but often they are distanced against Hansen’s disease. ed in the diocese of Guayaquil in and stigmatised by their own fam- Some months ago we drew up Ecuador (426), in Tanzania with ily relatives. The most fortunate an ad hoc survey tool, a question- 799 cases in its 34 dioceses, and are received into leper colonies or naire which many of you have re- in Bangladesh where in the two hospitals and treatment centres. ceived and which we brought to dioceses alone of Dinajpur and But there is a significant number the attention of all the Bishops’ Khulna there were 1,289 cases. In who live in conditions of extreme Conferences in the world and all Tanzania there was a higher num- poverty and total marginalisation, apostolic nunciatures. ber of patients with the disease without shelter or drinking water We received replies from over under the age of fifteen amongst or health care, whether special- 760 dioceses of all the continents the new cases, 135, with 50 such ised or even basic in character, of the world and the results are, cases in Bangladesh. and they are forced to live where in summarising form, as follows. In addition to numerical data, they can, for example in railway Cases of leprosy were encoun- we were also interested in under- stations, parks or the street. tered in 187 dioceses (24.6%), standing the conditions of life of In some hospitals they are de- prevalently in Asia and Africa, people with this pathology, where nied treatment and resort is made with a few cases in South Ameri- they live, and the health-care ser- to treatment at home. If the per- ca and Australia. In contrary fash- vices to which they have access. son with leprosy is an immigrant ion, in 573 dioceses (75.4%), in In general, according to the data in a reception centre, in some 42 DOLENTIUM HOMINUM N. 90-2016

countries such as Australia he or In all cases national and local ceptance of people with Hansen’s she does not have access to the public health-care institutions disease, but in general a great deal care and treatment of the national treated people with leprosy free remains to be done because in the health service. of charge, and judgements about majority of cases the prevalent at- People with leprosy – but the quality of the services and the titude is that of indifference or re- whose state of health is not grave help provided were on average jection. – who look for a job are often dis- satisfactory. One is dealing here To come in specific terms to the criminated against: in Ecuador, in with services involving trauma- contribution offered by the Cath- the diocese of Babahoyo, they are tology, cardiology, physiothera- olic Church, almost all the coun- badly paid and have difficulty in py, general medicine, laboratory tries surveyed reported activities, finding a full-time job. analyses, the treatment of wounds projects, and services made avail- On the other hand, there are al- and ulcers in particular, and – be- able by the local Churches. Where so situations where the patients cause in many cases the age of the initiatives were not indicated this live freely, are independent and patients is high – forms of treat- was because of a lack of econom- receive adequate medical care ment for illnesses typical of old ic resources or – as is the case in and treatment, as happens in Ja- people as well. And then there is Australia – because the incidence pan, in the diocese of Yokoha- activity involving prevention and of this disease is so low that ac- ma, or in the diocese of Harare early diagnosis, the distribution of tion by the Catholic Church is not in Zimbabwe, where people with medical products, food, clothes, required. leprosy are helped by a group of shoes, and also the availability of In concrete terms, the Church Franciscan friars. housing and shelters. is present as regards this chal- As regards the primary needs of However at times access to lenge through the offer of varie- people with leprosy, the answers care and treatment is undermined gated services which range from were rather homogenous. Here one by other factors and there were the treatment of patients in cen- is dealing with high-quality medi- concrete obstacles to this in half tres and hospitals of dioceses to cal support, drugs and medicines, of the countries contacted by the the supply of food, clothes and laboratory examinations, food, survey. Amongst the elements shoes, and then activities involv- clothes and shoes for the poorest that compromise continuous and ing counselling, health-care edu- of them, and then accommodation, effective care for people with lep- cation, and initiatives for the so- a healthy diet, general hygiene, rosy there are: a low level of pre- cial reintegration of patients who and the sacraments from vention and monitoring; a lack have been cured of the disease. to communion and from confirma- of continuity in treatment and of Local Churches do not fail to tion to the anointing of the sick. formation and education about provide spiritual assistance to And then there is also psychologi- the disease; and prejudice, dis- their patients, as well as the ad- cal and spiritual assistance. crimination, indifference on the ministration of the sacraments In the same way, people affect- part of the community to which (baptism, communion, confirma- ed by leprosy need to overcome people with leprosy belong and tion, the anointing of the sick) and the stigma that has afflicted them their families, with these people Holy Masses, and usually there is and to enter into contact, see and suffering the affliction of stigma a total taking of responsibility of communicate ‘normally’ with and marginalisation. them. In Zimbabwe a communi- other people in society without A special case is Japan where ty of Franciscan friars and priests any form of discrimination. And an old law for the prevention of takes care of people with leprosy also to find satisfaction in a job leprosy fostered the rooting of a and lives with them. that takes them out of their ‘ring social prejudice and discrimina- There are hospitals and health- fence’ and enables them to be- tion. From the diocese of Douala care centres connected with dio- come ‘generators of income’. If it in Cameroon we learnt about the ceses. In Haiti there is the Derma- is children who have this disease, absence of health-care personnel tological and Infectious Diseases then a service of distance edu- who were trained in, and capable Institute (the Fame Pereo Institute cation is required, that is to say of carrying out, an early and cor- for Lepers), which was found- schooling at home. rect diagnosis, of drugs and med- ed by Cardinal Leger, as well as As regards the subject of access icines that were not accessible, a hospital named after him and to care and treatment, in almost and in substantial terms a lack of managed by the Missionary Sis- all the countries drugs and medi- interest in the fight against lepro- ters of Christ the King which is re- cines against leprosy were avail- sy which has been declared to be sponsible for a programme for the able (except in Ecuador and some eliminated. In Tanzania it is the fight against leprosy and care for regions of India), even though in excessive distance between peo- people with leprosy. In Cameroon, terms of quantity they are insuffi- ple’s homes and the centres of the diocese of Douala manages cient, and the same applies to the treatment which obstructs diag- the leper colony of Dibamba. In dioceses. On the whole, these are nosis and treatment. Korea, the Archdiocese of Daegu free drugs and medicines or ones As regards the attitudes of local runs the Skin Care Hospital whose that are readily affordable. Only communities towards people with origins go back to a hospital that countries such as Zimbabwe and leprosy, activities involving infor- was specialised in combatting lep- Bangladesh reported prohibitive mation and sensitisation have in rosy. In Tanzania there are four costs for such medical products. some cases fostered greater ac- centres connected with the dio- DOLENTIUM HOMINUM N. 90-2016 43

ceses: the Nazareth Leprosy Cen- managed by the Combonian mis- surgical operations, assistance tre (in the diocese of Ifkara); the sionaries together with the Jesuits. for patients and their families, the Busanda Camp and the Kolandoto Some dioceses are involved in raining of health-care workers, Camp (in the diocese of Shinyan- activities that are directed towards and information and education for ga); the Kabanga Referral Hos- diminishing prejudice and fund the local population. pital (in the diocese of Kigoma); gathering to provide econom- Almost everywhere there is a and the Prevention of Disabilities ic support to the poorest leprosy lack of economic resources and a and Reconstructive Surgery Cen- sufferers. There is no absence of low level of information amongst tre (at the Turian Hospital). These study meetings, activities involv- the local population, and often are centres which offer diagnoses, ing teaching, and the offer of oc- there is a lack of medical and treatment, nursing, reconstructive cupational activities directed to- nursing staff, institutions and surgery, medication, food, shoes, wards the reintegration of people equipment, and also difficulties at clothes, and admission. The dio- who have been cured of leprosy. the level of logistics. cese of Harare in Zimbabwe is re- For the most part these are pro- Even though in the majority of sponsible for the Mutemwa Lep- jects involving individual dioces- cases these projects form a part of rosy Catholic Care Centre. In es which are long-term (over five diocesan programmes for pasto- Bangladesh, the diocese of Di- years in length) and directed to- ral care in health, the level of in- najpur has created the Centre for wards the general population irre- volvement of the activities of the Leprosy Control. In Taiwan, the spective of age band, and whose Church community is at an aver- diocese of Taipei created the St. objectives are activities involving age level and is certainly capable William Catholic Church which is prevention, medical treatment, of improvement.

2. The Contribution of Hinduism

DR. P.K. GOPAL With approximately one bil- designed to bring human beings President of Integration, lion followers, Hinduism is the and together and it is infused Dignity and Economic world’s third largest religion in with symbolism to express the Advancement of People population terms, and the major- ideas and beliefs of Hinduism. Affected by Leprosy - IDEA, ity religion in India, Nepal, Mau- Two factors which have been India ritius and Bali (Indonesia). common to all traditions and Hinduism prescribes eternal have survived many crises are the duties such as honesty, refrain- family and religion. These were induism is the religion of the ing from injuring living beings the decisive factors that played a HHindus which has been su- (ahimsa), patience, forbearance, role in shaping attitudes to lepro- preme in India. It is the oldest of self-restraint and compassion. sy and practices connected with it all religions. It was not founded The term Hinduism was intro- in society. The family as a basic by a prophet. No date can be fixed duced into the English language social unit played a crucial role in for the establishment of Hindu- in the eighteenth century to denote uniting and supporting its mem- ism. Hinduism was not born from the religious, philosophical, and bers and giving them a social the teachings of particular proph- cultural traditions native to India. identity. Like the family, religion ets. Hinduism is also known by Swami Vivekananda was a key also pervaded all spheres of life the name ‘Sanatana-Dharma’ figure in introducing Hinduism to as a major force behind all social which means eternal religion. Europe and the USA, raising in- decisions and activities. This sce- Hindu scriptures are the oldest in ter-faith awareness and making nario has not changed much in the world. The Vedas are the foun- Hinduism a world religion. spite of all global modern devel- dational scriptures of Hinduism. Hindus believe that all living opments. They hold that the Vedas are with- creatures have a soul. The soul is out beginning and without end. believed to be eternal. They wor- I am proud to belong to a reli- ship the Supreme Being various- Punishment by God gion which has taught the world ly as Vishnu, Brahma, Shiva or the Divine Force both tolerance and universal ac- Shakti, depending on the to ceptance. We believe not only in which they belong. People are the same all over the universal : we also ac- A Hindu temple is a house of world in their treatment of peo- cept that all religions are true. god(s). It is a space and structure ple affected by leprosy. For sev- 44 DOLENTIUM HOMINUM N. 90-2016

eral centuries these people were elaborate commentaries on ‘why rosy Elimination, Mr. Sasakawa discriminated against, segregated people suffer’. The theory of Kar- not only visits leprosy-affected and isolated from society. In In- ma is propounded to explain all people at leprosy sanatoriums and dia these segregated people live kinds of suffering. Karma implies colonies around the world. He al- in nearly 800 leprosy colonies that if one has committed mis- so solicits the support and coop- all over India. The Christian mis- deeds in previous births, one must eration of Heads of State and the sionaries were pioneers in starting inevitably bear the consequences. media wherever he goes in or- leprosy hospitals to provide vari- Leprosy suffering was considered der to spread correct knowledge ous services to leprosy patients a punishment for the sins of previ- about leprosy and to deliver the and promote their wellbeing. We ous births and one is called upon message that leprosy is curable, all know the service of Father to accept it as a divine retribution. that treatment is free and that so- Damien who went to the Molokai I am happy that in this Jubi- cial discrimination must find no Islands to mitigate the sufferings lee of Mercy the subject of this room. of people with leprosy on that is- symposium is: ‘Towards Holis- In the year 2003 Mr. Sasakawa land. He lived with them. tic Care for People with Hansen’s took the initiative of approaching There is a belief in divine pun- Disease that Respects their Digni- the Office of the UN High Com- ishment in all religions and peo- ty’. The dignity of people affect- missioner for Human Rights to ple tend to accept the condition ed by leprosy and their empower- report leprosy-based discrimina- of leprosy-affliction as something ment depends upon the attitude of tions. In 2005 and 2006 he worked they deserve. society. If you want to give dig- vigorously with the UN Human India preserves many old scrip- nity to them you should address Rights Council on this issue. tures. There are references to the them with dignified terminology The UN Human Rights Council disease of leprosy in the Sanskrit as people who are affected by lep- in September 2010 unanimously hymns of the Atharva Veda which rosy. My request is never to call passed a resolution in favour of was composed before the first mil- them a ‘leper’. In no other disease the elimination of discrimination lennium BC. Those who indulge is a person called by the name of against people affected by lep- with prostitutes, commit adultery the disease. Mahatma Gandhi was rosy and their family members. and lead an impure life contract the first person to advise the world Later the UN General Assembly leprosy. Kautilya’s Arthashastra ‘not to use the word leper’. Help formally adopted this resolution. mentioned leprosy in 1500 BC. these people to develop in the so- This was truly a historic event It disqualified a leprosy-affected cial and economic conditions that and it was made possible by the person (among other categories exist. The Hindu organization persistent efforts of Mr. Yohei Sa- of handicapped people) from in- Ramakrishna Mission provides sakawa. heritance but entitled him or her social and economic rehabilita- ‘, bigotry, and its to maintenance by his or her fam- tion services to leprosy- affected horrible descendant, fanaticism, ily. Another scripture, Dharma- people in India. have long possessed this beautiful shastra (the Hindu doctrines of The success of a leprosy con- earth. They have filled the earth righteous living), says that suicide trol service programme in India with violence, drenched it of- by leprosy patients was permitted will largely depend on how much ten and often with human blood, by many Hindu religious books. it can draw on the traditional re- destroyed civilisation and sent The scripture Matsya Puran said sources of society. In a country whole nations to despair. Had it that Samba, the Son of Lord Shri like India, where religion per- not been for these horrible de- Krishna, was cursed by his father vades all domains of life, there is mons, human society would be with leprosy because he was vain. nothing wrong if leprosy services far more advanced than it is now’ Samba was cured by worshipping can access the immense resourc- (Swami Vivekananda). Lord Surya, the Sun, who is the es of religious institutions. Many If there is no stigma and dis- source of all energy and the heal- NGOs are now trying to involve crimination, leprosy-affected peo- er of skin diseases. We can see the spiritual leaders of different ple can live with dignity. I strong- this in Hindu Sun temples. In Ma- faiths in social and developmen- ly believe that all uncharitable habaratham Krishna cursed Ash- tal programmes. feelings of discrimination against wathama with a terrible leprosy Mr. Yohei Sasakawa has spent leprosy-affected people will come that would haunt him for 3,000 almost forty years in an effort to an end if we all work together years. The scripture Garuda Pu- to eliminate leprosy as a public to eradicate leprosy. rana says that a murderer of a health problem. This has been his virgin will become a leprosy suf- life’s work. He has worked tire- ferer. Sushrut samhita in 600 BC lessly with the World Health Or- gives s reasonably good account ganization, governments of en- Note of the clinical symptoms and demic countries, and international Material was collected from the Acworth treatment of leprosy. and local NGOs. As the WHO Leprosy Museum in Wadala, Mumbai. Web Hindu scriptures have provided Goodwill Ambassador for Lep- address: www.theacworthleprosymuseum.org DOLENTIUM HOMINUM N. 90-2016 45

