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WHO GOODWILL AMBASSADOR’S NEWSLETTER April 2004 • Number 7

• Leprosy is curable

• Free treatment is available

• Social discrimination has no placeOF

EliminationLeprosy

FOR THE

A MESSAGE FROM THE GOODWILL AMBASSADOR

The Need to CommunicateCONTENTS

Message 1

Report from IndiaRaipur delegates urgedto seize the moment. 2

OpinionDr. S.D. Gokhale makesthe case for advocacyand empowerment. 4

Human StoriesBirke Nigatu onovercoming leprosy 5

PartnersLEPRA 5

Ambassador’s JournalA return visit to Indiafor a key conference on elimination 6

NewsWestern Pacific 8

From the Editors 8

India’s president, Dr. A.P.J. Abdul Kalam (center) flanked by Chhattisgarh state’s chief minister, Dr. Raman Singh (left) and governor, Lt. Gen. K.M. Seth (right) at the opening of the National Conference on Elimination of Leprosy in Raipur.

As the deadline for elimination approaches, it isapparent that three simple messages have still toreach everyone: leprosy is curable, treatment is free,social discrimination has no place. This knowledgeis essential to encourage self-reporting, which has akey role to play in bringing to light new cases as thepush for elimination accelerates; it is also vital tobreaking down the stigma still associated with thedisease, especially in a country such as India.

Why aren’t these simple messages betterknown? We can blame ignorance, prejudice, thepresence of the disfigured still among us. We canalso, if we choose, blame the media.

I know from personal experience as WHOAmbassador that the media’s grasp of leprosy issuesis not what those of us working to eliminate thedisease would hope. On the other hand, it is aquestion of priorities. There are many morepressing public health issues in the world today;leprosy is not at the top of the list, even in endemicnations. By extension, it is not at the top of thenewsroom agenda, either. After all, leprosy hasbeen around since the dawn of recorded time. It isnot a new disease, and “new” is short for “news.”

But that is no excuse for ignoring leprosy, orworse, peddling old prejudices or misrepresentingthe facts when it is taken up as an issue.

The fact is, there is a story to tell, and a verygood story: leprosy elimination is one of the greatsuccesses in the health field globally. Some 12.5million people have been cured, 10 million in Indiaalone. But the other “good” story is that a diseasedating back to biblical times has yet to beeliminated, even though a cure exists. Why not?

For this to happen, we need political leaders tomaintain their commitment, we need the public tobe aware of the symptoms and the cure, we needsocial awareness that there is nothing to fear fromthe disease. In short, we need the media.

But rather than expecting the media to be ouradvocate, we have to make our case to the media. I feel the leprosy community should be doing muchmore in this respect. If there are times when themedia neglects leprosy, or gets the story wrong, weshouldn’t blame the media but regard it as ourfailure and ask what we could be doing better.

— Yohei Sasakawa, WHO Goodwill Ambassador

With less than two years to go before the WHOtarget date for the elimination of leprosy as a publichealth problem, the National Conference on theElimination of Leprosy held recently in India wasparticularly timely.

India accounts for two-thirds of the world’sleprosy cases (and nine-tenths of South East Asia’s),so the January 27-30 conference in Raipur, thecapital of Chhasttishgarh, focused attention on thecountry where the most work remains to be done.

India has made great strides in recent years toreduce the burden of the disease through thewidespread application of multidrug therapy(MDT), and the conference dulynoted this impressive progress.But it also sounded a warningabout “a general tendency towardcomplacency as a result of initialsuccesses” and urged allconcerned to redouble theirefforts to achieve the eliminationgoal by the end of 2005.

The conference served toremind that India is a big country— too big to talk meaningfully ofnational averages — andhighlighted the differences thatexist from state to state, anddistrict to district, where highlyendemic pockets can exist. Inparticular, it expressed concern over a number ofstates, especially Bihar, Jharkhand, Orissa, UttarPradesh, West Bengal and the host state ofChhattisgarh, with regard to prevalence rates andcase detection levels.

