Motorcycle MaintenanceForty years have passed since the death of therevolutionary, Che Guevara. As a young medicalstudent, he set off on a motorcycle journeyacross South America together with a friendwho was a biochemist. Passing through Peru,they spent time at a leprosy colony, where theyvolunteered their services as doctors.

Many people became familiar with this storyafter it was made into a popular film, The MotorcycleDiaries. Doubtless quite a few movie-goers wereseeing leprosy depicted for the first time.

As some of you may know, I use the exampleof a motorcycle when I describe progress in thefight against leprosy. In my analogy, the medicalaspect of the disease is represented by the frontwheel and the social aspect by the rear wheel.To ensure a smooth journey, both wheels mustrotate at the same rate and be the same size.Balance is important.

Concerning the medical aspect, the frontwheel has been gathering speed in recent years.Leprosy has been all but eliminated as a publichealth problem in countries around the world. In

1985, the disease was endemic in 122 nations;today this remains the case in only four.

However, those of us involved in this workhave neglected the back wheel. People affectedby leprosy still face serious issues with regard tostigma and discrimination. For my own part, itwas only a few years ago that I fully came toappreciate the scale of the problem, and began tofocus more attention on it.

In other words, though the front wheel hasbeen spinning in the right direction, the backwheel has been holding up progress. Themotorcycle needs some fine-tuning.

I am now doing my best to see thatinitiatives to tackle the social consequences ofthe disease are brought up to speed with themedical efforts, because they are equallyimportant components of a complete cure. Notuntil we have adjusted the back wheel will themotorcycle accelerate past the point whereeveryone is truly free of the disease.

— Yohei Sasakawa, WHO Goodwill Ambassador

Message 1

ColumnNew foundation getsunder way in India 2

ProfileProf. Dr. Turkan Saylan, renowned leprologist and social activist 3

Ambassador’s JournalTravels to India, Nepal,Turkey, Azerbaijan, DRCongo, Tanzania 4

NewsLeprosy in Thailand;empowermentworkshop in India;monitoring andevaluation in post-elimination era 8

From the Editors 8

1

WHO GOODWILL AMBASSADOR’S NEWSLETTER December 2007 • Number 29

• Leprosy is curable

• Free treatment is available

• Social discrimination has no placeOF

EliminationLeprosy

FOR THE

Pygmies from Wamba district in the DR Congo’s Oriental Province. Prevalence of leprosy is quite high among Pygmy communities (see page 6).

MESSAGE CONTENTS

2

FTEL Dec 07 • No. 29COLUMN

The Sasakawa-India Leprosy Foundation (SILF)*,an initiative of Yohei Sasakawa with generousfinancial support from The Nippon Foundation,was launched in October 2007 with events inNew Delhi and Mumbai. Among the guests ofhonor were former President of India Dr. A.P.J.Abdul Kalam and Union Finance Minister P.Chidambaram. The new foundation alsoreceived encouragement from leading Indianindustrialists including Jamshyd Godrej, MukeshAmbani and Keshub Mahindra.

We are now identifying projects to takeforward our mission, which is to eradicate thestigma against leprosy by making sure thatpeople affected by the disease are empoweredto live in dignity and are accepted by society.

Empowerment is the first priority. It is clearthat education will need special attention. SILFwill focus on ensuring that all children fromfamilies affected by leprosy have access toeducation, through scholarships and financialassistance where necessary.

We will try to make sure that, as far aspossible, this access is achieved in an integrativemanner by encouraging regular schools toaccept children who come from leprosy-affectedhouseholds. Several leprosy colonies run theirown schools. These need to be upgraded toprovide good quality and inexpensiveeducation, and encouraged to open their doorsto children outside the colonies. The fact thatthere are instances where schools run by aleprosy colony also welcome children from thesurrounding community is a source of greatencouragement. SILF will work towardreplicating this model.