3. Hansen’s Disease: the Contribution of Buddhist Communities

DR. PHRAMAHA have differently: “Monks, you Province and it gradually expand- BOONCHUAY DOOJAI should not enter a village with ed to cover the whole country in Graduate School Center, MCU, your sandals on. Whoever should 1972. After a successful control, Chiang Mai Campus, (so) enter it, there is an offence of it was partly integrated into Pro- Chiang Mai, Thailand wrongdoing … I allow, monks, a vincial health services in 1971 and monk if he is ill to enter a village was fully integrated into the pri- with his sandals on”.2 mary healthcare system in 1976. The Buddhist approach to health Effective case-finding in combi- and healing is an emphasis on spir- nation with chemotherapy using Introduction itual practice. Buddhism asserts the WHO multidrug therapy regi- that spiritual practice makes it men and health education brought In general, both illness and possible for an individual not on- about a decline in the prevalence death are understood as natural ly to see opportunity for practice of the disease to only 0.537 per events for all living things. They in the face of adversity, including 1,000 in 1987.3 Thailand was able are not to be feared. It is most im- sickness and injury, but to use this to eliminate leprosy by 1994, elev- portant that suffering is relieved. opportunity for personal transfor- en years before the goal set by the Clarity of consciousness is also mation and transcendence. World Health Organization – 2005 important. Illness and death are to Buddhist practice allows a deep – when the country eliminated lep- be faced as clearly and as whole- awareness of cause and conse- rosy as a public health problem. heartedly as possible while pain quence and insight into the nature Then, in 2013, seven years before is relieved. They are not unnatu- of conditioned interdependence. the 2020 target date of the World ral enemies but simply conditions Choice and practice are the two Health Organization, Thailand was to be taken care of. factors that the Buddhist patient recognized as having met the cri- The Buddha always informed has most control over. As a result teria for a sustainable elimination his disciples that this life is very of precept practice, meditation of leprosy. These achievements fragile and short. He told them that practice and skillful choice, the would not have been possible it was helpful to contemplate reg- Buddhist patient suffers less and without the vision and initiative of ularly on this fact. In his words: has a greater feeling of confidence H.M. King Bhumibol Adulyadej “For what good reason should and well-being. who initiated the project to control man or woman, lay folk or monk, Buddhism does not tell the pa- leprosy in Thailand under the Min- often contemplate on the fact that tient the meaning of sickness; rath- istry of Public Health in 1956.4 they are ‘sure to become sick and er, it tells him what he needs to do. As regards the leprosy situa- cannot avoid it’? Beings while Buddhism is a present moment tion in Thailand6 (as of December healthy take pride in their good path of action in life, sickness and 15, 2015), there are currently 527 health; and infatuated by that pride death. A Buddhist cannot change Thai leprosy patients. Out of these of health they lead an evil life in the past, but he does have some patients, there are 115 who were deeds, words, and thoughts. But control over the future if he can act newly diagnosed as having the dis- in him who often contemplates with skill and clarity in the present. ease in 2015. There are 20 cases or on the fact (of the certainty of ill- However, this paper is an at- 13 % of disability (level-2 disabil- ness), the pride in being healthy tempt to present how the Bud- ity) among those who are newly will either vanish entirely or will dhist community can contribute, affected. The incidence has been be weakened. For that good rea- by applying the Buddhist concept decreasing since the year 2011 and son, the fact (of sickness) should of health care, to the problem of the new cases are 405 with 60 cas- be often contemplated”.1 Hansen’s disease, and especially es of level-2 disability. It is evident Illness is not a suitable condi- to reducing stigma and discrimi- from the past 5 years (2010-2014) tion for Dhamma practices. Lord nation. that new patients with level-2 dis- Buddha said that birth, aging, ability are at 10-17 percent. sickness and death are the four The World Health Organiza- unavoidable dangers of humanity. The Situation of Hansen’s tion has set a target of reducing He tried to support ill monks in Disease in Thailand the number of new leprosy pa- order to encourage their rapid re- tients worldwide to no more than covery. There are many topics in The prevalence rate of leprosy 100 per million people by the Buddhist disciplines that support in Thailand was approximately 5 year 2020. The Ministry of Public an ill monk in living an easier life, per 1,000 in 1953. A specialized Health has set a target of reduc- in the same way as the Buddha al- leprosy control program was first ing the number of new leprosy pa- lowed monks who were ill to be- launched in 1956 in Khon-Kaen tients in Thailand to no more than 46 DOLENTIUM HOMINUM N. 90-2016

100 and reducing the incidence of stigma and discrimination under- negative attitudes towards peo- level-2 disability in newly diag- mine HIV prevention efforts by ple affected by leprosy or tuber- nosed leprosy patients to 0.3 of 1 making people afraid of seek- culosis. A majority of respondents million (20 cases) by 2020. ing information about HIV, as consider that both people affected The Department of Disease well as services and ways of re- by leprosy and people with tuber- Control of the Ministry of Public ducing their risk of infection and culosis have been treated poorly Health has accelerated its activity adopting safer behavior to avoid by others in the community. in two major areas:7 1) the search these actions provoking suspi- In Thailand,10 leprosy-affect- for leprosy patients in areas with cion about their HIV status. Re- ed people are still also stigma- epidemiological indications, and search has also shown that fear of tized by health providers and by through home contacts with pa- stigma and discrimination, which their neighbors. Some leprosy pa- tients, in order to immediately can also be linked to fear of vio- tients have been shunned and re- find new cases in a community lence, discourages people living fused treatment for their ulcers and to obtain standard treatment with HIV from disclosing their by nursing aid, resulting in de- so as to reduce the spread of lep- status even to their family mem- lay in diagnosis and poor com- rosy in the community and reduce bers and sexual partners and un- pliance with treatment in many the incidence of level-2 disability dermines their ability and willing- of them. Before applying for cer- in new leprosy patients; and 2) the ness to obtain access, and adhere, tain types of work, an applicant development of a network for the treatment. Thus, stigma and dis- needs confirmation from a doctor rehabilitation of leprosy patients crimination weaken the ability of that he/she does not have leprosy. through a survey of disability and individuals and communities to However, stigma manifestations the socio-economic problems and protect themselves against HIV and effects may differ depending needs of leprosy patients in order and to stay healthy if they are liv- on a person’s external appearance, to obtain appropriate rehabilita- ing with HIV.9 status, gender and social distance tion or self-reliance. to those who stigmatize. Apart from the successful con- trol of leprosy, Thailand has also Stigma and Discrimination succeeded against HIV and AIDS. towards People with Hansen’s Intervention to Reduce Stigma In the year 2016,8 Thailand re- Disease in Thailand and Discrimination against ceived validation from the WHO People with Hansen’s Disease for having eliminated the mother- Leprosy-related stigma appears in Thailand to-child transmission of HIV and to be common in Thailand and syphilis, becoming the first coun- other leprosy-endemic countries. To prevent stigma and to reduce try in Asia and the Pacific region Its manifestations have a nega- the manifestations that cause so and also the first with a large HIV tive impact on the affected per- much suffering to individuals and epidemic to ensure an AIDS-free sons and their families. Stigma their families, effective interven- generation. The Minister of Health has an effect on the lives of per- tion is needed. This systematic re- of Thailand was presented with sons affected by leprosy in both view aims to identify forms of in- the certificate of validation dur- socio-economic and physical tervention that have been used to ing a ceremony that took place in terms. People affected may face reduce such stigma and to assess New York on the eve of the United social rejection, lose social sta- their efficacy. Forms of interven- Nations General Assembly High- tus and gradually become isolated tion implemented to reduce lep- Level Meeting on Ending AIDS. from society, family and friends. rosy stigma in various studies are “This is a remarkable achievement The main manifestations of stig- presented in five categories: the for a country where thousands of ma in many studies have been that integration of leprosy services into people live with HIV. Thailand’s people affected by leprosy try to general health care; information, unwavering commitment to core conceal their disease and practice education and communication public health principles has made self-isolation. Communities ex- (IEC) programs; socio-economic elimination of mother-to-child press their negative attitudes to- rehabilitation (SER); changing the transmission of HIV and syphilis wards people affected by leprosy name of the disease; and counsel- a reality, a critical step for rolling by avoiding them, by forcing them ling. back the HIV epidemic. Thailand to go to a leprosy colony, and by Integrated services. Following has demonstrated to the world that refusing to share public transport trends in the international commu- HIV can be defeated”, Dr. Poon- with them. It has been found that nity, leprosy services in Thailand am Khetrapal Singh, Regional community members perceive have gradually been integrated in- Director, WHO South-East Asia that people affected by leprosy or to the general health care system Region, said when presenting the tuberculosis are stigmatized by starting in 1973. This process was certificate of validation to Thai- the community. However, com- completed in 1998. However, the land in New York. munity members perceive more monitoring and evaluation report However stigma and discrimi- stigma towards leprosy than to- of the National Leprosy Elimi- nation are still among the fore- wards tuberculosis, particularly in nation Plan (1994-1996) did not most barriers to HIV prevention, terms of shame, embarrassment, mention whether leprosy-related treatment, care and support. Spe- and problems in getting married. stigma had decreased, despite the cifically, research has shown that Community members perceive fact that enabling people affected DOLENTIUM HOMINUM N. 90-2016 47