It also identified specific population groupswhere sustained efforts will have to be made toensure that cases are uncovered and treated intimely fashion, namely tribal populations, borderpopulations, and urban slum populations, whichare either difficult to reach or difficult to keeptrack of — or both.

The contribution made by MDT in controllingleprosy was reviewed in “MDT and Managementof Leprosy in the Field,” with speaker Dr. Raja Rao,LEPRA India, stressing that its effectiveness wasbased on punctuality of treatment, regularity oftreatment and completion of treatment.“Elimination is within our reach. We have neverbeen as close as we are today,” he told delegates.“This success is our success: the success of workersin the field.” But he added that there was still a longway to go before “every patient in every village”was reached, and that further efforts were vital.

To this end, the conference urged that IEC(Information, Education and Communication)campaigns about symptoms and the availability ofa free cure be strengthened to encourage self-reporting, and that the integration of leprosy withinthe general health services be accelerated so thatmore people can be reached.

Operational factors came under particularscrutiny, with a number of problems highlighted,among them delayed diagnosis, over diagnosis, re-registration of cases and inadequate training ofgeneral health services workers. Dr. Derek Lobo,WHO/SEARO, drew attention to the phenomenon

of “survival case detection,” or uncovering newcases — whether genuine or not — as a way forleprosy workers to justify their existence. “We areextremely good at reaching the reached — again,and again, and again, he said.”

Conference chairman Dr. S.K. Noordeen,Leprosy Elimination Alliance, alluded to this sameissue when he reminded delegates that the futurewas about “the sustainability of leprosy treatment”not “the sustainability of leprosy workers.”

Outlining a vision beyond 2005, Dr. Noodeensaid services to every leprosy patient must besustained, leprosy’s continued decline must bemonitored, those with disabilities must continue tobe rehabilitated, and there must be completeacceptance of leprosy-affected persons within thecommunity. The goal in all cases was integrationwithin the general health services, he added.

Dr. Abraham Joseph, Schieffelin LeprosyResearch & Training Centre, meanwhile, paintedsome possible scenarios from a public healthperspective: will we see a further decline inincidence and prevalence, leading to totaleradication; are we going to see a static state of

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FTEL Apr 04 • No. 7REPORT FROM INDIA

Raipur Conference Issues Rallying CryAs Deadline for Elimination Approaches

LEPROSY LEXICON� Elimination Elimination in the leprosycontext refers to the “elim-ination of leprosy as apublic health problem,”which the World HealthOrganization defines asless than one case per10,000 population. It isdifferent from eradication,which is the permanentreduction to zero of inci-dence of infection.

The well-attended confer-ence came at a criticaljuncture in India’s fightagainst leprosy.

‘We’ve never had a better opportunity. Let’s not waste it’ was the clear message toemerge from a major conference in India that gave fresh impetus to elimination.

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incidence and prevalence if complacency creeps in;or even worse, will there be an initial declinefollowed by a subsequent increase, as has been thecase with malaria? Let us learn the lessons fromother eradication and elimination programs, he said.

A much applauded initiative on the sidelines ofthe conference was a workshop on the role of themedia. Leprosy has not always been written up inthe way the leprosy community would like, andhas been a subject “enveloped in mystery, prejudice,misconception and stigma,” in the words of Dr.S.D. Gokhale, International Leprosy Union, whochaired the session.

As an example, a member of the audiencecited an item in a Tamil daily that sensationalizedthe fact a restaurant was found to be employingthree people affected by leprosy, leading to apublic outcry and closure of the restaurant.

But despite this uneasy relationship with themedia, participants recognized that in order toachieve the goal of elimination, the media has avital role to play by keeping the topic in front ofpolitical leaders, raising awareness of the symptomsof leprosy, reinforcing the message that leprosy canbe cured, and reducing stigma.

“We need to reframe the agenda of eliminationto include rehabilitation and the role of themedia,” said Dr. Gokhale. “Media action has to bestrengthened.”

After elimination, rehabilitation was a key wordat the conference, or “rehabilitation withcompassion” in the words of India’s president, Dr.A.P.J. Abdul Kalam.

