Convegno Internazionale "Per una cura olistica delle persone affette dal Morbo di Hansen rispettosa dela loro dignità" - holyseeforhealth

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Convegno Internazionale "Per una cura olistica delle persone affette dal Morbo di Hansen rispettosa dela loro dignità"

Pubblicazioni > Notiziario

Giovedì 9 giugno 2016

10:45 Il morbo di Hansen: dati epidemiologici e scenari futuri
Dott. Erwin Cooreman

Responsabile del “Global Leprosy Program”, OMS (India)

Hansen’s Disease: Epidemiological Data and Future Scenarios
Erwin Cooreman, Team Leader, Global Leprosy Programme, World Health Organization

Leprosy or Hansen’s Disease is the oldest disease known to mankind. Even today many fundamental questions are yet to be answered. Leprosy has been and often remains a cause of curse.
The current disease burden has come down significantly compared to a few generations ago and the number of countries with significant leprosy cases is dwindling. At the end of 2014, there were 174,554 patients on treatment worldwide, translating in a prevalence rate of 0.24 per 10,000 people. This is below the threshold of elimination as a public health problem, which is 1 per 10,000. The global prevalence has come down with more than 90% since 1985 largely due to the introduction of multidrug treatment. The number of new cases has come down too, but remains important: in 2014, 213,899 new cases were notified to WHO, corresponding to 3 per 100,000 people. Thirteen countries reported more than 1000 new cases in 2014.
A stagnation in the control of Hansen’s Disease appears, which may be due to loss of programme focus in countries after achieving elimination. Many new cases remain undetected or are detected late after irreversible deformities have occurred. This favours continuing transmission.
A new Global Leprosy Strategy covering 2016-2020 has been developed. It is centred among three pillars: (1) Strengthening government ownership, coordination and partnerships; (2) Stop leprosy and its complications; and (3) Stop discrimination and promote inclusion. It emphasizes the responsibilities of governments as well as partners, the need to sustain expertise in a rapidly changing context, the importance of involving persons and communities affected by leprosy and prioritize the most vulnerable populations. There is an obvious link with promoting basic human rights of leprosy patients.
Successful implementation is expected to further reduce the leprosy burden, in order to move towards a world free of leprosy.


11:15 Lotta contro la lebbra: sfide e strategie attuali
Dott. Marcos Virmond

Presidente “International Leprosy Association” (Brasile)

The Fight against Leprosy: Current Challenges and Strategies
Marcos Virmond

When the advances in medical sciences are considered, it is intriguing that leprosy reaching the twenty first century continues to affect large proportions of world population. After the introduction of sulphones to treat the disease it was obvious by the mid-1970s that the efforts to control leprosy using dapsone monotherapy were failing due to increasing resistance to drugs. Due to the substantial progress in leprosy control achieved by implementing MDT, the World Health Assembly (WHA) in 1991 called for the "elimination of leprosy as a public health problem by the year 2000". The WHO elimination strategy can thus be considered as the most remarkable and controversial event in leprosy control since the adoption of the compulsory isolation of cases. However, despite the relevant achievements, we reach the 21 st century with leprosy still affecting people in many countries in the world. Nowadays, leprosy still presents further challenges and new strategies are required to cope with the remaining burden of the disease. Among them we can mention the most important ones: (i). Potential lack of governmental commitment to maintain the control due to the encouraging results of the MDT elimination strategy; (ii) Lack of Clinical expertise in leprosy following the dramatic reduction in its prevalence due to WHO recommended MDT; (iii) Measures to interrupt transmission of the disease, which shows a stable detection rate in many endemic countries. Apart from the conventional actions for early diagnosis and adequate treatment, preventive measures such as the recent LPEP strategy– Leprosy Post-Exposure Prophylaxis – is an effective answer to this need; (iv) an effective vaccine, although difficult to attain, would support the interruption of the chain of transmission of the disease; (v) Early diagnosis and adequate treatment before onset of disabilities. despite the technological and scientific advances in leprosy, is still the most effective way to prevent leprosy related disabilities and to interrupt transmission; (vi) Research continue to be a core activity in leprosy since many challenge remains unsolved in different fields of the disease; (vii) Stigma and discrimination has been historically linked to leprosy. From the patient’s perspective, they may affect individuals and their families. From the medical side, stigma and discrimination are potential factors to prevent presentation of cases to diagnosis and adequate treatment, leading to increased opportunity for transmission of the disease. Therefore, fighting stigma and discrimination is a urgent need to be addressed by governments, national and international societies working with leprosy. In summary, If one studies the burden of leprosy since the ancient times to the 21st century one cannot deny the tremendous improvements achieved in the treatment and control of the disease. However, in the centuries to come, if the social conditions of the populations improve due to the political improvement of access of these populations to new technologies in the fields of agriculture, health and social sciences, leprosy will have only space in medical museums as a terrifying disease that had threatened human kind for many millennia.