by leprosy to live with dignity in disability worked as shopkeepers; esteem and the social participa- the ‘normal community’ was the and establishing disability devel- tion of people affected by leprosy major objective of the Plan.11 opment centers. However, the ef- and contact between people who Information, education and fect of the intervention on stigma are affected and other stakehold- communication (IEC). The Thai reduction was not assessed.13 ers. This results in a reduction of Leprosy Control Program (TLCP) Changing the name of the dis- a community’s negative attitudes. carried out four IEC campaigns ease. Thai people still use the between 1996 and 2007 as a major terms khi ruan and khi thut, part of the Leprosy Elimination which translate as “leprosy” and The Buddhist Mission in Social Campaigns conducted to observe “leprosy with disability”, to de- Work various special occasions of the grade another person. An attempt present King, His Majesty King to change the name “leprosy” to The Buddha was very compas- Bhumibol Adulyadej, who has be “numbness skin disease” was sionate towards all human be- kindly supported the TLCP since initiated at a meeting of leprosy ings. He realized how much hu- the beginning. Dissemination of workers at national and region- man beings suffer mentally and knowledge was conducted at na- al levels in 2003. The new name physically. Therefore, he urged tional, regional and provincial was used by some regional lep- his first sixty well-disciplined dis- levels through leaflets, television, rosy programs in the IEC cam- ciples to go in different directions posters, radio, local performances paigns. The “Leprosy Clinic” of individually to propagate the and village radio announcements. the National Leprosy Organiza- Dhamma and to teach the attain- After the first three campaigns, tion changed its name to “Numb- ment of inner peace. The Mahav- the number of newly detected cas- ness Skin Disease Clinic”. There agga pali contains the following es had increased by 20% while the is no evidence to show to what words: “Caratha bhikkhave cari- number of newly detected cases in extent the new name has changed kam bahujana hitaya bahujana subsequent campaigns decreased. attitudes towards leprosy.14 sukhaya lokanukampaya atthaya There is no record of whether Counselling. Counselling for hitaya sukhaya sadevamanussan- the stigma attached to leprosy leprosy patients in Thailand has am. Desetha bhikkhave dhamman changed as a result of the cam- been done only in some health adikalyanam majjhekalyanam paign.12 units, such as the outpatients de- pariyosanakalyana sattham sa- Socio-economic rehabilitation partment of the National Lepro- byanjanam kevelapparipunnam (SER). In Thailand, during the sy Organization, and in some re- parisuddham brahmacariyam pa- period July 1998 to June 2000, a gional and provincial health units. kasetha – O monks! Go on tour study was launched to develop an There is no evidence to show to for the good of many people, for appropriate model for communi- what extent it has helped to re- the happiness of many people out ty-based rehabilitation (CBR) and duce stigmatization.15 of compassion for the world, for to improve the quality of life of These forms of intervention the good and wellbeing and hap- people affected by leprosy. The have been carried out at differ- piness of God and men. O Monks! research was undertaken in two ent levels such as the intraperson- Preach doctrines that are good at phases. In the first phase, a re- al level (counseling, encouraging the beginning, good at the middle, search team spent three months self-care practice and socio-eco- good at the end, proclaim the pure in a community using anthropo- nomic rehabilitation); the inter- noble life with meaning, in full, logical tools to collect relevant personal level (home care teams: completely”.17 information. People affected by these consist of a doctor, a nurse, With respect to the duty of a leprosy were found to encounter a pharmacist, a physiotherapist, Buddhist monk to care for the different levels of stigmatization a social worker, an occupational sick, there is the story that the according to their relationships therapist, and health volunteers); Buddha advised his disciples to with relatives and friends, disa- the community level (education take care of a sick monk. “Now bility status, and social-econom- and contact); and the organization- at that time a certain bhikkhu was ic status. In the second phase, the al level (education and contact). sick with dysentery. Then the team encouraged local people to An intervention study16 was Blessed One, on an inspection establish CBR through participa- conducted to develop de-stigma- with Ven. Ananda as his atten- tory identification and an analysis tizing interventions aimed at re- dant, saw the bhikkhu lying fouled of the problems of people affect- ducing the stigma related to lep- in his own urine and excrement. ed by leprosy and of other people rosy and to improve the quality The Blessed One sprinkled water with other disabilities. They par- of life of the people affected by on the bhikkhu, and Ven. Anan- ticipated in planning and in im- it. This intervention study, ana- da washed him. Then the Bless- plementing rehabilitation activi- lyzing three different approaches ed One had the bhikkhus assem- ties. These activities included a to de-stigmatization, showed that bled and asked them: ‘Is there a disability survey; taking people the most effective de-stigmatizing sick bhikkhu in that dwelling over with disabilities to hospital; reg- interventions were those that in- there?’ ‘Yes, O Blessed One, there istering people with disability in volved local stakeholders, includ- is’. ‘And what is his illness?’ ‘He order to be eligible for govern- ing the beneficiaries themselves. has dysentery, O Blessed One’. ment assistance; raising funds; or- Their involvement helps to fa- ‘But does he have an attendant?’ ganizing stores where people with cilitate the improvement of self- ‘No, O Blessed One’. ‘Then why 48 DOLENTIUM HOMINUM N. 90-2016

don’t the bhikkhus attend to him?’ ceive the pabbajja ordination. He teer roles, including home visits ‘He doesn’t do anything for the who confers the pabbajja ordina- and counseling in order to con- bhikkhus, lord, which is why they tion (on such a person) is guilty of tribute to the sustainability of don’t attend to him’. ‘bhikkhus, a dukkata offence”. AIDS management. you have no mother, you have Leprosy (Kuttham) is the first of Self-Esteem Development for no father, who might tend to you. the five diseases to prohibit high- PLWHA and the SALT Group.22 If you don’t tend to one another, er ordination. However, Navon’s S-A-L-T is a way of working in who then will tend to you? Who- study in Thailand reported that harmony with the way human ever would tend to me, should Buddhism did not assign a unique thinking is developed to respond tend to the sick’”.18 status to leprosy. Although Bud- to, and deal with, problems. Work- In Buddhism, persons belong- dhism officially forbade males af- ing with the S-A-L-T community ing to any , both males and fected by leprosy from fulfilling empowers communities to use females, are eligible for mem- their traditional duty of joining their potential and its strengths bership of the Buddhist Sangha. the monastic order (for a period 3 fully. And the community can There are many conditions in the months), it was revealed that this handle its problems sustainably. process of ordination to be in the prohibition was not strictly en- Volunteers can apply S-A-L-T to Order of Sangha. Those are as fol- forced and had no adverse effects home visits to discovering poten- lows:19 on the image of the disease.21 tial. The strength of HIV-infect- 1) The person who wishes for ed people and the family is great. Upasampada must be a man. S-A-L-T stands for: - S – Share/ 2) He must have attained the The Reduction of Stigma and Support/Stimulate; - A – Appreci- prescribed age of 20 years cal- Discrimination in Relation ate/Analyze; - L – Learn/Listen/ culated from conception (this is to HIV/AIDS in Thailand: Link;- T – Transfer/Team fixed by carefully counting the Lessons Learnt for Hansen’s Appreciation: Appreciation is time spent in the mother’s womb Disease the first important way of getting as six lunar months). into the S-A-L-T community and 3) He must not be defective as The Interfaith Network on involves appreciating what peo- a man, that is to say a eunuch (or HIV/AIDS in Thailand – INHAT ple, families and communities are defective in other ways lacking – works with the support of the doing or succeeding in (this may limbs, organs or deformed). GFATM and the NCA on the pro- be a simple way of handling prob- 4) He must never have commit- gram of care and support. Apart lems but works for the communi- ted any serious crime, including a from care for PLWHA and affect- ty and the individual). capital offence. ed people through the setting up Listening: Listening to learn is 5) He must never have commit- community rehabilitation centers, a way of making the community ted any serious offence according the INHAT also organizes TOT listen, learn, understand and ap- to Buddhasasana, such as com- programs for them to play a role in preciate the strength and the abil- mitting a Parajika offence when organizing the process to convey ity of people in the community so previously ordained as a bhikkhu, the concept of community-based that they can manage their own and he must not have been a bhik- AIDS management by the commu- affairs. khu in the past who had wrong nity to volunteers for home visits. Support: Another important views and entered some other re- Using various tools to convey ide- element is supporting people/ ligion. as such as S-A-L-T and After Ac- the community. It is not neces- Regarding prohibition of those tion Review (AAR), they also pro- sary to support by giving material affected with some diseases, at mote using the tools at work and things: what is needed is encour- that time ordained bhikkhus were links to understanding and accept- agement and support after under- seen who were afflicted with lep- ing PLWHA in order to reduce dis- standing, learning and appreciat- rosy, boils, dry leprosy, consump- gust and stigma in the community. ing potential/strength, including tion, and fits. This was told to the These ideas will help to change the how to handle community prob- Buddha. The Buddha then ob- attitudes and work of volunteers, lems. This is because people/the served:20 “I prescribe, O bhikkhus, especially on home visits, where community (including ourselves) that he who confers the upasam- home visit teams often go as “giv- are often not aware of their own padâ ordination, ask (the person ers” and view the person who is strengths. to be ordained) about the Disqual- visited as a “recipient” and over- Stimulation: Careful listening ifications (for receiving the ordi- look the potential or strength of the is also an important part and in- nation). And let him ask, O bhik- person who is visited in managing volves understanding and analyz- khus, in this way: Are you afflicted his or her own problems. ing what we have heard from the with the following diseases; lep- The process of promoting learn- community. This allows us to ask rosy (Kuttham), boils (Gando), ing for the volunteers of the reha- questions to stimulate the com- dry leprosy (Kilaso), consump- bilitation centers aims to provide munity so that they can analyze tion (Soso) and fits (Apamaro)? volunteers with an understanding themselves and what they are do- …”. The Buddha also addressed of the processes and tools, espe- ing. Questioning is very impor- the bhikkhus (monks): “Let no cially S-A-L-T and AAR, and to tant for the volunteer teams in one, O bhikkhus (monks), who is practice the tools used to imple- helping to share roles and support affected with the five diseases, re- ment the core activities of volun- each other in generating questions DOLENTIUM HOMINUM N. 90-2016 49

that encourage the community to engage in exchanging, learning Bibliography analyze the answers on its own. and transferring as regards les- Horner, I.B., Vininya. Vol. IV, 1982. It is not the duty of the volunteer sons learnt from each other. INHAT Team, Manual of TOT of volun- teams to give responses or sug- Practice and Review: A com- teers in Community Rehabilitation Center, printed paper. gestions as experts. munity visit with S-A-L-T is Nyanaponika Thera, Anguttara Ni- Analysis: In the use of S-A-L-T, work involving a “learning-by- kaya, vol. V, 1975. volunteer teams need to analyze doing” approach. Then there must Ramasoota, Teera, The History of Leprosy in Thailand, Masterkey Co., Ltd., what they listen to and learn and be a review to improve the pro- Bangkok, 2016. to help in encouraging the com- cess. Therefore, practice, review Silatham Sermrittirong, Stigma and stigma interventions related to leprosy and munity to analyze by having dis- and development must be done tuberculosis in Thailand, Ridderprint, Rid- cussions and exchanges to under- alternately at all times. derkerk, The Netherlands, 2014. stand the root causes of AIDS and Silatham Sermrittirong, Stigma in leprosy: concepts, causes and determi- other related issues. nants, in http://www.lepra.org.uk/platforms/ Linking: When they begin to Conclusion lepra/files/lr/Mar14/1835.pdf talk with the community, volun- Sompong Suvannaphuma, LIVING IN PEACE: THE HARMONIOUS SOCIETY, teer teams may focus on meet- The programs that aim to en- Journal of MCU Social Development, vol.1 ing with someone or some groups able volunteers to understand the n.2, May-August 2016. only. It is essential to have links processes and tools are in particu- https://www.ncbi.nlm.nih.gov/pub- med/3217829 with other people in the commu- lar “S-A-L-T” and “AAR”. They ThaiHealth Fund: http://www. nity and to persuade all groups help volunteers to improve their thaihealth.or.th/Content/30249- to participate and exchange ideas skills in using tools to implement สถานการณ์โรคเร ื ้อนในประเทศไทย.html http://www.searo.who.int/mediacentre/re- that will allow linking work in re- core activities, including home leases/2016/1627/en/ lation to other issues as well. visits and counseling, in order to http://www.unaids.org/en/resources/doc- Transferring/Transmission: reduce stigma and discrimination uments/2014/ReductionofHIV-relatedstig- maanddiscrimination Transferring can take many towards PLWHA and contrib- http://www.sacred-texts.com/bud/sbe13/ forms. As regards the volunteer ute to the sustainability of AIDS sbe1312.htm teams, they can bring what they management in Thailand. This have learned from one commu- lesson about the reduction of stig- Notes nity and transfer it to other com- ma and discrimination, together 1 A.V 57 in Nyanaponika Thera, 1975: 12. munities. And a community can with the Buddhist idea of health 2 Vin.IV in Horner, 1982: 260. directly transfer, exchange and care, can be applied in response to 3 https://www.ncbi.nlm.nih.gov/pub- med/3217829 learn with other communities, the problem of Hansen’s Disease, 4 Ramasoota, Teera, The History of which may bring about changes especially in the work of reduc- Leprosy in Thailand, Masterkey Co., Ltd., in other communities as well. In tion of leprosy-related stigma and Bangkok, 2016. p 5. 5 Chiangmai Leprosy Colony, founded addition, the volunteer teams can discrimination in leprosy affected by James McKean in 1908 (source: McKean also stimulate the community to areas around the world. Rehabilitation Center). 6 ThaiHealth Fund: http://www. thaihealth.or.th/Content/30249- สถานการณ์โรคเร ื ้อนในประเทศไทย.html. 7 Ibidem. 8 http://www.searo.who.int/mediacentre/ releases/2016/1627/en/ 9 http://www.unaids.org/en/resources/doc- uments/2014/ReductionofHIV-relatedstig- maanddiscrimination 10 Silatham Sermrittirong, Stigma in leprosy: concepts, causes and determinants, http://www.lepra.org.uk/platforms/lepra/ files/lr/Mar14/1835.pdf, p. 37. 11 Silatham Sermrittirong, Stigma and stigma interventions related to leprosy and tuberculosis in Thailand, Ridderprint, Ridderkerk, The Netherlands, 2014. p. 74. 12 Ibid., p. 75. 13 Ibid., p. 76. 14 Ibid., pp. 76 – 77 15 Ibid., p. 77. 16 Ibid., p. 139. 17 Mv 1.11.1 p. 21. 18 Mv 8.26.1-8. 19 Sompong Suvannaphuma, ‘LIVING IN PEACE: THE HARMONIOUS SOCIE- TY’, Journal of MCU Social Development, vol.1 n.2, May-August 2016, pp.42-56. 20 http://www.sacred-texts.com/bud/sbe13/ sbe1312.htm, p. 76. 21 Silatham Sermrittirong, Stigma and stigma interventions related to leprosy and tuberculosis in Thailand, Ridderprint, Ridderkerk, The Netherlands, 2014, p. 46. 22 INHAT Team,คู่มือวิทยากรแกนนำ�อา สาสมัครศูนย์ฟื้นฟูคุณภาพชีวิตในชุมชน (ครู ก.): กระบวนการเสริมสร้างความสามารถใน การจัดการปัญหาเอดส์, , p.16. 50 DOLENTIUM HOMINUM N. 90-2016

THIRD SESSION GOOD PRACTICES AND TESTIMONIES

1. The Current Status of Leprosy in India and the Role of the Indian Catholic Church in Reaching out to Socially Excluded People Affected by Leprosy