Dr. Kalam spoke at the opening ceremony ofthe need to make treated leprosy patients feel ableto function normally in society, and to find a wayfor them to be rehabilitated with their families.“Each of us must ask, ‘What can I do to eliminateleprosy?’ We all of us have an important mission,and if we all join together, we can achieve it,” thepresident said. “The ignited mind is very powerful.”

The issue of discrimination was a recurringtheme at the conference, with responses to leprosypatients said to range from total acceptance to totalrejection. Although much work still needs to bedone to reduce prejudice (and particularly amongthe better educated members of society, it seems),there was a sense that incidence of discrimination islessening, as awareness improves and theproportion of patients with deformities declines. Asa poster presentation concerning leprosy activitiesin Udupi, in the state of Karnataka, reported,“People are aware that leprosy is a curable diseaseand there are drugs available free of cost and thetreatment is for short duration...The social stigmaattached to the disease is being fully removed fromthe minds of the people.”

Various leprosy-related organizations had standsat the conference, including The Leprosy MissionTrust India, MESH (Maximizing Employment toServe the Handicapped), and IDEA India. Amongthe IDEA delegates were more than 30 people fromleprosy colonies, for whom the conferenceprovided a confidence-building opportunity “totravel for the first time out of their states, stay athotels, and interact as equals with other participantsin the conference from all over India,” said IDEAIndia President Dr. P.K. Gopal.

If delegates were left with one message, it wasto seize the opportunity India has to eliminateleprosy while a cure exists, free treatment isavailable and national commitment is there. In acountry facing other more serious health problems,it’s an opportunity that may not last forever.

RAIPUR PLEDGEOn this Martyr’s Day, with what I have learned, I consider it my privilege to solemnly pledge to renew mycommitment and strength to wage a renewed war againstleprosy to ensure our national goal of the elimination ofleprosy is reached everywhere, and to touch people withcare and compassion to dispel the social evils of leprosy, to build the capacities of those affected by leprosy, and tointegrate them into the mainstream of society. (Read out by Dr. Noorden, Conference Chairman,on January 30, 2004, the 56th anniversary ofMahatma Gandhi’s assassination) �

FTEL Apr 04 • No. 7

Elimination is within ourreach. We have never beenas close as we are today.

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FTEL Apr 04 • No. 7OPINION

Advocacy and Empowerment: PuttingA Human Face on Leprosy Elimination

When people in India discuss the role of media inthe campaign to eliminate leprosy, they highlightthe need for advocacy.

But in discussing advocacy, we need to be clearabout what we mean; otherwise, our efforts will bechanneled into traditional pursuits such asbrochures and posters that fail to achieve our goal.

Advocacy is a process of communication andpersuasion in support of a cause; a well-thoughtout, professional strategy to influence change.

Where elimination is concerned, the goal ofadvocacy should be to bring about a change inmindsets — of governments, agencies, NGOs, theleprosy-affected and society at large.

The public need to be told that leprosy is adisease like any other, that it can be cured, and thatthere is no reason to shun those affected byleprosy. Those of us working to eliminate leprosyneed to be reminded it has a human face. And theleprosy-affected need to be empowered.

It seems to me that through a massiveelimination campaign based on the distribution ofMDT to achieve WHO and government targets, wehave lost sight of the individual leprosy sufferer andhis dignity as a human being.

Because of the system of free delivery of drugs,free housing, and free clothing we have madeleprosy patients chronically dependent upon eitherthe state or on the hospitals that are supported byvoluntary donations, mostly from abroad.

If a person becomes a parasite, how can weexpect him to be self-confident and be accepted innormal society? In the process of receiving freedelivery of services, leprosy patients have lost notonly their dignity, they have lost their souls.

This donor-recipient approach has de-humanized leprosy work. Because its focus is onstatistical targets, leprosy workers concentrateentirely on numbers and not on individual sufferersor their rehabilitation. Joseph Stalin said: “Thedeath of one man is a tragedy. The death ofmillions is a statistic.” Are we going to de-humanize leprosy by only talking about statistics?

My experience of working with WHO missionsin Nepal, the Philippines and Bangladesh, and of

work in China and Korea as ILU chairperson, tellsme of the need to reorganize our approach.