11:30 L’eliminazione della lebbra e delle malattie neglette come problema di sanità pubblica
Dott. Francesco Maraglino

Capo dell’Ufficio per le malattie infettive della Direzione generale di prevenzione sanitaria, Ministero della Salute (Italia)

Leprosy elimination and other neglected diseases as public health threat
Dr Maraglino Francesco Paolo

Leprosy is a chronic infectious disease caused by Mycobacterium leprae, characterized by a long incubation period (about 5 years) and late onset of symptoms, which can appear up to 20 years after infection. If affects peripheral nerves, skin, eyes, mucosa of the upper respiratory tract, and can cause severe disabilities, if not treated at an early stage, with a multi drug therapy.
According to WHO, the number of Leprosy cases is globally decreasing; nevertheless, some pockets of high endemicity remain, with more than 1,000 new cases notified each years.
In Italy, the epidemiological situation deeply changed in the last 30 years, in fact, the new cases are mainly imported cases. Autochthonous cases almost disappeared, varying from 0-3/year in the last 10 years.
Important concurrent factors are chronic malnutrition, poor life conditions, difficulties in accessing health services, and linguistics barriers.
Italian legislation consists of three main measures:

  • Ministerial decree 15 December 1990 on the Information System for infectious diseases;

  • Guidelines for the control of Leprosy in Italy, issued in June 1999; and

  • the coordination act on Leprosy, published in May 2001.

The Guidelines are the referring document for diagnosis, therapy and management of patients and family contacts. In Italy, due to the epidemiological situation, the health controls on contacts at work places and at school are not requested.
The Coordination acts defines the health facilities in charge of leprosy patients and their tasks. In particular, the territorial centers are in charge of implementing the therapeutic protocols and the periodic controls on patients and contacts, while the Reference Centers, in number of four at national level, are in charge of diagnosis confirmation, case notification, and definition of the multi drug therapy for each patient.


15: 00 Dignità e diritto alla tutela della salute delle persone affette da lebbra
Prof.ssa Barbara Frey

Docente all’Università di Minnesota e Membro del Gruppo Internazionale di Lavoro sulla Lebbra e il Progetto sui Diritti Umani (USA)

Summary of Presentation by Barbara Frey, University of Minnesota
Dignity and the Right to Protection of Health of People with Leprosy

In her presentation, Ms. Frey will discuss the findings and recommendations of the International Working Group on Leprosy and Human Rights, which was created by the Nippon Foundation to consider the most effective implementation of the United Nations Principles and Guidelines to eliminate discrimination against persons with leprosy and their families. The International Working Group held five regional consultations between 2012-15, resulting in a report that discussed the roles of the state, civil society including religious institutions and their leaders, and leprosy-affected persons in promoting the rights and dignity of all persons impacted by Hansen’s Disease.
The International Working Group benefitted from consultations with persons affected by leprosy and their mutual support organizations, and from site visits to leprosaria and hospitals for affected communities.  The harsh realities experienced by persons affected by leprosy and their families underscore the need for effective international and domestic action.
The Principles and Guidelines confirm and build upon the core international guarantee of non-discrimination embedded in international law.  As such, States must takes steps in law and practice to eliminate all forms of discrimination against persons affected by leprosy. To assist in this process, the International Working Group prepared a "Suggested Framework for National Plans of Action" for States to use to eliminate stigma and provide support for leprosy-affected communities in their own domestic contexts.
Persons affected by leprosy must be actively involved in all decision-making processes affecting their rights and dignity. Civil society organizations and social institutions, including schools, religious communities and centers of art and culture are also critical partners in helping to remove the misconceptions associated with leprosy and in raising public awareness about the disease and its impacts.  