While facilitating pursuit of higher educationthrough scholarships and loans, we will alsowork to provide opportunities for training andskills development. SILF wants to ensure thatskills generation does not take place in a

vacuum but is linked to the changingemployment requirements of a growingeconomy. We would also like to tie up withseveral organizations that are providingvocational training to migrant rural youth indeprived areas.

SILF hopes that employers can be persuadednot to discriminate against people who comefrom leprosy-affected families if they havemarketable skills. However, while encouragingemployment in the formal sector of theeconomy, we are acutely aware that this willnot be a universal option. Hence we will worktoward training and facilitating people for self-employment.

MICRO CREDITAccess to initial capital is often the debilitatingfactor that prevents highly marginalized andexcluded communities from starting their ownbusinesses. Micro credit can provide thesolution, yet for a start-up to be successful andself sustaining requires prior education alongwith identification of feasible business optionsand training in running the business.

SILF will ensure that people affected byleprosy not only have access to start-up capitalbut are also equipped to manage theirbusinesses in a sustainable and self-reliantmanner. We plan to work together to create andassist self-help groups and cooperatives, and thefact that such organizations already exist makesthis task easier.

We also propose to work with NGOs thathave experience and expertise in the aboveareas. While many work with marginalizedcommunities, their activities do not extend toself-settled leprosy colonies. SILF has alreadyinitiated contacts to apprise them of theprevailing socioeconomic conditions. We arealso exploring possibilities for buildingpartnerships with NGOs and CSR divisions ofcorporate houses.

Every project SILF undertakes will aim tosensitize the wider public to the reality ofleprosy. We believe that in changing attitudes andmindsets through widespread awareness of themedical facts — that the disease is difficult tocontract, not hereditary and completely curable— the efforts of each and every individual can goa long way. Hence we want to enlist the supportand goodwill of different sections of the socialspectrum, from politicians and business people toschool children and housewives, in what wehope will create a ripple effect that will spreadacross the country. ■

SILF Sets Out Its Stall New foundation to be a force for empowerment and elimination of stigma

Former President Dr. A.P.J. Kalam with Sasakawa

AUTHOR:Dr. Vineeta Shanker

Dr. Vineeta Shanker isexecutive director of theSasakawa-India LeprosyFoundation.

Reference

* www.silf.in

3

FTEL Dec 07 • No. 29 PROFILE

The neatly dressed young woman standing nearProf. Dr. Turkan Saylan could be a researchassistant. In fact, she is a bodyguard provided bythe Turkish government, who accompanies 72-year-old Dr. Saylan wherever she goes.

Why her country’s leading leprologist, nowretired and battling cancer, should require a minderis explained by her role as founder and president ofone of Turkey’s most progressive NGOs, dedicatedto keeping the country secular and providing equaleducational opportunities for all.

Dr. Saylan first encountered leprosy as amedical student. “It was like the Middle Ages,” sherecalls. “Doctors didn’t treat patients as humanbeings.”

Shocked, she vowed to make a difference. First,though, she had to complete her studies, a processinterrupted by marriage, the birth of two children,and two bouts of TB. The second attack kept herflat on her face for more than a year.

Once qualified, Dr. Saylan specialized invenereology and dermatology, “to show up allthose who shunned the field.” Early in her career,she worked in an insurance hospital, where shewas exasperated by her colleagues’ discriminatoryattitudes toward patients with leprosy.

After she was featured in a TV documentaryabout leprosy, politicians accused her of talkingabout a disease that “didn’t exist” in Turkey. But ata meeting with the health minister, she persuadedhim to let her coordinate the leprosy controlprogram, saying she could do a much better job.

As director of the Istanbul Leprosy Hospitalfrom 1981 to 2002, Dr. Saylan was ahead of hertime in appreciating that it wasn’t enough just totreat the disease with drugs; it was also necessaryto address patients’ social and economic needs.Through a group of volunteers, she raised funds toprovide scholarships for patients’ children and startincome-generating projects.