In this, the media has an important role to play,as the recent advocacy workshop in Raipur madeclear. I include some of the suggestions put forwardthere in the following list of prerequisites of asuccessful elimination campaign.

1. Empower cured persons and involve them incommunicating to the community that leprosyis curable and treatment is free, and make useof them in media campaigns.

2. Create a resource center where photographs,human-interest stories and basic news items areavailable to any media organization in India, inorder to get the media more interested andinvolved in the elimination campaign.

3. Develop a district-specific media strategy,including organizing field trips for journaliststo see the situation at first hand.

4. Include former patients when planning anypolicy or strategy. Ultimately they are themasters of their own destiny. Our job is tohelp them help themselves.

5. Involve all NGOs and community-basedorganizations in leprosy work. Until now, ithas been the monopoly of leprosy agencies orat most NGOs working in the health area.

6. Employ more women to deal with femaleleprosy cases, in order to give a human face toleprosy. There is also a need to recognizepeople who have been totally rehabilitatedwith an award of some kind — and also thededicated workers who made this possible.

7. Place more emphasis on reconstructive surgery,rehabilitation and issues regarding children andwomen living in the shadow of leprosy. All ourclaims about elimination are not going to betrustworthy as long as people see disabled anddisfigured persons around them, and womenand children who are stigmatized.

8. Have leprosy-disabled persons join themovement of all disabled persons to see thatthe Persons with Disability Act, whichcontains provisions for prosthetic appliances,seed money for vocational rehabilitation andother initiatives, is effectively implemented. �

AUTHOR:Dr. S.D. Gokhale

Dr. S.D. Gokhale ischairperson of theInternational LeprosyUnion, a non-governmental developmentorganization that supportsthe cause of leprosyelimination leading to totaleradication and solicitssupport by building politicalwill and awareness in theprint and electronic media.

In the drive to eliminate leprosy, have we focused unduly on statistics, and neglected the individuals we are trying to help?

Include former patients whenplanning any policy or strategy.Ultimately they are the mastersof their own destiny.

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Learning a Skill Restored My Dignity

I developed leprosy when I was only six yearsold. At that time, I was living with mygrandmother as my parents had divorced. Whenthe symptoms of leprosy first appeared on myface, my relatives took me to a traditional healer,health centers and hospitals; they even triedwitchcraft, but all to no avail. Surprisingly, neitherthe health centers nor the hospitals identified thedisease. But the last hospital I visited referred meto an Alert Hospital (which specializes in leprosy)and I went there with my mother.

When the doctor said I was affected by thedisease, my mother cried and said it was a

curse. Afraid of the stigma, she warned menot to return to the hospital again. By thistime, she had started a new life, and didnot want to go through another divorce.

But she didn’t realize the impact of herdecision on my life. I spent four years

without receiving treatment, simply becauseI didn’t have access to it. Gradually, my

fingers became clawed. When Ishowed my mother, she just told

me to rub them, saying wehad no history of such athing in our family.

By now I decided to seek treatment bymyself. I borrowed the bus fare and went backto the Alert Hospital, where the doctor told meI should be admitted.

Thanks to the treatment I received, I wascured, although I was left with small disability inmy fingers and toes. Rather than return home,where my presence would have humiliated mymother, I decided to lead my own life. Not onlyhad leprosy left me disabled, it had also isolatedme from my parents and relatives. Increasingly, I cut myself off from people.

But then I learned how to embroider usingmy disabled fingers, and this skill is whatrestored my dignity. I said to myself that withGod the Almighty, nothing is impossible. TodayI am married with four daughters, and lead acontented life as a person without leprosy. I even became a pioneer for many peopleaffected by leprosy, encouraging them to walkaway from begging and take up embroidery.

For me, leprosy is like any other disease. It iscurable. Besides, disability is not an inevitableconsequence of leprosy. Even those of us withdisabilities can participate in productiveactivities according to our ability.