FATHER ARPUTHAM Nagar Trust, says, “[The sister] try. A review of the current chal- ARULSAMY provided proper accommodation lenges brings out the need for con- Associate Director of the for every family in the [enclave] tinuing measures to prevent and Catholic Health Association with the resources she had mobi- control the disease, along with of India lized ….” What impresses him is the provision of care and support that the nun cleans the wounds of to patients and their families. We the Leprosy patients and dresses will also dwell on the Catholic ‘Leprosy work is not merely them “one after another, every Church’s role in these efforts, es- medical relief but it is transform- day, without any hesitation, as if pecially the Catholic Health As- ing the frustration of life into joy caring for a small kid.”1 sociation of India (CHAI), one of of dedication and personal ambi- the main healthcare organs of the tion into selfless services’ – Ma- This story vividly depicts the Bishops’ Conference of the coun- hatma Gandhi. self-sacrificing life of hundreds of try, and CHAI’s member Institu- “This is my new life and I am invisible nuns of various religious tions. We will conclude by de- indebted to my Ma [mother],” Congregations and their lay co- scribing a Way Forward for the says Gundeli Bai, who has lost workers in India who have found Catholic Church in this whole en- fingers on both hands due to lep- joy in serving people infected/af- deavour. rosy. “I would have died, and my fected by leprosy (Hansen’s dis- body could have been eaten by ease), irrespective of caste, color, dogs long ago,” says Bai, who has creed, religion or ethnicity. They The Current State of Leprosy been living for more than two dec- are the visible faces of Christ’s in India ades in the Harsha Nagar (joy- compassionate care and healing ful city) enclave, started by her touch: Christ-inspired positive India tops the list of countries “Ma,” [an Augustinian nun]. The influence!2 The Salt of the earth! fighting the stigma of leprosy, al- enclave is at Sendhwa, a village (Mt. 5:33). beit fifteen years after the disease in Barwani district in the central Despite all the government’s was deemed to have been eliminat- Indian state of Madhya Pradesh claims of having eradicated lep- ed globally. India, Brazil and Indo- for leprosy patients. rosy and spreading awareness that nesia contributed 83% of the new The septuagenarian Bai says it is not an infectious disease, sep- cases detected in 2011, with In- her parents had died early, and af- arate colonies of leprosy patients dia contributing 58%, Brazil 16%, ter she was detected with leprosy, continue to exist in various States, and Indonesia 9%.4 This is despite her only sister left her on the road. while thousands are forced to live all countries in the world having At the enclave, she earned the along roadsides. Srinivas, a lepro- achieved the WHO-prescribed rate nickname “Sundari Bai” (beauti- sy patient living on the road near that qualifies for elimination (be- ful woman) because of her cheer- Raipur’s railway station, says: low 1 per 10,000 inhabitants). ful disposition. Sundari Bai is “Millions and billions of rupees The National Leprosy Eradi- among 258 Leprosy patients from have been spent in our name, but cation Programme (NLEP) was 85 families living in Harsha Na- we are still on the roads”. 3 launched in 1983. India declared gar enclave. In this short discussion, we will that it had achieved the goal of the The Sub Divisional Magis- glance through the current state of elimination of leprosy as a public trate Mahesh Badole, who is al- leprosy which has been deemed to health problem at the national lev- so the President of the Harsha have been eliminated in the coun- el at the end of December 2005, DOLENTIUM HOMINUM N. 90-2016 51

as the prevalence rate recorded Kerala, along with other States tres (many of which were main- then was 0.95/10,000 inhabit- across the country Maharashtra, tained by Church institutions) ants.5 This was thanks to the hard Bihar, Goa, J&K, the Punjab, Na- were forced to stop functioning work of a large number of health galand and Sikkim. and most of the leprosy patients personnel of the government sec- It is true that India could bring and their dependents were again tors and donor partners but also of down leprosy to a remarkable thrown out on the roads, earning voluntary organisations (NGOs/ level, reducing the case load to their livelihood by begging and CBOs), including the care and a point where we could achieve suffering the scorn of the public. support centres of the Church’s elimination at the national level, This is also what happened institutions. thanks to the introduction of MDT when the government stopped Nevertheless, leprosy continues as a cure for leprosy and simpler funding in April 2013 for the to afflict the vulnerable, causing case definitions for the diagno- Community Care Centre for PL- life-long disabilities in many pa- sis of new cases, along with con- HIV in the name of integrating tients, subjecting them to discrim- certed and coordinated efforts of HIV into the general health sys- ination, stigma and a life marred national, international and donor tem. Of the 256 CCCs, 123 of by social and economic hard- agencies. Post-elimination lepro- them were maintained by the ships. The latest figures point out sy control services have been inte- Catholic Church. Even today that in some pockets of the coun- grated into the general health sys- some of these centres continue try the disease has tended to make tem with the aim of achieving an to operate, though with great dif- a comeback. According to the equitable distribution, as well as a ficulty, mobilising their own and NLEP Annual Report 2013-14:6 rational allocation, of resources.7 local resources. – A total of 126,913 new cas- However, as the aforementioned In reality, the State abdicated, es were detected during the year figures suggest, of late it seems or escaped from, its responsibil- 2013-14, which gives an annual that the disease has tended to make ity, without establishing suitable new case detection rate (ANCDR) a comeback in certain pockets due systems: not allocating sufficient of 9.98 per 100,000 inhabitants. to a lack of vigilance and a drastic human and financial resources This shows a decrease in ANCDR reduction of resources. The trends and facilities; not making medi- of 7.4% from 2012-13 (10.78). over the years post-integration cine available; and not taking the – A total of 86,147 cases were suggest an ongoing active trans- meted out to pa- on record as of 1 April 2014, mission within the community, de- tients in the general health con- giving a prevalence rate (PR) of layed diagnosis, and poor monitor- text into account. People suffer- 0.68 per 10,000 inhabitants. This ing and epidemiological control.8 ing from leprosy and HIV/AIDS shows a decrease in the PR of were left to their own devices. 12.8% from 2012-13 (0.78). – Detailed information on new The Current Challenges Legal discrimination leprosy cases detected during 2013-14 indicates the proportion The escape of the duty bearer India’s first leprosy case was of multi-bacillary leprosy (MB): from responsibility detected way back in 600 BC; the 51.48% & female: 36.91% & chil- disease was mentioned in the Su- dren: 9.49% & grade II deform- It is true that until two decades shruta Samhita and other literary ity: 4.14% & ST cases: 17.88% & ago ‘the false religio-social cor- works of the Vedic period. Lepro- SC cases: 18.03%. relation with sins… further made sy was then seen as an infectious – In absolute numbers, Bihar the plight of leprosy sufferers dif- disease and leprosy patients faced has the highest number of leprosy ficult. To overcome this injustice a social boycott. Centuries later, patients with 18,188, followed by meted out to these unfortunate even though we know today that Maharashtra with 16,400, Odisha ones some missionaries took cou- people can be completely cured, with 10,645, Gujarat with 9,721, rageous steps to look after them social stigma and discrimination and Chhattisgarh with 8,519. and established ‘leprosoria’ for are so strong that the laws to pro- – However, in terms of the their care, but the same step be- tect the marginalised and vulner- prevalence rate, Dadra and Nagar came counterproductive and a able have discriminatory clauses Haveli tops the list with 4.04 out cause for dehabilitation of the lep- against leprosy victims.10 of 10,000 inhabitants, followed by rosy patients and for perpetuating Several State laws (some of Chhattisgarh (2.10), Lakshadweep and strengthening the social stig- them enacted before the introduc- (1.98), and Chandigarh (1.22). ma against the disease’.9 Though tion of multi-drug therapy (MDT) – According to the Central Lep- this may be true to a great extent, in 1982 by WHO but not updated) rosy Division of the Government when government and agencies in the States of Chhattisgarh, Ra- of India, 10% of all new cases of either fully or partially stopped jasthan, Madhya Pradesh, Andhra leprosy in India occur among chil- support for these leprosoriums, Pradesh and Orissa have provi- dren under the age of 14. The pro- and wanted to integrate the care sions that prohibit leprosy pa- portion of child cases was more and support systems for the lepro- tients from contesting elections, than 10% of new cases detected sy patients into the general health obtaining driving licenses or trav- in 13 States/UTs, including the system, there was no proper tran- elling in trains, and they even see rather affluent southern States of sition planning. In fact, due to a the disease as valid grounds for Andhra Pradesh, Pondicherry and shortage of funds many of the cen- divorce. Furthermore, Orissa’s 52 DOLENTIUM HOMINUM N. 90-2016

Panchayati Raj Act has the clause ration card, etc. is very difficult. maintain the knowledge, the skills that if a member of a local office Often the disease-free children of and the interest that are needed to contracts tuberculosis or leprosy leprosy patients are also shunned deal with leprosy in the context of during their tenure they can be by the communities they live in.14 its declining endemicity. There is declared ineligible for the job. In a need to have a permanent edu- Andhra Pradesh and Karnataka Psychiatric disorders cation system for primary health- the hearing impaired and the mute care professionals for leprosy in cannot stand for panchayat elec- Efforts have been made by the addition to motivating and train- tions. When India passed the Lep- government and other organisa- ing professionals to work in spe- rosy Act in 1898 it was to ensure tions, including the Church’s in- cialised reference centres and in that leprosy patients did not face stitutions, to solve the medical care and support centres to pro- discrimination. A hundred years problems of people infected and vide long-term care to people who on, Indian laws and regulations affected by leprosy. However, not are permanently disabled because do exactly that.11 much is done about the prevalence of leprosy.17 The government, non-govern- of psychiatric disorders amongst The lack of efforts as regards mental organisations (NGOs) and them, including comorbid psy- vigilance and the creation of pub- private organisations need to work chiatric disorders (social stigma lic awareness has also produced a together to maintain constant vig- and discrimination being the main reduction of motivation in social ilance, provide care and support, causes of this). Even today people workers and non-governmental and remove legal and other social infected with leprosy have to leave and private organisations. taboos relating to people infected their village and are socially iso- There is a lack of adequate hu- and affected by leprosy. The on- lated. Depression is the most com- man resources and volunteers as going training and motivation of mon psychiatric disorder found in well as diagnostic services to iden- medical officers, nurses, physio- these patients. Early detection and tify cases at an early stage. As has therapists and paramedical work- the provision of comprehensive been noted, there is a shortage of ers in relation to quality diagno- psychiatric care for psychiatric funds provided by the government. sis and the treatment of leprosy is disorders is a very much needed As a result of the inadequate necessary.12 psychotherapeutic measure.15 support for committed organisa- tions and social workers/volun- Social stigma and discrimination Maintaining knowledge, skills teers, patients and their families against the infected and the and motivation in health-care are not facilitated in gaining ac- affected professionals and community cess to the support that is avail- social workers and the shortage able from the government in vari- As the WHO has stated, the of resources ous schemes. main and continuing challenges to Apart from social stigma and leprosy control have been delay in Increasing community aware- discrimination, in the name of a the detection of new patients and ness and involvement as well as lower degree of disability (75% persisting discrimination against the continued commitment of of disabled people are entitled people affected by leprosy which health-care personnel are required to government schemes), the pa- has ensured the continued trans- to improve early case detection, tients are often denied these ben- mission of the disease.13 compliance with treatment, and efits on technical grounds too. Although the government of In- community-based rehabilitation. dia declared that it had achieved Otherwise, we may lose the re- a prevalence rate below 1/10,000 markable gains that have been The New Global Leprosy inhabitants in 2005, the stigma of achieved.16 Strategy of the WHO leprosy endures in India. Persis- The latest figures indicate that tent stigma, prejudice and mis- the disease has tended to make In April 2016 the WHO understanding in relation to lep- a comeback in certain pockets launched a new global strategy rosy continue to be stubborn of the country. This highlights for leprosy guided by the prin- barriers for leprosy patients and the significance of the continued ciples of initiating action, ensur- their family members. Once diag- role of health-care profession- ing accountability and promoting nosed with leprosy, patients face als, especially dermatologists, inclusivity. It called for stronger the long and uphill task of recov- in the management of control commitments and accelerated ef- ering and then reintegrating into programmes, diagnosis, and the forts to end leprosy disease trans- their community. Employers reg- treatment of the disease, as well mission and associated social ularly turn away people who have as in the ongoing education of stigma and discrimination. This had the disease, even if they have other health-care professionals. new strategy aims to achieve a ze- been treated and cured. Often peo- Give that vigilance in relation to ro number of visible deformities ple diagnosed with leprosy hide leprosy and consequent resource among children diagnosed with their condition from their fami- allocation has been drastically re- leprosy by 2020; to reduce the lies and loved ones out of the fear duced by the government, with an rate of newly-diagnosed leprosy that they will be ostracised by the accompanying reduction of non- patients with visible deformities community. Obtaining legal doc- governmental/private initiatives, to less than one per million; and uments such as a driver’s licence, the problem at present is how to to ensure that all legislation that DOLENTIUM HOMINUM N. 90-2016 53