‘KEMALIST FEMINIST’ Dr. Saylan describes herself as a“Kemalist feminist” — a reference toMustafa Kemal Ataturk, the founder ofmodern Turkey, who based the nationon secular principles. As a womanwhose career had benefited fromAtaturk’s policies, Dr. Saylan and like-minded individuals formed theAssociation in Support of ContemporaryLiving (CYDD) in 1989 to safeguard anddevelop his legacy.

CYDD builds schools and studentdormitories, supports the education ofgirls who would otherwise have noschooling beyond primary level, and

provides scholarships to bright students from poorfamilies to see them through university.

In particular, it focuses on addressing the lack ofeducational opportunities in the poor southeasternparts of the country, where boys continue studyingbut girls marry young and have large families,perpetuating the poverty in which many live.

Since most of Turkey’s leprosy cases originatedin these areas, Dr. Saylan was already very familiarwith the region and its problems. In furthering thework of CYDD, therefore, she was able to makeuse of her knowledge and contacts. “Leprosy was avery good calling card,” she said.

CYDD now has 95 branches around Turkey. Todate, it has helped 25,000 girls go on to secondaryeducation, and provided scholarships to 20,000university students. Its aim is to build a dormitoryin each of Turkey’s 850 districts.

To her more extreme opponents, Dr. Saylan is amissionary in disguise. On the basis that hermother was Swiss, they accuse her of recruitinggirls to convert to Christianity, a charge shedismisses as absurd. She receives frequent threats,but shrugs, “This is the battle going on in Turkey.”

Seated at her desk in CYDD’s headquarters inIstanbul, Dr. Saylan works under the watchful gazeof Kemal Ataturk, whose eyes, blown up large,stare out at her from a wall on the other side of theroom. “People like to applaud me,” says this proudand combative citizen of Turkey. “But I say, ‘Don’tclap. Do as I do. Solve the problems.’” Her heroAtaturk looks on approvingly. ■

Seeking Equal Opportunities for AllFor Prof. Dr. Turkan Saylan, leprosy is one piece of a bigger picture.

Dr. Saylan received the International Gandhi Award for Leprosy in 1986

“People like to applaud me.I say, ‘Don’t clap. Do as I do.Solve the problems.’”

4

FTEL Dec 07 • No. 29

4

From the Caucasus to the Congo During a busy two-month period, the goodwill ambassador travels to six countries,including those where leprosy is still a public health problem, and others which seeonly a handful of cases a year.

AMBASSADOR’S JOURNAL

INDIA (OCTOBER 9-13) In October, I traveled to India for the launch ofthe Sasakawa-India Leprosy Foundation, or SILF(see page 2). SILF’s role is to help break downthe stigma and discrimination that surroundleprosy. Among its tasks will be to assist peopleaffected by leprosy and their families in gainingaccess to education, skills training and micro-financing. The Nippon Foundation provided anendowment of $10 million and SILF hopes tosupplement this with additional support fromthe Indian corporate sector. SILF will also act asa catalyst for putting groups of leprosy-affectedpeople in contact with existing self-helpprograms for disadvantaged communities.

The chief guest at the establishmentceremony in Delhi on October 9 was formerPresident of India Dr. Abdul Kalam, who spokeof the need for “rehabilitation withcompassion.” One of the key goals is to breakdown the social and economic barriers thatseparate self-settled leprosy colonies from widersociety. This will take time; the first step is tomake the colonies self-sufficient.

A reception attended by Indian FinanceMinister P. Chidambaram in the evening wasfollowed 24 hours later by another SILF launchevent, this time in Mumbai. While there, I tookthe opportunity to call on several of India’s topindustrialists to explain the workings of the newfoundation and seek their advice and cooperation.

There was also time for a short field visit,which took me to Trombay, a colony onMumbai’s outskirts. Founded in 1942, it is hometo 3,500 people affected by leprosy and theirfamilies, including about 1,000 children.