I believe that the disabled should not bedependents; they should not be beggars. I acknowledge, though, that the disabled,especially those disabled by leprosy, face manyproblems that sometimes seem overwhelming.In that situation, integrated effort is called for,and we must do all we can to help them. �

FTEL Apr 04 • No. 7 HUMAN STORIES

PARTNERS

Leprosy is like any other disease.

It is curable.

AUTHOR:Birke NigatuBirke Nigatu is chair ofthe Ethiopian NationalAssociation of Ex-LeprosyPatients, an organizationestablished to help formerpatients, advocate ontheir behalf and raiseawareness of leprosy issues.

LEPRA, the U.K.-based medicaldevelopment charity, is celebrating its80th anniversary this year. Founded asthe British Empire Leprosy ReliefAssociation on 31 January 1924,LEPRA works actively in a number ofcountries to restore health, hope and

dignity to people affected by leprosy.From the outset, LEPRA operated

as a medical organization to spearheadoutpatient work and foster researchinto all aspects of the disease.

It pioneered the use ofchaulmoogra oil in treatment ofleprosy in its early years, and wasrecognized as the first “leprosyprevention organization” in 1931.

Later it conducted field researchinto the use of Dapsone as a moreeffective treatment for leprosy and in1974 became one of first associationsto introduce multidrug therapy (MDT)at field level following drug trials thatshowed MDT resulted in a total cure.

As well as providing medicaltreatment, an important aspect ofLEPRA’s work is education to combatthe social stigma often experienced bythose with the disease. It also provideseconomic and social rehabilitationprograms, including teaching peopleaffected by leprosy new work skillsand providing loans to help them starttheir own businesses.

While LEPRA’s main objectiveremains the eradication of leprosy, itwill increasingly draw on itsexperience of leprosy work to tackleother diseases such as tuberculosis,HIV/AIDS and malaria in order tobenefit entire communities.

Her situation got worse before it became better, but in the end, as Birke Nigatu relates, her story has a happy ending.

LEPRA MARKS 80TH ANNIVERSARY

RAIPURMy first trip of 2004 was to India, where Iattended the National Conference on theElimination of Leprosy from January 27 to 30.Held in Raipur, state capital of Chhattisgarh, itwas sponsored by the International LeprosyAssociation, the Indian government, thegovernment of Chhattisgarh and major partners inthe fight against leprosy.

Speaking at the opening ceremony, India’spresident, Dr. A.P.J. Abdul Kalam, said thatconcerted action would be necessary to achieveelimination by the end of 2005, and demonstratedhis clear commitment to this goal. He also stressedthe importance of rehabilitating people affected byleprosy, using the term “rehabilitation withcompassion.” An essential part of this process, hesaid, would be to promote health education toraise awareness of leprosy and eliminate thestigma associated with the disease. Dr. Kalam leftdelegates with the thought, “Let my brain removethe pain of the suffering community.” With thispowerful endorsement from the nation’s topleader, I have strong hopes that elimination

activities in India will make rapid progress. In my own remarks at the opening ceremony,

I said that on a journey of 100 miles, after 99miles we are only half way. This year and 2005represent the last mile of our journey toachieve elimination. We must proceed with asense of urgency if we are to complete thisjourney successfully.

During the conference I had an opportunity tomeet with two senior representatives of India’sMinistry of Health and Family Welfare: Mrs. RitaTeaotia, joint secretary, and Dr. G.P.S. Dhillon, thenewly appointed deputy director general (leprosy)for General Health Services. I asked them for evenmore effort from the Indian government, and theytold me that a focused action plan for eliminationactivities in the years 2004 and 2005 was currentlybeing finalized and would be announced veryshortly. With India preparing for a general electionin April, I imagine there will be some politicalchanges, but I am hoping these won’t disrupt thefinal push for elimination.

I also gave a keynote address offering mythoughts on the situation in India based on several

Return to India

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AMBASSADOR’S JOURNAL FTEL Apr 04 • No. 7

If the goal of leprosy elimination is to be achieved, then what happens in 2004 willbe crucial. Yohei Sasakawa returned to the country with the biggest caseload toattend a key conference designed to accelerate momentum toward this goal. He considers it very significant that it was inaugurated by the president of India.