15:40 Lo stigma sociale e il pregiudizio
Sig. Tatsuya Tanami

Direttore Esecutivo, The Nippon Foundation (Giappone)

Stigma and Prejudice:
The Nippon Foundation’s role in tackling leprosy discrimination
Tatsuya Tanami, The Nippon Foundation

This year marks the 20th anniversary of the abolition of Japan’s Leprosy Prevention Law. This was the law that required leprosy patients to be placed in involuntary isolation in sanatoria.
Lives were destroyed by a diagnosis of leprosy. Patients were separated from their families and communities. The government’s policy, which continued long after segregation has been discredited, helped to entrench stigma and discrimination.
With the law’s abolition, the state apologized to patients and their families for the suffering they had been caused, and offered compensation. But we must not forget that people are still living with the law’s consequences and that society was complicit in allowing an injustice to stand unchallenged for decades.
For the past 40-plus years, starting in 1974, The Nippon Foundation has been striving for the elimination of leprosy. Over the past decade, it has placed increasing emphasis on addressing stigma and discrimination as an essential component of this goal.
Under the leadership of Yohei Sasakawa, The Nippon Foundation has worked with UN bodies and other influential organizations to highlight leprosy as a human rights issue and promote an end to discrimination. The Foundation has also supported the empowerment of people affected by leprosy and provided platforms for their voices to be heard.
There is now a growing movement around the world to preserve the history of leprosy for what we can learn about stigma and discrimination and the struggle to live in dignity as human beings.  
Why do people discriminate against other people? Leprosy teaches us the answer to this universal human problem.


15:55 Lo stigma e il “Toxic Imagery”
Sig. José Ramirez

International Association for Integration, Dignity and Economic Advancement – IDEA (USA)

Stigma and Toxic Imagery
By José Ramirez, Jr.

The combination of historically believing that leprosy is a curse, and inhumane actions, or lack of action, continue to perpetuate fear and generate the fuel to explode stigma across borders, cultures, mountains, oceans and faiths. This makes it possible for stigma to navigate complex social systems.  Hansen’s disease is a toxic bacillus that regrettably also has been transferred to give birth to toxic imagery of persons affected by leprosy.  

There is no standardized definition of stigma, but for me it is an act of labeling, rejection or unexplained fear of a person.  A common thread is religion and terminology found in all cultures to create differences and fear of the unknown.  Knowledge about leprosy is powerful, but ignorance about leprosy is more powerful.  

Many recommendations can be written to lessen and finally extinguish stigma.  Those that are deemed the most important include: kicking down the doors to board rooms, and paid positions, to become a part of the empowerment process and truly foster an era of collaboration; create a standard definition of stigma; spawn creative reforms such as Leadership Stipends for persons affected by leprosy; adopt a statement such as “See the whole person, not the toxic images”; establish one unified World Leprosy Day; and scream out against degrading terminology.


16:40 L’accesso all’educazione, al lavoro e al matrimonio
Prof. Yozo Yokota

Presidente del Centro per la Formazione e l’Educazione sui Diritti Umani (Giappone)

Summary of Presentation at the Vatican Symposium on 9 June 2016
By Yozo Yokota
President of the Center for Human Rights Education and Training
“Access to Education, Work and Marriage”

    In his presentation on the issue of discrimination against persons affected by Hansen’s disease and their family members, Mr. Yozo Yokota will focus on three fundamental social rights, i.e., (a) the right of access to education, (b) right to work, and (c) various rights related to marriage, family and social services.  He will do so because these rights are basic to maintain human dignity, physical integrity, search for spiritual fulfillment an enrichment of one’s life.

    Mr. Yokota will use two important UN human rights instruments as a base for analysis.  One is the Universal Declaration of Human Rights of December 1948 and the other is the Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and Their Family Members of September 2010,  While there are different views regarding the legal nature of these documents, the speaker will take a position, as many international human rights experts today agree, that these instruments have certain legal weight that should be respected by States, entities and individuals.