The colony has its own school. Tuition isfree, so it also attracts pupils from outside thecolony. As a result, it plays an important role inforging ties with the surrounding communityand helping to reduce stigma and discrimination.

No one in Trombay begs for a living. Buteconomic self-sufficiency is the major worry.City authorities put a stop to the production ofbootleg liquor, which had been an importantearner, and the colony is now looking for newways to generate income.

NEPAL (OCTOBER 13-15) From India I traveled to Nepal to attend aseminar on leprosy elimination. Nepal is one ofthe four countries yet to achieve the elimination

goal but is moving in the right direction.Organized by the government with the help ofthe WHO, the meeting heard Minister of Healthand Population Girirajmani Pokharel say thatNepal hoped to reduce the registered prevalenceof leprosy to below 1 case per 10,000 populationsometime next year.

Currently, Nepal has 3,700 leprosy cases, anda prevalence rate of 1.45. The elimination goalhas already been achieved in 42 out of Nepal’s75 districts, but 20 out of the remaining 33districts account for 80% of the leprosycaseload. All of these are in the Terai region.

The political and geographical realities ofNepal have made eliminating the disease achallenge, and matters have not been helped byfrequent “changes of guard” among those incharge of the effort. In addition, stigma anddiscrimination remain a problem, and muchmore must be done in the area of rehabilitation.

However, the central government doesrecognize the problems and is working toresolve them. It is also able to count on thesupport of experienced NGOs, both local andinternational, key representatives of whichattended an advocacy workshop the next day.

Because of the situation on the ground, itwas unfortunate that people responsible forimplementing the strategy at the regional anddistrict level could not attend. They are vital forbringing services into the field, and we need tohear from them about the challenges they face.On my next visit to Nepal, therefore, I plan tovisit the front lines, meet them in person, andsee the situation for myself.

Kathmandu seminar updates participants on Nepal’s progress

FTEL Dec 07 • No. 29

5

TURKEY (OCTOBER 16-18) Leprosy on the Anatolian peninsula has a longhistory, with leprosaria dating back to Romantimes. But not until the advent of the TurkishRepublic in 1923 were systematic attempts begunto screen and record cases of leprosy. Turkey haslong since eliminated the disease as a publichealth problem and last year there were justseven new cases.

A remarkable lady who has played a pivotalrole in tackling the disease in her country isProfessor Dr. Turkan Saylan, whom I had thepleasure of meeting when I called on the IstanbulLeprosy Hospital.

The hospital, which is not far from Istanbul’sairport, began functioning as an independentleprosy hospital in 1981. However, the hospitalbuildings — converted army barracks located onthe grounds of a mental hospital — had been usedto accommodate leprosy patients since 1927.

Currently the hospital is home to 22 peoplesuffering from leprosy-related disabilities, theyoungest of whom is 45. It also offers surgicaltreatment and rehabilitation, and sees outpatients.

Dr. Saylan served as director of the hospitalbetween 1981 and 2002. Now retired, she remainsactive in a Turkish NGO focusing on educationalprojects (see page 3).

One of the admirable things about theapproach championed by Dr. Saylan and hercolleagues is that they not only attended topatients’ medical conditions, but also focused ontheir social needs. Based on the idea that medicaltreatment and social support are equally important,patients were properly cared for, provided with

protective shoes and glasses, given assistance forsocial and economic rehabilitation, and theirchildren provided with scholarship funds. In otherwords, Dr. Saylan and her team adopted a holisticapproach to dealing with leprosy.

I was deeply impressed by Dr. Saylan’smethods. At the same time, I was also remindedhow implementing such a far-sighted approach toproblem-solving requires a person with strongleadership qualities — precisely the qualities thatDr. Saylan so obviously possesses.

AZERBAIJAN (OCTOBER 20-22) From Turkey, I traveled via a conference in Georgiato Azerbaijan. This was my first visit to thisenergy-rich nation, which achieved itsindependence in 1991 with the breakup of theformer Soviet Union.