Ambassador Sasakawa walks at the head of an elimination parade passing through the center of Raipur,accompanied by State Health Minister Bandhi at left.

Mrs. Rita Teaotia

Dr. Krishnamurthy Bandhi

Dr. Raman Singh

Dr. G.P.S. Dhillon

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Multipurpose healthworkers respond to aquiz about leprosy elimi-nation (right); children atan elimination rally

visits I had made in the past year. Firstly, I reported on my meetings with the

political leaders of several Indian states and thevarious activities initiated as a result of securingtheir commitment to elimination.

Secondly, I talked about my encounters withthe media in the places I visited, whichconfirmed my impression that journalists stillhave a poor grasp of leprosy elimination. Howto build a relationship with the media was oneof the themes taken up by this conference at aworkshop chaired by Dr. S.D. Gokhale,chairman of the International Leprosy Union. Formy part, I suggested that we need to come upwith a strategy that interests the media in whatwe are doing and results in active coverage ofelimination activities.

Thirdly, I talked about the need for a socialmovement to enhance leprosy elimination, whichI called “broadening the scope of integration:reaching out beyond the leprosy community.” Solong as responsibility for tackling leprosy remainsin the hands of specialist government agencies,medical institutions and NGOs in a vertical setup,this won’t be possible. We need to involvedifferent bodies in the non-leprosy community ifwe want society to gain a proper awareness.

I also had the opportunity for discussions withChhattisgarh’s chief minister, Dr. Raman Singh,and the state health minister, Dr. KrishnamurthyBandhi. Chhattisgarh has the third highestprevalence rate among India’s states at 5.08 casesper 10,000 population. In common with otherstates, Chhattisgarh has a significant tribalpopulation (over 34%), and faces a number ofchallenges in tackling leprosy, including largenumbers of people living in remote areas, poorlevels of hygiene and nutrition because ofwidespread poverty, and a high level of socialdiscrimination. Consequently, much effort needs

to be put into case discovery and treatment,awareness-building and rehabilitation. But bothChief Minister Singh and Health Minister Bandhifully understand the issues and showed me theyare on top of the situation.

On January 29, I visited a primary healthcenter in a village about 30 kilometers fromRaipur, where I met about 20 multipurpose healthworkers who deal with a wide range of healthissues, including maternity care, child care andtuberculosis prevention, not just leprosy.

I was told that these health workers are eachresponsible for about 5,000 people and do theirrounds by motorcycle or bicycle. Many of thehomes they visit are far apart, and some can onlybe reached on foot. When I heard this, I felt quitehumble and grateful to them for their dedication.

On this occasion, they had gathered to preparefor a Modified Leprosy Elimination Campaign thatwas due to begin the next day. I was impressed bytheir knowledge of leprosy, their grasp of theleprosy situation in Chhattisgarh, and theirdetermination to see the prevalence rate reducedto less than one case in 10,000 by the end of 2005.

A number of them related their experiences ofelimination activities, and one account in particularstays with me. It concerned a member of theBrahmin caste, occupying a high position in thecommunity, who discovered he had leprosy. Hisfingers began to twist out of shape, but he wascured thanks to MDT, and expressed his heartfeltgratitude to health workers. The moral of thestory is that even in a hierarchical society such asIndia’s, disease does not discriminate — andneither does the cure.

January 30 is Martyr’s Day in India, markingthe anniversary of the assassination of MahatmaGandhi. That morning, several thousandchildren gathered in a square in Raipur to rallyfor leprosy elimination. I marched alongside thestate health minister at the head of a longprocession of political leaders, governmentworkers and boys and girls as it passed throughthe center of the city, where the marchershanded out pamphlets promoting elimination.While I am confident that these children willgrow up to know a world without leprosy, I amkeenly aware that we must work even harder ifthat is to happen. �

Even in a hierarchical societysuch as India’s, disease doesnot discriminate — andneither does the cure.