allows discrimination on the basis person is the kind of love that all lack of human resources, a lack of of leprosy is repealed. The strat- of us are called to share, to reach funds from the government and egy focuses on equity and uni- out in a spirit of healing, a spirit other agencies etc., it will abdi- versal health coverage which will of compassion, the share the suf- cate its responsibility towards the contribute to attaining the Sus- fering of others, to be joined with socially and economically mar- tainable Development Goal as re- them. If we join together, people ginalised and vulnerable while gards health.18 are healed. They are lifted up. keeping safe within the four walls Their suffering becomes more of our institutions. ‘You are the bearable.”20 salt of the earth, but if salt has lost The Biblical Perspective and Jesus calls us his disciples and its taste, how can its saltiness be the Church’s Mission his Church to be “the visible face restored? It is no longer good for of the invisible Father.” ‘Then anything but is thrown out and The narratives of the gospels Jesus summoned His twelve dis- trampled underfoot’ (Mt. 5:13). about Jesus’ healing of people ciples and gave them authority suffering from leprosy and his in- over unclean spirits, to cast them teractions with them provides an out, and to heal every disease and Care and Support for People unambiguous message and man- every sickness. …. “Heal the sick, Infected and Affected by date as regards the Church’s mis- raise the dead, cleanse the lepers, Leprosy: the Role of the sion and how she has to respond cast out demons. Freely you re- Catholic Church to society’s condemning attitudes ceived, freely give”’ (Mt 10: 1, towards those suffering from lep- 7-8). Heeding the mandate of Christ, rosy and similar diseases in to- Be the healers and carers of the the Catholic Church in India has day’s situation: HIV, TB, etc. sick and the crippled, the ones been actively involved in the For instance, Mark’s narrative that God himself never fails to treatment and eradication of lep- may be seen as a primary exam- care for (Ezek 34:4). rosy and other infectious diseases ple of Jesus’ non-judgemental re- The Church by being ‘the vis- for many years. St. Joseph’s Lep- sponse to these condemning atti- ible face of the invisible Father’ rosy Hospital, founded in the year tudes of devaluation, distancing, has to continue to be a Christ-in- 1890 by Father Augustus Muller, hatred, rejection by the family, spired positive influence in local is one of the first leprosy hospitals exclusion, and labelling. Fear was contexts, countering and acting in southern India. Modern scien- often at the root of these negative upon condemning attitudes to- tific treatment and the concept of attitudes, e.g. fear of exposure to wards the socially excluded and leprosy control did not exist then the disease, fear of being infected, marginalised, especially when and leprosy was the disease that fear of association with a person this is the result of illness. was most dreaded. It had no spe- affected by leprosy.19 Christ’s mandate to his Church cific treatment, was associated ‘A leper came to him begging has been categorically repeat- with social stigma and patients him, and kneeling he said to him, ed in our times by Pope Francis, were ostracised by society.22 “If you choose, you can make me and without mincing his words: ‘I clean.” Moved with pity, Jesus prefer a Church which is bruised, stretched out his hand and touched hurting and dirty because it has The Catholic Health him, and said to him, “I do choose. been out on the streets, rather than Association of India (CHAI) Be made clean”. Immediately the a Church which is unhealthy from leprosy left him, and he was made being confined and from clinging The Catholic Health Associa- clean’ (Mk 1:40-42). to its own security. I do not want tion of India (CHAI), one of the “First of all, as Mark says, Je- a Church concerned with being at main arms of the Health Com- sus has profound compassion for the centre and which then ends by mission of the Bishops’ Confer- this person, which means that you being caught up in a web of ob- ence, is the largest not-for-profit feel with. You enter into the suf- sessions and procedures. If some- faith-based health-care network fering, the pain, so that you share thing should rightly disturb us in India, with over 3,517 member the very same things this person is and trouble our consciences, it is institutions. 80% of them are lo- experiencing. Sometimes in this the fact that so many of our broth- cated in remote, medically under- Gospel you read that Jesus had ers and sisters are living without served rural areas, and operate un- pity, but pity is not really what it the strength, light and consola- der eleven Regional Units across was. It was compassion. So Jesus tion born of friendship with Je- the country. Over 90% of these in- reaches out and touches the man, sus Christ, without a community stitutions are run by sisters of var- breaking down that barrier of iso- of faith to support them, without ious religious Congregations. lation, drawing the person in out meaning and a goal in life’.21 Founded in 1943 by Sr. Dr. Mary of love. Jesus felt his isolation, his The ultimate question here, Glowrey, an Australian medic and pain, and He touches him. Jesus then, will be whether the Church Catholic nun, CHAI comprises shares that, but then, by sharing and its health-care institutions most Catholic health-care facili- it, Jesus heals the man or cleans- and initiatives, pastoral work, ties: 746 small, medium, and ma- es him, so that now he is able to and social development projects jor hospitals, 2,574 health centres, rejoin the community. That kind will remain the ‘Salt’ of the earth 107 centres for mental health, 61 of love that Jesus shows for this or whether, under the cover of a centres for alternative systems of 54 DOLENTIUM HOMINUM N. 90-2016

medicine, 162 non-formal health of these centres now focus their The untiring efforts of sister facilities and 5 medical colleges, attention on other communicable nurses in providing regular clean- 615 residential health-care centres diseases, especially HIV/AIDS ing and bandaging for ulcers, as for the aged, 678 training centres etc., as the prevalence of leprosy well as moral and spiritual sup- and 443 rehabilitation centres in- is decreasing in many of the opera- port, is exemplary and provides a volved in the preventive and cura- tional areas. beacon of hope to the leprosy af- tive care of people, 123 commu- The average number of in-pa- fected who are often cast out by nity care centres for people living tients treated in 60 leprosy care society and their families. These with HIV/AIDS including 40 cen- centres is 66,000 per annum. institutions also provide outreach tres for infected/affected children, These include ulcer wounds treat- activity and mobile services so 60 counselling centres, 82 centres ment for over 30,000 patients and that patients can become a part of for tuberculosis and the terminal- bed-ridden care for over 5,000 pa- the communities. They also reach ly-ill (palliative care centres), 120 tients. These centres do follow-up out to people in their villages and nursing schools/colleges) and 600 care for around 50,000 patients. facilitate their integration into so- project-based institutions focused They do referral services and on ciety and enable them to live to on certain diseases in cooperation average 4,000 patients every year the fullest extent, performing ac- with the government as well as are referred to higher centres and tivities of daily life without hin- other social concerns.23 NLEP. They facilitate social secu- drance or stigma. They also pro- These health facilities provide rity for the patients and their fam- vide them with end of life and critical health-care services to the ilies through tie-up with govern- palliative care, supporting patients poor and marginalised with a net- ment disability pension schemes, until their last breath, even when work of over 1,000 nun-doctors, promote the distribution of aid abandoned by their families. 25,000 nun-nurses, 10,000 plus and assistance, and encourage These centres receive little or nun-paraprofessionals, and 5,000 treatment adherence. no local support, monetary or oth- nun social workers, along with They also organise awareness erwise; they have to face a lack of their lay co-workers.17 One can programmes, self-care, mobile funds, a lack of support through safely assume that nearly 130,000 clinics, counselling and physi- governmental schemes; they have people (religious, lay workers otherapy. They address stigma to advocate for quality and the and volunteers) render services and facilitate marriages, and help timely supply of drugs and they in these institutions collectively. these people cope with the side ef- have to rely on self- generated CHAI’s member institutions treat fects of treatment. funds or foreign hand-outs for more than 21 million patients eve- These centres provide commu- sustenance. ry year. This includes 5,000 HIV nity-based rehabilitation services At this point, we have to ob- patients, approximately 2,000 such as employment opportuni- serve that in some States some of children affected or infected with ties for patients and their family these centres are being forced to HIV in institutional care, 15,000 members in small industries; the close down by a fanatically mo- cared for in community-based construction of houses; inclusive tivated political will under the care, and 10,000 children with education of children and the free cover of false allegations of reli- special needs who are provided distribution of text books, uni- gious conversion. Some of these with annual educational, health forms and other stationery; the centres, which are singlehandedly and rehabilitation support. CHAI distribution of provisions to meet managed by sister nurses, are be- member institutions and their sis- basic needs, providing free of ing closed down under the cover ter concerns facilitate more than cost dhal, rice, oil and vegetables of the Clinical Establishment Act two million self-help group mem- etc.; financial support to children which makes imperative the pres- bers. Over 5,000 students gradu- and self-employment opportuni- ence of doctors to maintain health ate every year from CHAI-mem- ties such as jute centres, making centres. Some of them, working ber nursing schools.24 bags, coir mats and also cultiva- in participation with the govern- tion, weaving and sewing units, ment, face being closed down un- and making MCR chapels for foot der the cover that leprosy in India The Role of CHAI and care. has reached the stage of elimina- its Member Institutions Five of these centres across tion, that it is a ‘dying disease’.26 in Reaching out to Socially three States are exclusively ded- Excluded Leprosy Patients icated to providing medical care, and their Families physical and vocational rehabili- The Way Forward tation, reconstructive surgery, so- The Catholic Church once cial support and counselling to The Indian Catholic Church has maintained 165 homes dedicat- people affected by leprosy. These to refocus on the process of care ed to those afflicted by leprosy five centres cater to an annual in- and support for people infected for over 30 years and these were flow of more than 3,600 leprosy- and affected by leprosy. For the mostly maintained by CHAI mem- affected individuals and provide last few years, as the government ber institutions.25 Today, due to in- for a range of inpatient and out- and other agencies have stopped adequate resources, the number of patient facilities through a bed or substantially reduced funding, these care and rehabilitation cen- capacity of over 200 with recon- many of our care centres for peo- tres has been reduced to 60. Many structive surgeries. ple infected and affected by lepro- DOLENTIUM HOMINUM N. 90-2016 55