My purpose was to go to the Umbaki leprosysanatorium, located some 80 kilometers southwestof the capital, Baku. The sanatorium was relocatedseveral times before it took over what had been atemporary camp for oil workers in the Gobistandesert next to Umbaki village in 1957. The camp’sout-of-the-way location was doubtless deemedideal for its purpose.

The route out of Baku follows the coastline ofthe Caspian Sea, along a good road that leads tothe vast Sangachal terminal, one of the largest oiland gas terminals in the world and a symbol ofAzerbaijan’s mineral wealth.

Turning off at the sign for Umbaki, our partythen headed inland along a deeply scarred road indesperate need of repair. It was only a further 25kilometers to our destination, but took another one

Umbaki sanatorium is located in a former oil workers’ camp, about 80 kilometers from the Azerbaijan capital.

6

FTEL Dec 07 • No. 29

and a half hours. The barren landscape andtenuous link with the outside world served tounderline the isolation of the sanatorium.

Eventually we reached our goal. Lying justbeyond Umbaki village, the sanatorium came intoview — a cluster of ageing buildings surroundedby a low wall. In contrast to the stark nature of thesurrounding landscape, trees dotted the compound,many of them heavy with pomegranates.

In the days of the Soviet Union, Umbaki wasthe only leprosy sanatorium in the southernCaucasus, treating cases from Georgia, Armeniaand Azerbaijan. At its peak, in the 1960s and1970s, there were roughly 200 patients. Today it ishome to around 30 residents, among them apublished poet, Mahmud Mahmudov.

We were taken on a tour of the sanatorium byits director, Dr. Vidadi Aliyev, who makes thepunishing journey from Baku to Umbaki severaltimes a week. He first took us to a dilapidatedbuilding to show us how residents used to live.Windows were broken or missing, there wereholes in the walls and roof, and in general thestructure was in a terrible state. “We shared it withfrogs and snakes,” said Mr. Gasym, one of theformer occupants.

The intervention of a charity run byvolunteers changed all that. Since 2003,Community Shield Azerbaijan has raised moneyto completely refurbish two residential blocks,transforming the lives of residents, who now livein draught-free rooms, enjoy hot showers, andheating provided by gas stoves. The charity hasalso donated several converted shippingcontainers to serve as a barber shop, laundryroom, shower room, restroom and morgue.

As I toured the sanatorium, I was struck byhow nicely residents had decorated their rooms,with many of them displaying photographs andother personal effects. I was told that Azeris like towelcome people into their homes, and certainly Ishall not forget the warmth with which Umbaki’s

residents greeted me as I toured theiraccommodation — nor the isolation in whichthey have been forced to spend their lives.

DR CONGO (NOVEMBER 6-10) I last visited the Democratic Republic of Congo in2005, when registered prevalence of leprosy was1.5 per 10,000 population. Since then, the rate hascome down to 1.2, notwithstanding the manydifficulties the health services face, especially innorthern and eastern parts of the country as aresult of war, continuing insecurity andlawlessness.

Among the DRC’s peoples, the Pygmypopulation is said to have an especially high rate ofleprosy. To learn more about this, I traveled toOriental Province in the northeast of the country.My destination was Wamba, an administrativedistrict of about 100,000 people of whom some30,000 are Pygmies.

To reach Wamba, I flew from the provincialcaptial Kisangani in an 11-seat Cessna belonging toAfrican Inland Mission, accompanied by the DRChealth minister and the provincial health minister.Up until the last minute, it was not clear if wewould be able to make the journey because ofquestion marks over the state of the Wambaairstrip. Furthermore, the pilot was insistent thathe could take no more than nine passengers, soone of our 10-strong party had to stay behind. Asit turned out, we would be grateful for this later.