FTEL Apr 04 • No. 7

LEPROSY FACTS� India’s prevalence

rate has gone downfrom 57.6 per 10,000people in 1981 to 3.2per 10,000 in March2003

Ambassador Receives UpdateOn Situation in Western Pacific

On November 5, 2003, Ambassador YoheiSasakawa met Dr. Shigeru Omi, Regional Director,WHO-Western Pacific Regional Office.

Dr. Omi stated that the goal ofleprosy elimination (a prevalence rateof less than one case per 10,000population) had been achieved at theregional level in the year 1991. At thenational level, 35 of the 37 countriesand areas had achieved the goal by theend of 2000 covering more than99.9% of the regional population.However, he added that the prevalencerate remains higher than theelimination goal in the Federated Statesof Micronesia and the Marshall Islands.

In these Pacific island countries and areas,WHO has supported nationwide leprosyawareness campaigns involving the mass media,

ministries of education and other relevantagencies. Similar campaigns have also beenconducted in highly endemic pockets in a

number of the large countries thathave already reached elimination atthe national level.

Nevertheless, the region as a wholehas entered the post-elimination phaseand is in the process of developmentof regional post-elimination strategiesthat will be introduced during a bi-regional meeting with the South EastAsia Region in the fourth quarter of2004 to share the experiences of thecountries that have reachedelimination.

Dr. Omi said WHO greatly appreciated therecent visit of Mr. Sasakawa to Papua NewGuinea and the Philippines. �

The region as a whole has entered the post-elimination stage, but Micronesia and the Marshall Islands have yet to reach the elimination goal.

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FOR THEELIMINATION OF

LEPROSYPublisher

Yohei SasakawaExecutive Editor

Tatsuya TanamiEditor

Jonathan Lloyd-OwenAssociate Editors

Akiko Nozawa, James Huffman

LayoutEiko Nishida

PhotographerNatsuko Tominaga

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With support from:Sasakawa MemorialHealth Foundation,

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©2004 The Nippon Foundation. All rights reserved by the foundation. This document may, however, be freely reviewed, abstracted, reproduced or translated, in part or in whole,but not for sale or for use in conjunction with commercial purposes. The responsibility for facts and opinions in this publication rests exclusively with the editors and contributors, and their interpretations do not necessarily reflect the views or policy of the Goodwill Ambassador’s Office.

In his speech to open India’s nationalconference on leprosy elimination, Dr. A.P.J.Abdul Kalam (pictured on our cover) spoke ofthe importance of rehabilitating cured patientswith their families.

As one of the delegates who listened to thespeech said afterward, India’s president went tothe heart of the matter: if your family won’taccept you, then nothing else matters.

Sometimes a family shuns one of its own forpurely economic reasons. For a household livingon the poverty line, accepting back a familymember affected by leprosy means anothermouth to feed. If that person cannot contributeto the family’s income — through disability orlack of employment opportunities — then he orshe becomes a burden.

But often the reason is something far moreinsidious — social stigma. As Birke Nigaturecounts in her moving story on page five,though cured of leprosy she felt unable to returnhome because of the “humiliation” it wouldhave brought upon her mother. Fortunately,Birke’s story has a happy end, as she learned askill, regained her self-esteem and has proved an

inspiration to others. Helping those affected by leprosy to help

themselves is a message included by Dr.Gokhale in his thought-provoking piece on pagefour. If rejecting a family member affected byleprosy is heartless, making a leprosy patientchronically dependent upon the state or onhospitals is equally heartless — it turns him intoa “parasite” and erodes his dignity. “How canwe expect him to be self-confident and beaccepted in normal society?” Dr. Gokhale asks.

It seems we need to remind ourselves thatthose affected by leprosy are fellow members ofthe human race and deserve to be treated withcompassion: “rehabilitation with compassion,”in the president’s well-chosen words.

With this issue, our newsletter enters its secondyear of publication, and takes on a new look.We hope it will become even more of a forumfor two-way communication — a place to raiseissues, identify injustices, encourage progressand point the way to a world without leprosyand its associated discrimination. We lookforward to your comments and contributions.

COMPASSION IS KEY

FTEL Apr 04 • No. 7 NEWS

FROM THE EDITORS

Dr. Shigeru Omi