    After discussing each social right that he takes up, the speaker will conclude that persons affected by Hansen’s disease and their family members have long suffered from discrimination based on misunderstanding about this disease and stigma associated with it.  They have been deprived of all the human rights and fundamental freedoms proclaimed in the Universal Declaration of Human Rights, in particular, the right of access to education, right to work, and the rights related to marriage, family and social services, that are extremely important by themselves but also very fundamental to enjoy other human rights and fundamental freedoms.  He will underline that this situation should be corrected immediately and necessary remedies be provided to the victims at the earliest possible time.


Venerdì 10 giugno 2016

9:00 L'Induismo
Dott. P.K. Gopal

Presidente "Integration, Dignity & Economic Advancement of people affected by leprosy" - IDEA India (India)

A brief summary of Paper by Dr.P.K.Gopal

"Hinduism is the religion of the Hindus which hailed supreme in India. It is the oldest of all  religions. This is not founded by any prophet.  Hindu scriptures are the oldest in the world. The Vedas are the foundational scriptures of Hinduism. Swami Vivekananda was a key figure in introducing Hinduism in  Europe and USA, raising interfaith awareness and making Hinduism a world religion. Hindus believe that all living creatures have a soul.

Two factors common to all traditions are family and religion.   For several centuries the leprosy affected people were  segregated and isolated from the society. There is a belief in divine punishment in all religions and people tend to accept the condition of leprosy affliction as something they deserved.
The theory of Karma is propounded to explain all kinds of suffering. Karma implies that if one has committed misdeeds in previous births, he has to inevitably bear the consequences.  
I am happy that in this Jubilee of Mercy this symposium theme is "TOWARDS HOLISTIC CARE FOR PEOPLE WITH HANSEN’S DISEASE THAT RESPECTS THEIR DIGNITY".  Dignity of people affected by leprosy and their empowerment depends upon the attitude of the society.
In no other disease a person is called in the name of the disease.  Mahathma Gandhi was the first person to advice the world "not to use the word leper".  In 2003 Mr.Sasakawa took the  initiative of approaching  the Office of  UN High Commissioner for Human Rights reporting  leprosy-based discriminations.   The UN Human Rights Council in September 2010 unanimously passed the resolution for elimination of discrimination of persons affected by leprosy and their family members.
If there is no stigma and discriminations the leprosy affected people can live with dignity.


11:00 La sollecitudine della Chiesa in India per le Persone affette da Lebbra Dott. Arputham Arulsamy

Direttore Aggiunto della “Catholic Health Association of India” (India)

Rev. Dr. Arputham Arulsamy

This deliberation discusses the current status of leprosy, deemed to be eliminated in India. The review of the current challenges surfaces the necessity of the continued measures to prevent and control the disease along with the provision of care and support to the patients and their families. Further, it dwells on the Indian Catholic Church’s role in these efforts, especially the Catholic Health Association of India (CHAI) – one of her main healthcare organs of the Bishops Conference of the country. This concludes by describing a Way Forward for the Catholic Church in the whole endeavour.


12:00 Padre Giorgio Abram, ofm Conv

Sacerdote, medico e missionario (Italia)

During his forty years of experience, Fr. George Abram has been able to follow an anti-leprosy programme almost from the beginning, when the estimated patients on register were 50,000, mostly isolated in hospitals and camps, with poor assistance and limited access to treatment.
Thanks to the great commitment by all people involved, the capillary case-finding, the training of medical personnel at grass-root level, the health education campaigns, the domiciliary treatment and, starting from 1983, the widespread use of the new multi-drug treatment, Ghana’s anti-leprosy programme was the first one in sub-Saharan Africa to reach the WHO target for the elimination of leprosy as public health threat.
In 2015, the new cases reported were only 302 (on a total population of 23 million), while 344 patients were discharged as cured. On 1 January 2016 the patients on register numbered 365.
A few stories among the many Fr. George experienced and gathered from his patients are presented here, outlined with great simplicity, as if they all were normal happenings of daily life. The accounts are brief and the actors are anonymous sufferers, who all fought against the disease and were successful. Or nearly all of them.



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