As we approached Wamba, we could see fromthe air a short, red runway cut into the forest, and

At home with one of Umbaki’s 30 residents

The prevalence of leprosy among pygmies is as high as 57/10,000.

7

FTEL Dec 07 • No. 29

7

large numbers of people waiting for us. Severaldays earlier, the local people had cut the grass andtrees around the runway in preparation for ourvisit. But the runway itself was in bad shape, andupon landing the plane was badly jolted beforecoming to a stop.

After being greeted with music and dancing atthe airstrip, we drove for about 30 minutes to theheart of Wamba district. About 500 Pygmies hadcome in from the surrounding forest to meet us,some having set out three days before.

As we drew near our destination, the routewas lined on both sides with Pygmies. Short instature (averaging 1.5 meters), many had skinpatches indicating leprosy, as well as ulcers andsores suggesting other skin diseases. While I sawsome people with deformities, there were nocases of severe disability. Later I learned that onlythose capable of walking through the forest hadmade the journey.

Registered prevalence among the Pygmies issaid to be 57 cases per 10,000 population, but it isimpossible to say how accurate this figure is.Pygmies tend to live deep in the forest, movingfrom place to place and making it difficult to keeptrack of cases.

Doctors and nurses visit the jungle on a regularbasis to look for leprosy cases, and when theyfind one they entrust the drugs to the headmanand ask him to supervise treatment. But accordingto one story I heard, the headman distributesmedicine to everyone, regardless of whether ornot they have leprosy, because all members of thetribe are treated as equals.

As we prepared to leave the village, we wereplied with gifts, including a miniature antelopeand a myna bird that we had to politely decline. Iwas also given a lucky cane, which I think I cansay had an immediate effect.

On returning to the airstrip, we found thepilot in serious mood. He said he had beenassured that the runway was 1,000 meters long,and had approved the flight on that basis. But onmeasuring it, he found it was only 650 meters: itwould be touch and go whether we could takeoff. Heading down the bumpy runway, itseemed as if we would never become airborne;

but at the last possible moment we did —thankful that we didn’t have that tenthpassenger to weigh us down.

TANZANIA (NOVEMBER 12-14)

From the DRC I traveled to Tanzania. When I lastvisited in 2005, I had promised to come back andcelebrate when the country passed the eliminationmilestone. Hence it was with real pleasure that Ireturned to mark Tanzania’s achievement.

I also included a visit to Zanzibar on myitinerary, because I had heard there are still quite afew leprosy cases there. Zanzibar, whose twomain islands are Unguja and Pemba, is part ofTanzania, but still enjoys a high degree ofautonomy.

In fact, I learned from the health ministry thatregistered prevalence on Zanzibar is as high as 1.4per 10,000 population. Although Tanzania mayhave achieved the elimination goal at the nationallevel, there is clearly no room for complacency.

In my meeting with Zanzibar’s PresidentKarume on Unguja, I impressed upon him theneed to do more to tackle leprosy. He promised tosee that schools would screen for the disease, andthat pupils would be taught about it in theclassroom. But he also pointed out that inZanzibar at least, there is little discriminationagainst people affected by leprosy.

Flying on to Pemba, I traveled to a villagewhere about 30 families affected by leprosy liveamong the general population. I stopped at akindergarten, where, just as the president hadsuggested, there was no stigma and the childrenstudied side by side. Afterward, I had lunchoutdoors with members of the leprosycommunity. As we chatted under a papaya treeabout life in the village, I thought of thediscrimination that so many others still face, andwas happy that here at least they could livetogether with their families, integrated into thewider community. ■

About 500 Pygmies came infrom the surrounding forestto meet us.

Pupils at a school on Pemba island, Zanzibar

8

FTEL Dec 07 • No. 29NEWS

©2007 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.