sy and others dedicated to leprosy a possibility of benefit for them- 7 Aparna Pandey, Current perspectives on leprosy as a public health challenge in initiatives have altogether stopped selves! It must stand instead, in India. Dove Press. 24 July 2015, Vol. 2015, functioning or have focused atten- line with Christ’s mandate, for 6, pp. 43-48. Accessed on 20 May 2016, at: tion on other communicable dis- the universal acceptance of the https://www.dovepress.com/current-per- spectives-on-leprosy-as-a-public-health- eases such as HIV and TB. Unlike sick and suffering, irrespective challenge-in-india-peer-reviewed-fulltext- other NGOs, it is time for the In- of caste, creed, colour, language, article-RRTM dian Church to stop being donor- region, ethnicity, and, above all, 8 Aparna Pandey, Current perspectives on leprosy as a public health challenge in driven, and instead, carry forward benefits for herself. India. Dove Press. 24 July 2015, Vol. 2015, these initiatives, including those This apart, it is also good to re- 6, pp. 43-48. Accessed on 20 May 2016, at: relating to leprosy, with a neces- flect, while we fight against the https://www.dovepress.com/current-per- spectives-on-leprosy-as-a-public-health- sary process mode rather than a social stigma and discrimination challenge-in-india-peer-reviewed-fulltext- donor-driven project mode. against people infected by lepro- article-RRTM The Church must be the ongo- sy and HIV, on how many of us 9 Misra R.S., Leprosy: A Reference Guide for Medical Practitioners, Pro- ing visible face of Christ’s com- are ready to support these people gramme Managers and Leprosy Workers passionate care and healing touch by giving them employment and (Concept Publishing Company, New Delhi, rather than ceasing initiatives un- livelihood opportunities in our in- 1993), p. 23. 10 Putul Alok Prakash. Laws in India der the cover of the non-availa- stitutions and initiatives. Are we criminalise leprosy. OneWorld South Asia. bility of funds from the govern- ready to practise what we preach? 23 June 2008. Accessed on 20 May 2016, at: ment and other regular sources. Walk the talk? http://southasia.oneworld.net/Article/laws- in-india-criminalise-leprosy She can, and she must, mobilise Even while government, as the 11 Putul Alok Prakash. Laws in India resources internally and exter- first duty bearer, is tending to ab- criminalise leprosy. OneWorld South Asia. nally from other local sources. To dicate its responsibilities towards 23 June 2008. Accessed on 20 May 2016, at: http://southasia.oneworld.net/Article/laws- this end she has to facilitate, co- people infected and affected by in-india-criminalise-leprosy ordinate and advocate the efforts leprosy, the Church’s faith-based 12 World Leprosy Day 2015: Renewing of various internal stakehold- health-care centres, as the visible commitment for a leprosy free world!. Edi- torial. Indian J Med Res 141, January 2015, ers (parishes, dioceses, religious faces of Christ’s compassionate pp. 1-4. Accessed on 20 May 2016, at: http:// Congregations and patients them- care and healing touch, have to icmr.nic.in/ijmr/2015/janaury/editorial1.pdf selves) and external stakeholders bear witness and inculcate Christ- 13 WHO Regional Office South East Asia. WHO launches new global strategy seeking (the government, Corporate So- inspired positive influence! The accelerated efforts to end leprosy. SEAR/ cial Responsibility (CSR), indi- Salt of the earth! (Mt. 5:33) PR/1623. vidual donors, etc.) at local, State ‘The biggest disease today is 20 April 2016. Accessed on 25 May 2016, at: http://www.searo.who.int/media- and national levels. not leprosy or tuberculosis, but centre/releases/2016/1623/en/ There is a need for government, rather the feeling of being un- 14 Aifoindia.org. Leprosy is a complex non-governmental organisations wanted, uncared for, and deserted challenge. Accessed on 25 May 2016, at: http://aifoindia.org/what-we-do/challen- (NGOs) and private organisations by everybody’ (Mother Teresa). ge/#.V0T0oDV97bg to work together to maintain con- 15 Gurvinder Pal Singh. Psychosocial stant vigilance, provide care and aspects of Hansen’s disease (leprosy). Indi- an Dermatology online Journal. Year : 2012 support, and remove legal and | Volume : 3 | Issue : 3 | Page : 166-170. other social taboos against people Notes 29-Sep-2012. Accessed on 17 May 2016, at: infected and affected by leprosy. http://www.idoj.in/article.asp?issn=2229- 1 Saji Thomas. Hansen’s disease, discar- 5178;year=2012;volume=3;issue=3;spage= The continued training and moti- ded from family, ostracized. Global Sisters 166;epage=170;aulast=Singh vation of medical officers, nurses, Report. A Project of National Catholic Re- 16 Aparna Pandey . Current perspectives physiotherapists and paramedical poter. 21 Jan. 2016. Accessed on 21-5-16, at: on leprosy as a public health challenge in In- workers in relation to quality di- http://globalsistersreport.org/news/ministry/ dia. Dove Press. 24 July 2015, Vol.2015:6, sr-julia-thundathil-serves-people-hansens- pp. 43-48. Accessed on 20 May 2016, agnosis and the treatment of lep- disease-discarded-family-ostracized-36381 at:https://www.dovepress.com/current-per- rosy is necessary.27 2 George D. O’Clock. ’s Leper. spectives-on-leprosy-as-a-public-health- The Church has to campaign for iUniverse, New York: 2005, p. 24. Acces- challenge-in-india-peer-reviewed-fulltext- sed on 21 May 2016, at: https://www.goo- article-RRTM the rights and entitlements of pa- gle.co.in/search?tbo=p&tbm=bks&q=is 17 Alves CRP, Ribeiro MMF, Melo EM, bn:0595351417 Araújo MG. Teaching leprosy: current chal- tients and their families. If neces- 3 sary, direct advocacy is needed Putul Alok Prakash. Laws in India lenges. An Bras Dermatol. 2014;89(3):454- criminalise leprosy. OneWorld South Asia. 9. Accessed on 25 May 2016, at: http:// against apathetic and corrupt po- 23 June 2008. Accessed on 20 May 2016, at: www.ncbi.nlm.nih.gov/pmc/articles/ litical forces which are unwilling http://southasia.oneworld.net/Article/laws- PMC4056704/ in-india-criminalise-leprosy 18 WHO Regional Office South East Asia. to allocate resources for socially- 4 WHO. Weekly epidemiological record. WHO launches new global strategy seeking economically marginalised and ex- No. 34, 2012, 87, 317–328. 24 August 2012. accelerated efforts to end leprosy. SEAR/ cluded leprosy patients and in or- Accessed on 21 May 2016, at: http://www. PR/1623 who.int/lep/situation/en/ 20 April 2016. Accessed on 25 May der to make their concerns known 5 Dr. G.P.S. Dhillon and Dr. B.N. Bar- 2016, at: http://www.searo.who.int/media- about by the general public. kakaty. Health Administrator Vol : XVIII centre/releases/2016/1623/en/ To perform this advocacy with Number 2 : 4-7. Accessed on 25 May 2016, 19 Bassey Ebenso, Aminat Fashona public integrity and to be a gen- at: http://medind.nic.in/haa/t06/i2/haa- and Co. Impact of Socio-Economic Reha- t06i2p4.pdf bilitation on Leprosy Stigma In Northern uine ‘Community Enabler’, the 6 Central Leprosy Division. NLEP – Pro- Nigeria: Findings of A Retrospective Stu- Indian Catholic Church has to re- gress Report for the year 2013-14. Directo- dy. Asia Pacific Disability Rehabilitation frain from being the ‘opportunis- rate General of Health Services, New Delhi. Journal. Vol. 18 No. 2. 2007 Accessed on Accessed on 21 May 2016, at: http://nlep. 25 May 2016, at: http://english.aifo.it/proj/ tic’ faces of Christ’s mercy who nic.in/pdf/Progress%20report%2031st%20 reports/2015/India_Nidadevole_Leprosy_ act only when and where there is March%202013-14.pdf Rehabilitation_Annual_report_2014.pdf 56 DOLENTIUM HOMINUM N. 90-2016

20 Thomas Gumbleton. What Jesus and num 2013; 81(1): 114-119. See also, Catho- olic Church in India. August 2005. Ac- leprosy can teach about marriage. National lic Bishops Conference of India (CBCI). cessed on 24 May 2016, at: http://www. Catholic Reporter. 16 Feb. 2012. Accessed Commitment to Compassion and Care: aidsdatahub.org/sites/default/files/docu- on 21 May 2016, at: http://ncronline.org/ HIV/AIDS Policy of the Catholic Church ments/Commitment_to_Compassion_and_ blogs/peace-pulpit/what-jesus-and-leprosy- in India. August 2005. Accessed on 24 May Care_HIV_AIDS_Policy_of_the_Catho- can-teach-about-marriage 2016, at: http://www.aidsdatahub.org/sites/ lic_Church_in_India_2005.pdf.pdf; see 21 Pope Francis, Evangelii Gaudium default/files/documents/Commitment_ also, CBCI Health Commission, Directory (The joy of the gospel). Apostolic Exhor- to_Compassion_and_Care_HIV_AIDS_ of Catholic Health Facilities in India, New tation. Vatican. Nov. 2013: 49. Acces- Policy_of_the_Catholic_Church_in_In- Delhi, 2003, pp. 18-31. sed on 26 May 2016, at: http://w2.vatican. dia_2005.pdf.pdf 26 Kim Barker. Caring for Leprosy Pa- va/content/francesco/en/apost_exhorta- 24 CHAI: Capacity Statement. Secunde- tients Is Out of Nuns’ Hands in India State. tions/documents/papa-francesco_esorta- rabad: The Catholic Health Association of Los Angeles Times. May 14 2006. zione-ap_20131124_evangelii-gaudium. India. Unpublished material. 20 May 2016. Accessed on 27 May 2016, at: http://arti- html#The_joy_of_the_gospel www.chai-india.org; see also, Catholic Bi- cles.latimes.com/2006/may/14/news/adfg- 22 CNS. Father Muller Charitable Insti- shops’ Conference of India (CBCI): The leprosy14 tutions. 2 Sep. 2010. Accessed on 26 May Catholic Directory of India 2013. Bangalo- 27 World Leprosy Day 2015: Renewing 2016, at: http://www.churchnewssite.com/ re: Claretian Publications. 25 Jan. 2014 commitment for a leprosy free world!. Edi- portal/?p=28100 25 Catholic Bishops Conference of In- torial. Indian J Med Res 141, January 2015, 23 Moras BB. Asia: Catholic Hospitals in dia (CBCI). Commitment to Compassion pp. 1-4. Accessed on 20 May 2016, at: http:// a Challenging World. Dolentium Homi- and Care: HIV/AIDS Policy of the Cath- icmr.nic.in/ijmr/2015/janaury/editorial1.pdf

2. The Pastoral Project for People with Leprosy in the Diocese of Bunia in the Democratic Republic of the Congo

SISTER JEANNE CÉCILE We are dealing here with main- change in behaviour, through ac- NYAMUNGU ATIMNEDI taining and strengthening the tivity involving nutritional reha- Medical doctor, chain of continuity of care for the bilitation and food security etc. Coordinator of the Diocesan most vulnerable in a spirit of true It has to assure continuity and Offices for Medical Works, solidarity and the sharing of risks. growth in its medical agencies BDOM, Bunia Catholic Diocese through healthy and rigorous management in an atmosphere of The Mission of BDON/Bunia sincere partnership In relation to other organisations BDOM/Bunia is one of the that offer health-care services, it The Vision of the BDOM/Bunia four commissions of the diocesan has to have the following compet- Caritas-Développement. This is a itive advantages: sound credibility The quality of care of BDOM non-profit making association of with the state and donors; and the centres around integral care for the diocese. trust of that part of the population man at the level of his body, his It has adopted the national pol- attracted by Christian moral val- soul and his spirit – the basis of icy of primary health care with ues: love for neighbour, sharing, the wellbeing and overall health a view to obtaining ‘Health for solidarity, justice, etc. of every human being. Everybody’, a policy in harmony Today more than yesterday, and with the social pastoral care of the yesterday more than today, the Church. The Mandate of BDOM/Bunia BDOM will continue to give hope The BDOM has to meet the to the population of the Province health-care needs of the commu- BDOM/Bunia is a service of of Ituri, providing health care of nity of the city of Bunia and its the diocese of Bunia that is en- high-quality that is impregnated hinterland through the various ser- trusted with coordinating all ini- with human attention and char- vices that it has developed in order tiatives begun in the health-care ity, with greater attention being to foster: treating the sick: general sector by the diocese for the pop- addressed to the most vulnerable, and specialist health care; the pre- ulation of the Province of Ituri. In including lepers and people with vention of illnesses: vaccinations, this capacity it is entrusted with: tuberculosis, in order to combat health-care education, etc.; and the planning, coordinating, supervis- all the scourges that afflict and promotion of health through com- ing and assessing the activities of undermine families. munication in order to achieve a the health-care agencies of Bu- DOLENTIUM HOMINUM N. 90-2016 57

nia; assuring the supply of essen- commissions, respecting the eth- rosy through treatment and holis- tial medical products, laboratory ics of the Catholic Church and the tic care. These people had been products and current medical ma- labour laws in force in the Demo- abandoned without treatment and terial; and supervising the admin- cratic Republic of the Congo. food after independence and were istrative and financial manage- These commissions are the fol- helped by the Help for Lepers ment of medical agencies with a lowing: Project of Ituri (ALI). view to achieving self-financing. The Diocesan Office for Devel- In 1970 the government of Zaire opment (BDD) whose mandate is created the National Leprosy Of- 1. The Diocese of Bunia: to contribute to the lasting eco- fice whose mandate was to coordi- a Profile nomic and socio-cultural devel- nate the programme for leprosy at opment of the population. a national level. In 1980 the World 1.2. Its geographical location The Diocesan Office for Medi- Health Organisation recommend- The diocese of Bunia is locat- cal Works (BDOM) which is en- ed the integration into this pro- ed in the north-east of the Demo- trusted with organising and ac- gramme of care for tuberculosis cratic Republic of the Congo and companying activity connected because it perceived the similarity it is in the Province of Ituri. It in- with health care for the popula- of these two pathologies. The pro- cludes the territories of Djugu, tion. This includes curative, pre- gramme then became ‘Help for Irumu and a small part of the ter- ventive and predictive medicine. Lepers and People with Tubercu- ritory of Mambasa, and it covers The Diocesan Office for Soli- losis in Ituri’ (ALTI). twenty-three health-care areas of darity and Sharing (BDSP), an Leprosy is a neglected tropi- the Province of Ituri. office for the promotion of assis- cal disease (NTD) which re- The diocese of Bunia has tance for vulnerable groups and quires intensive therapy. In some twelve parishes and five autono- individuals. countries it remains a problem mous sectors. To the north it has The Diocesan Office for Justice of public health. Thanks to poly- a boundary with the diocese of and Peace (CDJP), an office for chemotherapy some countries are Mahagi-Nioka, to the west with the promotion of human rights, moving towards its elimination. the diocese of Isiro-Niangara, to peace and reconciliation. In the year 2014 about 200,000 the south-east with the diocese new cases were registered in the of Beni–Butembo, to the south- world, of whom about 20,000 west with the diocese of Wamba, Leprosy: a Profile were children. 94% of cases are to and to the east with Lake Albert, be found in thirteen countries in which separates it from Uganda. 1. Introduction Asia and Africa (India, Indonesia, It has a surface area of 22,470 Brazil, the Democratic Republic km2 and an estimated population Leprosy is a skin disease which of the Congo, Ethiopia, Madagas- of 2,512,760 inhabitants with a has been known about since an- car, Nigeria, Tanzania, etc.). density of 112 inhabitants every tiquity – six hundred years before The Democratic Republic of square kilometre. It should be ob- Christ. For a long time this disease the Congo reported 5,000 new served that there has been a strong was seen as a disease to be stigma- cases in the year 2009. This was population increase since the exo- tised, a curse, and it could involve the country that had the highest dus from the rural areas that was a person’s exclusion from society. number of people with leprosy in caused by the armed conflicts. Raoul Follereau denounced the Africa (18% of cases). Water: various areas of wa- fate of lepers closed up in leper The prevalence of leprosy is ter are to be found in the diocese colonies for the first time to the still high in the Provinces of Ka- of Bunia, the most important of United Nations. This led to the es- tanga, Bandundu, Equateur and which are Lake Albert and the tablishment of the World Leprosy the old Eastern Province (Ituri, rivers Ituri, Shari, Nizi, Ngezi, Day in 1954. Haut Uélé, Bas Uélé and Tchopo). Abombi and Tsé. Action Damien was created in In Ituri, the number of cases was Access: the diocese of Bunia 1964 by various associations in estimated in 2013 at 208, in 2014 can be reached by air, by road and Belgium. Subsequently, in 1966, at 157 and in 2015 at 267. by boat across Lake Albert. as a result of the pressure exer- cised by Action Damien, inter- 2. Goals 1.2 Caritas-Développement: national cooperation led to the a profile creation of the International As- – To demonstrate to the world Caritas-Développement is a sociation of Associations for the the extensive presence of leprosy technical institution of the dio- Fight against Leprosy. in the Democratic Republic of the cese of Bunia whose aim is to im- Missionaries of the Catholic Congo and in the Province of Ituri plement the pastoral mission of Church established three cen- in particular. the Catholic Church in line with tres for lepers in Ituri: in Badiya – To describe the aetiological its statutes and the goals that they (1965), in Bunia (1966), and in agent of leprosy. set out, amongst which are the Aru (1970). These developments – To describe the epidemiologi- promotion of integral human de- were supported by Aktion Can- cal state of leprosy. velopment. Caritas-Développe- chanaburi, an independent Ger- – To describe the clinical signs ment in the diocese of Bunia car- man NGO whose aim is to reduce of this disease. ries out its mission through four the suffering of people with lep- – To list the elements that are 58 DOLENTIUM HOMINUM N. 90-2016