FOR THE ELIMINATIONOF LEPROSY

PublisherYohei Sasakawa

Executive EditorTatsuya Tanami

EditorJonathan Lloyd-Owen

Associate EditorsAkiko Arakawa, James Huffman

LayoutEiko Nishida

PhotographerNatsuko Tominaga

Editorial Office5th Floor, Nippon

Foundation Building, 1-2-2 Akasaka, Minato-ku,

Tokyo 107-8404Tel: +81-3-6229-5601

Fax: +81-3-6229-5602smhf_an@tnfb.jp

With support from:Sasakawa Memorial Health Foundation,

The Nippon Foundation

www.nippon-foundation.or.jp/eng/

Thailand — A Model Case?Why success must not result in a lessening of vigilance

What does Thailand’s success in controllingleprosy have to teach other countries? A reviewof case detection trends between 1965 and 2005published in the WHO’s weekly epidemiologicalrecord contains some pointers

Thailand introduced a national leprosycontrol program in 1955, reducing prevalence ofthe disease from 50 per 10,000 population in1953 to 12.42 in 1971. Based on this success, itdecided in 1971 to integrate leprosy controlactivities into the general health care services.

From 1971 to 1975, approximately 1,100 to1,800 new cases were detected annually (3.2 to4.1 per 100,000 population). As the pace ofactivities picked up, the number of new casesdetected annually increased, peaking at 4,463 in1981 (9.5/100,000). Since then, the number has

fallen to 638 cases in 2005 (1.03/100,000). The review concludes that multiple factors

have contributed toward this decline, includingimproved access to diagnosis and treatment andincreased socioeconomic development leadingto better living conditions. However, it alsoillustrates why continued vigilance is required.

While the absolute number of new casespresenting with grade 2 disabilities hasdeclined, the proportion of new cases hasfluctuated between 11% and 15%. Thissuggests that as leprosy becomes less prevalent,awareness among health staff and the generalpublic will likely lessen, which could result indelays in self-reporting. Hence Thailand’ssuccess also underscores the importance ofmaintaining control activities.

Each shudder and jolt of the four-wheel-drivevehicle on the road to Umbaki leprosarium inAzerbaijan serves to hammer home thephysical and psychological isolation of its 30-odd residents from the outside world. In acountry with few cases of leprosy, they arevery much out of sight, out of mind. But notentirely.

For several years now, a group of expatriatevolunteers has helped the leprosarium in variousways, including raising funds to refurbish theresidents’ living quarters, which had been in aterrible state. Their efforts mean the agingresidents now live in dignity and comfort.

Attention of another sort has come with arecent film about an ill-starred romancebetween a young doctor and a patient, basedon a best-selling novel depicting Umbaki. Forall its artistic merits, the film perpetuatesnotions that leprosy is spread by touching, thatpatients need to be incarcerated in asanatorium, and, in one of the film’s moredramatic scenes, implies that pregnancies mustbe terminated.

Given that most people know so little aboutleprosy to begin with, this film will reinforcestereotypes about the disease rather than shedlight on the modern-day reality.

ROAD TO UMBAKI

FROM THE EDITORS

Leprosy FACTSAccording to WorldHealth Organization fig-ures published inNovember, registeredprevalence of leprosy byWHO region (excludingthe European Region) atthe beginning of 2007stood at 231,361 cases.New cases detected dur-ing 2006 totaled 265,661.

‘NOTHING FOR US WITHOUT US’A Western Regional Empowerment Workshop was held in Mumbai,India, on November 23. Some 570 delegates, mostly from leprosycolonies in Rajasthan, Gujarat, Maharashtra and Chhattisgarhattended. Organized by the National Forum, the conference also sawthe launch of MITRA (“friend”), a newsletter in Hindi and English toreflect the views of people affected by leprosy.

LEPROSY CONTROL IN POST-ELIMINATION ERA INDIAA group of experts met on November 7 in Chennai to discussmethods for monitoring and evaluation of leprosy control in Indiain the post-elimination era. The meeting was organized by theIndian government, WHO and Indian Council of MedicalResearch. Its recommendations will be published shortly. ■