needed for a diagnosis of leprosy Leprosy is a disease that is not of the world. The elimination and its treatment. very contagious and man is the on- of this disease has still not been – To describe the strategies of ly creature to be afflicted by it. On- achieved, even though the world the fight against leprosy of the ly one person with leprosy in eve- prevalence rate has decreased, country and the Catholic Church. ry ten is contagious; when treated, going from 8.4/10,000 in 1966 that person quickly becomes no to less than1/10,000 since the 3. Methodology longer contagious (48 hours). On- end of 2000. The number of new ly five individuals in every hun- registered cases has been falling: – Individual reading. dred individuals who are exposed 407,791 (2004); 258,133 (2007); – Review of the literature. to the disease actually contract it. 219,075 (2011); 181,941 (2012). – Research on internet. This disease is strongly endem- – Papers during plenary assem- 4.3. Epidemiology ic in some regions of Brazil, In- blies. The World Health Organisation dia, Indonesia, Madagascar, Mo- established the elimination of lep- zambique, Nepal, the Philippines, 4. Contents rosy as a problem of public health the Democratic Republic of the by the year 2005. The prevalence Congo, and the United Republic 4.1. Definition had to be <1/10,000 inhabitants of Tanzania. Leprosy is a transmissible in- fectious disease caused by My- crobacterium leprae (M. leprae) Table 1. Registered prevalence of leprosy and number of new cases or Hansen’s bacillus, which was in 105 countries and territories by WHO region in 2011 discovered 1873. This disease af- and at the end of the first quarter of 2012 flicts the skin, mucous liquids, the (with the exception of the region of Europe) peripheral nervous system, the eyes, and according to the cellular WHO region Number of Number of identified immunity of the individual who is registered new new cases (level infected it takes different clinical cases (prevalence of screening of forms. for every 10,000 new cases for The World Health Organisa- inhabitants*) first every 100,000** tion defines leprosy as when an quarter 2012 inhabitants) in 2011 individual has evident diagnostic signs of the disease, with or with- Africa 15,006 (0.37) 12,673 (3.14) out bacteriological confirmation, Americas 34,801 (0.40) 36,832 (4.18) and needs to follow a specific Eastern Mediterranean 7,368 (0.12) 4,346 (0.71) treatment. South-east Asia 117,147 (0.64) 160,132 (8.75) Western Pacific 7,619 (0.05) 5,092 (0.30) 4.2. The aetiological agent Total 181,941 (0.34) 219,075 (4.06) Mycrobacterium leprae, or Hansen’s bacillus (described by Hansen in Norway in 1873), is * In brackets: prevalence for every 10,000 inhabitants a resistant-acid-alcohol of 1 to ** In brackets: prevalence for every 100,000 inhabitants 8 μ/0,3 μ that becomes coloured when the Ziehl-Nielsen method is Table 2: The epidemiological situation of leprosy in the Democratic used. It is intracellular (penetra- Republic of the Congo tion, multiplication) and cannot be cultivated in vitro. It cannot be in- Year Prevalence Identified Children/NC Infirmity 2/NC oculated into mice or armadillos. Its transmission is direct: through 2003 7,173 7,472 ,963 ,912 the nose (secretions, saliva, aero- 2004 10,567 11,797 1,499 1,252 sols). Indirect transmission is pos- sible through contaminated ob- 2005 9,932 10,776 1,329 1,042 jects. The pathways of penetration 2006 8,275 8,257 ,902 ,784 of this disease are essentially the respiratory pathways, both incom- 2007 6,502 8,820 1,074 ,743 ing and outgoing. Just one sneeze 2008 4,851 6,115 ,804 ,614 of a person with leprosy who has 2009 4,290 5,131 ,596 ,524 not been treated can contain more than 10 M. BAAR. The cutaneous 2010 4,129 5,097 ,562 ,557 pathway is secondary. This dis- 2011 3,625 3,949 ,442 ,436 ease is principally rural in its in- cidence. Its incubation period is 2012 3,492 3,651 ,383 ,526 long (from two to seven years) if 2013 3,650 3,744 ,452 ,471 not indeed twenty-five years. It af- flicts all ages and both sexes. 2014 3,231 3,272 ,410 ,482 DOLENTIUM HOMINUM N. 90-2016 59

Although in seven Provinces nea because of paralysis of the malady: polychemotherapy. Epi- of the Democratic Republic of cranial nerves that can lead to demiological monitoring is also the Congo the elimination of lep- blindness. 4. At the level of the required: the gathering of data by rosy has been registered, the sit- testicles there can be: orchitis, the RECO starting with commu- uation remains worrying in four aspermia, hypospermia, impo- nities. Operational research also Provinces of the country. These, tence and sterility. has an important role to play. on their own, provide more than a half of notified cases: Bandun- 4.5. Clinical diagnosis 4.8. Problems and challenges du, Equateur, Katanga and the an- The clinical diagnosis of lep- The problems and challenges cient Eastern Province. rosy involves: hypopigmented are: low financial support from The impact of leprosy on the marks on the skin, nodules or the government for the pro- body principally involves handi- papules. 1. According to the num- gramme, low motivation of the caps: mutilations, deformations, ber of marks, leprosy is classified personnel in the field, only a par- and blindness because the disease as paucibacillary (from 1 to 5 cu- tial fight, and a lack of products at attacks the peripheral nerves. taneous lesions); multi-bacillary the level of institutions. (more than 5 cutaneous lesions). 4.4. Clinical symptoms 2. These marks are insensitive to 4.9. Future prospects The incubation of the disease surface palpation, with hypertro- Future prospects relate to the is generally two to seven years, phy of the cubital nerves and ex- mobilisation of funds to support if not at times twenty-five years. ternal popliteal sciatica. Signs of the leprosy project; a strength- The principal clinical expres- complications are: mutilations, ening of the capacity of the DPS sions of the disease are: hypopig- anosmia, sterility and impotence. teams and suppliers in order to mented or hypoesthetic macules; The bacteriological diagnosis in- achieve a better treatment of cas- asymmetrical hypertrophy of one volves a search for m. leprae in es of leprosy and avoid compli- or more of the peripheral nerves; the nasal mucous liquid and the cations; motivating the RECO and red-yellow or slightly erythe- cutaneous lesions. Histopatholo- to achieve a systematic orienta- matous papules or patches that gy: biopsies. tion; and fostering operational re- can come together to produce le- search. ontiasis. 4.6. Treatment The marks due to leprosy can Treatment is based upon poly- appear anywhere…they do not chemotherapy (PCT). For leprosy Conclusion cause pain…they do not itch… PB: six capsules of PCT BB (ri- and they are insensitive to fampicin + dapsone). Duration: Notable progress has been warmth, touch or pain. Leprosy 6-9 months; six capsules. For lep- achieved in the fight against lep- can be diagnosed simply, starting rosy MB: twelve capsules of PCT rosy thank to the national and lo- with its clinical symptoms. MB (rifampicin, dapsone and cal campaigns that have been pro- The following are some of the clofazimine). Duration: 12-18 moted in most countries where determining causes of leprosy: months; twelve capsules. Treat- the disease is endemic. poverty, a lack of hygiene and ment in the case of complications The integration of essential ser- promiscuity (‘leprosy withdraws (deformed sole of the foot, dam- vices in the fight against leprosy in the face of progress’); a genetic age to peripheral nerves, etc.). that form a part of general exist- susceptibility to m. leprae (family The treatment is effective when ing health-care services has facili- cases); living in areas where the there is an early identification of tated the diagnosis and treatment disease is endemic; repeated and the disease. of this disease. close contact with a multi-bacil- Other countries have still not lary patient. Rapid diagnosis and 4.7. Strategies for defeating managed to eliminate leprosy, treatment prevent invalidating leprosy in particular the Democratic Re- forms. The principles are well known public of the Congo and the four The principal complications of but they have not followed up eastern provinces of that coun- leprosy: 1. at the level of limbs: by the production and use of in- try in particular. If this disease is drooping hands, monkey hand, struments to achieve a complete not treated it can involve progres- deformed soles of the feet. The fight against leprosy. Prevention: sive and permanent lesions of the infection of this ulcer leads to this involves sensitisation by the skin, the nerves, the limbs and the cellulitis or adjacent osteomyeli- RECO (Relais communautaires); eyes, thus turning a good number tis. Mutilation of the fingers and the identification (screening) of of people who are useful for soci- of the toes. 2. At the level of the the disease and its swift treat- ety and the Catholic Church into nose: chronic nasal congestion ment, with the psycho-social rein- invalids. and epistasis, destruction of the tegration of people who have had All of us are invited to roll up nasal septum and anosmia. 3. At leprosy. Also important is train- our sleeves to save our brothers the level of the eyes: lagophthal- ing of the RECO, IT, ECZS. We and sisters, who are in the image mia and insensitivity of the cor- need curative treatment of this of Christ. 60 DOLENTIUM HOMINUM N. 90-2016

3. Testimony about Leprosy

FATHER GIORGIO ABRAM, rosy in Ghana. The strategy that Very many stories, my own di- OFM CONV was adopted to win the trust of the rect experiences or experiences Priest, medical doctor authorities and patients involved of patients who confided in me, and missionary, close cooperation with the author- stories of pain, of marginalisa- Italy ities of the country and with the tion, but also stories of a human- local medical personnel; provid- ity wounded but never defeated, ing basic health-care education; emerged and above all during the hen I arrived in Ghana in dismantling the leper colonies; precarious initial situation. W1977 the situation as re- and placing the anti-leprosy pro- Like the story of Abu, a boy gards leprosy in the country was gramme within the framework of aged twelve afflicted by the dis- tragic: mutilated and neglected basic medicine, as well as home ease and accompanied by his fam- patients who did not have an op- treatment of the disease – this was ily relatives to a healer who, at portunity to obtain access to treat- unconfutable proof that it was the end of all her divinations, de- ment; treatment, for that matter, at possible to be cured of leprosy. clared that in order to be cured the that time was more an attempt to Said in a single sentence, these boy had to be taken to the white control the disease than a secure things may appear simple and doctor. Abu is now forty; he has a way of curing it! Above all else, easy to put into practice, but in family and a shop that sells vari- they were patients marginalised reality I have dedicated to them ous things, a sort of miniature vil- by society, concentrated in hospi- more than a half of my life and lage supermarket. tals, emergency refuges, villages they have required the same time Or the story of Abdullah, an old for lepers…about fifty thousand and energy from those who have former patient of the north of the patients of whom only a half reg- worked with me. country. After a violent storm he ularly received dapsone, the on- I believe that I can state that the drew near to the fire to get dry ly medicine that was available at beginning of the final defeat of and because of a lack of feeling that time for this disease. leprosy, the winning card, was the in his feet he scorched them. Be- And this state of affairs, un- shift of our attention from the dis- cause he had to continue working fortunately, was a reflection of ease to the patient, when, that is at his mill to maintain his fam- the general health-care situation to say, we managed to place the ily, he dragged himself along on which, like for that matter the person of the patient at the centre his knees every day until a nail whole of the socio-political sub- of our concern. pierced a knee. Together with a stratum, was in a very bad condi- In my work I have been in- woman nurse, we found him suf- tion because of the corruption that spired by two great personalities: fering from a high fever in his had followed in the wake of the Fr. Damiano De Veuster, who hut. We treated him and once he euphoria of independence which has since been declared a saint, had got better he went back with had just been obtained. after in my seminary I saw the peace of mind to his job. When re-reading the Biblical film ‘Molokai’; and St. Francis Or the story of Dadi, a boy worn episode of the Assyrian, I who in his testament for his fri- out by what is commonly called find a close similarity with the an- ars said: ‘When I was still full of children’s leprosy (Buruli ulcer). ti-leprosy programme of Ghana: sins it seemed to me to be terrible We met him for the first time when patients who did not believe that to see lepers. But the Lord led me he was sitting down in front of his they could be cured and patients amongst them and I did deeds of hut, wrapped in a ragged blan- who did not want to be cured! mercy with them. And in drawing ket, with a swollen face and only This attitude, which for us is in- away from them what before had his right hand free to ward of the comprehensible, had its roots, and seemed to me to be horrible, was swarm of mosquitos attracted by found its justification, in the belief transformed into tenderness of the terrible smell that beset the that leprosy was caused by curs- soul and body. And I was short- whole scene. Once the faded rags es or by supernatural intervention. ly to abandon the secular state’. he was wearing had been removed, This, naturally enough, led those The vocation of Francis was born I found an example of poor human- with the disease to turn more to in his encounter with people with ity in decomposition. Old wounds witchdoctors than to medical doc- leprosy. had already consumed the bones of tors. I am therefore convinced that his knees and various scars with- Given that I lived in a mission to work with lepers is an authen- out pigment indicated the places near to a leper colony, I believe tically Franciscan vocation. Cer- where the wounds had closed. But that I was very fortunate: after tainly, this work of mine for the there were also new wounds; they the initial indifference of the local poorest, engaged in as a service to were open, rotting, evil-smelling, authorities, I was accepted as the the Ministry of Health of Ghana, and spread all over his body. From coordinator of the national pro- has defined our presence as Fran- his parents I obtained their con- gramme for the treatment of lep- ciscans in the country. sent to go with me with Dadi to the DOLENTIUM HOMINUM N. 90-2016 61

hospital – it was a very hard strug- And a story which touched my and walked naked on the ground gle but in the end we won togeth- innermost being: that of a very to reach his poor chicken coup. er. Now Dadi has a school diploma elderly patient who displayed all He had four chickens that he had and works in his village. the damage that had been caused to look after. “What is more im- Or the sad story of an old moth- to him by the disease in an evident portant: your foot or your four er with a family in Yendi. We way, including to his face: he had chickens?”, I asked him severely. had had to amputate her right leg nodules and examples of tume- And in reply he gave me a dis- above the knee which already had faction, what in jargon is called a arming smile: “I can live without gangrene. After recovering com- ‘lion’s face’. He had a large and a foot but not without my chick- pletely she went back to her vil- inexpressive face because the ens!” lage. I went to visit her one day disease had damaged his facial And to end, a little tale. I will as I was passing through that area. nerves. He had come to the clinic read from a book published a She was well, she was well looked accompanied by a granddaughter few month ago by Edizioni Mes- after by a young granddaughter of but when he saw me he became saggero of Padua, Quattro Gatti hers in a clean hut. “We will not agitated. The matter worried me senza Storia (‘Four Cats without see each other again”, she said because I did not understand his a History’) which is a collection as I was leaving. A few days lat- language, Ewe, which is spoken of some of my ‘semi-serious’ er she died: she could bear to be in the far South-East of Ghana. thoughts. Often the people who seen going round without a leg. His granddaughter went away talk to me have a doubt: “but is Or the happy result of another and they explained to me that the leprosy contagious?” I prefer amputation. A friend of mine who patient wanted me to see his pho- to define it as an infectious dis- is a photographer immortalised a tograph which he kept in a frame ease but this in practical terms is moment when Yaw and I, hand in at home, a photograph of ‘when the same thing. And then curios- hand, were talking to each other. he was a handsome man’. What ity comes forth: “have you ev- Yaw was a patient with evident moved me the most was the great er caught it?” When I was much signs of untreated leprosy, con- joy that I saw in his black eyes younger, during the first years of valescing after the amputation of when he held that portrait in his my work in Ghana, a dear secre- his leg below the knee. He was hands. The disease may have dis- tary of the Italian anti-leprosy or- speaking in a calm and peaceful figured him, but it had not taken ganisation always repeated to me: way about his plans for the future. away his joie di vivre! “if you get leprosy, we will write He would have liked to go on be- And a story which seems to me a book about you, and they will ing a tailor but he needed a new to me to be an anecdote, that of a make you a saint”. I got leprosy, sewing machine. Some Italian young man who had had an op- I had it treated, and I recovered, friends of mine gave him one: he eration on his foot to remove a bearing as a memory of it a wide- went back to his village and con- grave ulcer on the sole. He had to spread loss of feeling in my left tinued with his profession, helped stay in bed but he got up secretly foot. Nobody has ever written a by his family and assisted by our and so as not to be surprised by book about me, and they will cer- district nurse. someone he took off the bandages tainly never make me a saint. 62 DOLENTIUM HOMINUM N. 90-2016

Conclusions and Recommendations

FATHER MICHELE ARAMINI has been accumulated over recent ters into contact with a sick per- Professor of Theology, decades by leprosy experts, med- son without any fear of contagion the University of ical doctors and health workers or impurity, and heals and reinte- the Sacred Heart, in relation to Hansen’s disease. grates people into the communi- , Italy Grants for study and training may ty. Even more, he himself accepts be needed for service providers being treated as if he had leprosy. and caretakers including persons The example of Christ has often he international symposium affected by the disease. Here, not been followed—this neglect Ton the topic, “Towards Holis- the principle, “Nothing about us enables us to understand that it tic Care for People with Hansen’s without us” should be respected, is easier to eliminate the disease Disease, Respectful of their Dig- and this is an important way of at a medical level than the social nity,” was jointly organized for fighting against the stigma that is prejudice that surrounds it. In this June 9 to 10, 2016, at the Vati- associated with Hansen’s disease. sense, it is absolutely necessary can City by the Pontifical Coun- A number of valuable recommen- that we place the human being at cil for Health Care Workers, the dations in the presentations con- the centre of all medical activity, Good Samaritan Foundation and cerned methods to improve early rather than, as is often the case, the Nippon Foundation in coop- diagnosis and promote the social placing the disease at the centre eration with the Raoul Follereau integration of persons affected by of attention. Foundation, the Sovereign Order leprosy. Public and private insti- It is the teaching of Christ of Malta and the Sasakawa Me- tutions should work in close co- which has led Christians, espe- morial Health Foundation. These operation with health authorities cially over the last two centuries, Conclusions and Recommenda- in each country to provide med- to develop a high level of care and tions were presented at the end of ical and health personnel with treatment for people with Hans- the two-day symposium and were basic education about leprosy in en’s disease. This took place even approved in principle by the or- order to strengthen leprosy pro- before pharmacological thera- ganizers and the participants who grams within the framework of pies were available, when care were present. general health services. Efforts involved accepting and rescuing Note: While the terms “Hans- should be made to reintegrate people and ending their state of en’s disease” and “leprosy” are communities of persons affected abandonment. There is no need used interchangeably in this doc- by leprosy into society. The mes- to recall here the giants of char- ument, in some countries the pre- sage that leprosy is curable and ity who were dedicated to this ser- ferred term is Hansen’s disease. can be treated while the patient vice. Today, as well, the Catholic continues to live at home should Church remains strongly commit- be emphasized. ted in almost all countries where Conclusions the disease is found to provid- 2. Every case of stigma and ing medical and humanistic care. 1. Every new case of Hansen’s social exclusion is one case too Here a pathway opens up of co- disease is one case too many. It many. Stigma is often associat- operation with religious commu- has been observed that new cas- ed with a religious vision of life nities of other faiths and with all es of Hansen’s disease are on the and it would be advisable to re- men and women of good will. decrease and we should be very vise this belief. In reality, stigma It is the shared opinion of ex- happy about this. But this de- has been linked from the earliest perts who work in the field of crease, which is in itself posi- times with fear of a disease that Hansen’s disease that the elimina- tive, could have resulted from a cannot be defeated. Biblical texts tion of the stigma attached to lep- decline in case-finding activities of the Old Testament themselves rosy requires an important work and reduced community aware- record a practice of exclusion of education that must involve all ness. The increase in the rate of that was present in Egyptian, As- social groups and in particular re- disabilities in new cases detected syrian-Babylonian and Canaanite ligious communities because they seems to support this explana- cultures during the second mil- promote respect for human digni- tion. Therefore, it is essential to lennium before Christ. The same ty throughout the world. aim at early detection. This ap- fear is to be found in non-Chris- plies to all new cases, but partic- tian and non-religious contexts. 3. Every law that discriminates ularly to child cases. The WHO’s The teaching of Christ in the New against people affected by Hans- Global Leprosy Strategy 2016- Testament, first of all, breaks, en’s disease is one law too many. 2020 is moving in this direc- with great clarity, the connec- Following intensive work, the tion. A second cause for concern tion between illness and sin (John General Assembly of the United comes from the substantial risk 9:2-3). Secondly, Jesus Christ Nations in December 2010 adopt- of partly losing the expertise that touches people with leprosy, en- ed a resolution on the Elimina- DOLENTIUM HOMINUM N. 90-2016 63

tion of discrimination against per- zations and national human rights tion is available even in countries sons affected by leprosy and their institutions. To this end, the IWG where leprosy is not an issue, in family members, accompanied recommended the institution of a order to eliminate the myths sur- by ‘Principles and Guidelines’. follow-up mechanism at an inter- rounding this disease. The resolution and ‘Principles national level which would have and Guidelines’ constitute a mile- the mandate to follow up the ac- stone in the upholding of the hu- tions of States and other stake- Final Recommendations man rights of persons affected by holders, drawing upon the expe- Hansen’s disease. One must take rience of Special Rapporteurs on Two Introductory Points into account that for every person various topics of human rights with the disease, his or her family appointed by the United Nations 1. Persons affected by Hans- members and even relatives may Human Rights Council, or com- en’s disease must be seen as the also be ostracized due to the stig- mittees of experts which moni- main actors in the fight against ma attached to leprosy, resulting in tor the implementation of inter- this disease and the discrimina- a serious violation of fundamen- national human rights treaties tion it causes. This involvement tal human rights. An enormous and conventions. This follow-up is a powerful instrument for the amount of work still has to be work must not be neglected, oth- recognition of their equal digni- done by governments and social erwise there will be no percep- ty and rights for social inclusion, and religious institutions to ensure tion of progress or steps back. and for the breaking of the stigma that these ‘Principles and Guide- Accordingly, in the Resolution attached to them. This point ap- lines’ are fully implemented. adopted by the UN Human Rights plies to all of the recommenda- Unfortunately, various forms Council on 2 July 2015, the UN tions listed below. of discrimination continue to ex- Human Rights Council Advisory 2. The use of discriminatory ist in many parts of the world Committee is requested to submit language that reinforces stigma which bear upon all spheres of a report containing practical sug- must cease, in particular, use of life: schools, workplaces, social gestions for the wider dissemi- the term ‘leper’ and its equiva- groups, public places, religious nation and more effective imple- lent in other languages. This term centres, restaurants, hotels, trains mentation of the ‘Principles and is offensive for the reasons stated and other means of transport. Es- Guidelines’ at the 35th session of above and also because it defines pecially grave are the violations the United Nations Human Rights a person by his or her illness. Use of the rights of persons affected Council in June 2017. of the term “leprosy” in a meta- by leprosy in the field of educa- The IWG has observed, in par- phorical sense should be avoided. tion, work, and marriage. The ne- ticular, the need for civil socie- cessity to repeal discriminatory ty and religious communities to laws that impede fundamental hu- use dignified terminology when Five Recommendations man rights is very urgent and can speaking about Hansen’s disease. no longer be postponed. It has been observed that the old 1. Given their important role Implementation of the ‘Prin- perceptions of leprosy continue in their respective communities ciples and Guidelines’ requires to be reinforced by inappropri- of believers, the leaders of all constant work involving the sen- ate language. The offensive term religions—and this is an impor- sitisation of governments and so- ‘leper’ as a description of some- tant and urgent matter—should, cieties. To this end, in 2012 the one with leprosy evokes a mar- in their teachings, writings and Nippon Foundation created a ginalised person, a sinner, or a speeches, contribute to the elim- working group (the International person who is rejected by other ination of discrimination against Working Group, hereafter IWG), people for moral or social rea- persons affected by leprosy by which had the aim of assisting sons. This terminology contrib- spreading awareness that lepro- the process of implementation of utes to discrimination against per- sy is curable and stressing that the ‘Principles and Guidelines’. sons affected by leprosy and even there is no reason to discriminate The IWG prepared a 'Suggested discourages those who need treat- against anyone affected by lepro- Framework for National Plans of ment from seeking help. The IWG sy or members of their families. Action' for States to use in their has thus invited religious leaders 2. States and governments own domestic contexts. and their communities to reflect should be encouraged to make The IWG came to the con- upon the best ways of express- great efforts to implement the clusion that the ‘Principles and ing themselves in language that ‘Principles and Guidelines’ ac- Guidelines’ were more likely to is able to transmit respect for per- companying the resolution adopt- be effective if States were called sons affected by leprosy. Aware- ed by the General Assembly of upon to undertake specific ways ness-raising activities at the glob- the United Nations in 2010 on of implementing them, which al level should make full use of Elimination of discrimination could then be brought to the at- new media to inform people about against persons affected by lep- tention of various governmen- advances in treatment of leprosy rosy and their family members. tal offices and communicated to and the fact that people who are These ‘Principles and Guidelines’ relevant UN bodies, specialized under treatment or have complet- must be fully implemented, other- agencies, funds and programmes, ed treatment are not infectious. wise they will remain just empty other intergovernmental organi- It is important that this informa- proclamations. 64 DOLENTIUM HOMINUM N. 90-2016

3. There should be a modification because of the fact that he or she nation it causes, the efforts of all or abolition of all laws and regula- has, or once had, leprosy. the Churches, religious communi- tions that discriminate against per- 4. There is a need for further ties, international organizations, sons affected by leprosy. Policies scientific research to develop new governments, major foundations, relating to family, work, schools, medical tools to prevent and treat NGOs, and associations of per- or any other area which directly or leprosy and its complications, and sons affected by leprosy which indirectly discriminate against per- to achieve better diagnostic meth- have hitherto contributed to the sons affected by leprosy must al- ods. fight against this disease should so be changed, recognising that no 5. In order to achieve a world be unified and joint plans of co- one must be discriminated against free of leprosy and the discrimi- operation should be developed.