Failures in Global Health?

Three years ago, in July 2019 Dr. Madhukar Pai, Associate Director, McGill International TB Centre in Canada wrote an article on "Failures of Global Health". In this article he had written:

In global health, we love to talk about success stories and publish interventions that seem to work. Eradication of smallpox, dramatic decline in polio incidence, reduction in child mortality, etc. But we also know global health deals with huge, complex, challenges. And involves several agencies and stakeholders with their own agendas and political instruments. So, failure is guaranteed. Failure is a powerful tool for learning, and we can always learn from failed interventions and projects.

Then Pai went on to list some of the major failures in Global Health: "I do not see a similar openness about failure in the global health arena. To be sure they are discussed in hushed tones in the corridors of global health agencies in Geneva, New York and Seattle, but not quite publicly, in a way that facilitates learning."

I think that Pai was a little superficial for at least 2 of the failures (leprosy elimination in India and the goal of health for all) on his list. I feel that it is simplistic to give summary judgements of success or failure without taking the time to go and study what had really happened and the documents from that period. IMO, such views could have been understandable in past but in the internet age, so much information is openly available, such a judgement from Pai is less defensible.

Background

During the 1990s and 2000s, I was active in the discussions about Global Health at international level, for example, in the People's Health Movement (PHM). In that period, I was collaborating regularly with the World Health Organisation (WHO) in Geneva. Around 2004-05, for a couple of years I was also the president of ILEP, the international federation of organisations fighting leprosy. Thus, I witnessed firsthand most of the things about "Health for All" and "Eliminartion of Leprosy", I am writing about in this post.

The Failure of Leprosy Elimination in India?

Point number 9 on Pai's list of Global Health failures is about leprosy control in India. He says that it was a failure because, "In 2005, India declared leprosy to be eliminated and scaled-back on its leprosy programmes. Today, according to WHO, India harbors 60 percent of the world’s cases, with more than 100,000 new diagnoses each year." He links his judgement on this point to an article from New York Times, "In India, a Renewed Fight Against Leprosy - Health workers thought they had vanquished the disease in 2005. But it lived on, cloaked in stigma and medical mystery."

I believe that this is an unjust and superficial judgement about the leprosy services in India and its achievements. The "failure" in this case, if we can call it that, should be attributed to the World Health Organisation (WHO), which had set up the "Leprosy Elimination Goal - to reduce the prevalence of leprosy to less than 1 per 10,000 population by the year 2000".

The WHO goal was actually for "reducing the leprosy burden" but it was called "elimination goal" for political reasons. In 2000, WHO had declared that the elimination goal had been reached at the global level, but India was not included as a success at that time. India had managed to reduce its leprosy burden to the level of WHO's elimination goal only in 2005.

Declaration of "Global Leprosy Elimination" did lead to premature closure of many leprosy programmes around the world, but fortunately not in India.

Instead of asking about the "failure of India's leprosy programme", we should be asking - "What is the impact of setting international disease-control targets and what can we learn from the experience of WHO's Leprosy elimination goal?" I want to answer that question in this post.

I am writing this post from my memory of the events, but a lot has already been written about it, as can be seen from a simple literature search.

WHO's Leprosy Elimination Goal

The goal of "Eliminating leprosy as a public health problem by the year 2000" was decided by the World Health Assembly (WHA) in May 1991. This goal was aimed at a reduction of leprosy-prevalence to less than 1 case per 10,000 population and was not aimed at reducing the incidence of leprosy (number of new cases). Thus, in this goal, the word "elimination" did not mean how ordinary people understand this term. Everyone involved in setting up the "elimination goal" knew that it was not possible to actually "eliminate" leprosy in the sense of "not having any new cases of the disease".

What was the rationale behind the decision of setting up this goal? The official reason was that if we could reduce the prevalence of leprosy in a population, the pool of infected persons would decrease and gradually the disease incidence will also decline. People and organisations working in leprosy control such as ILEP had opposed the "elimination goal" but were over-ruled (some of those discussions never really stopped and even today continue in some form on LML, 30 years after the decision of WHA).

Need for the Leprosy Elimination Goal

There was another reason, a more important one, for setting the Leprosy Elimination Goal. MDT, a new combination of drugs for treating leprosy was recommended by WHO Expert Committee in 1982. A review meeting organised by WHO on the progress in the implementation of MDT was held in Brazzaville (Congo) in 1990. It had shown that after 8 years of recommending and promoting MDT, globally less than 15% of the leprosy patients were being treated with it, while the remaining persons were still taking only Dapsone (in many endemic countries, the percentage was less than 5%).

I believe that this situation was linked to 2 other issues - (1) most of the leprosy programmes were being run by NGOs and missionaries, while the governments played little or no role in them; (2) the programme decisions were made by clinicians, who focused on individuals and not on the collectivity. Thus, while the WHO had been pushing for the adoption of MDT, doctors working in leprosy programmes felt that MDT administration needed their personal supervision and were hesitant to start it in rural areas where doctors were not available.

The "Elimination goal" was targeted at the governments, asking them to assume greater responsibility and, simplify and expand the use of MDT without requiring supervision of doctors and it achieved great success in reaching both these objectives - MDT coverage increased across the world and national governments took over the responsibilities for running their leprosy programmes from the NGOs and the missionaries.

International Pressure to Reach the Leprosy Elimination Goal

Fixing international targets and goals can motivate governments and people but it also has some side-effects. For example, for the leprosy elimination goal, once the  target was fixed, there was a lot of pressure on countries to reach the goal. If a country did not reach the goal then this meant that their programme was not good or their health staff were not working properly. On the other hand, there were insufficient discussions about the strategy itself, that reducing the numbers in high endemic areas within that period was not feasible because the other instruments to control leprosy (such as a simple serological test for diagnosis or a vaccine for its prevention) were missing.

When it became clear that many countries like India and Brazil would not reach the elimination goal by the year 2000, there were other effects. So, under the new WHO guidelines, treatment duration was reduced, active search for new cases was stopped and countries were encouraged to quickly integrate vertical leprosy programmes into their primary health care systems. All these measures helped in reducing the identification of new cases, the numbers decreased and India could reach the goal in 2005.

I remember the press-conference during WHA in Geneva in 2005, during which the announcement about "elimination of leprosy as a public health problem in India" was made as a triumph of the global health.

Impact of the Leprosy Elimination Goal

As explained above, the "elimination goal" was actually a "reducing the disease burden goal" and its objectives were to expand MDT and to improve government run leprosy control services. The elimination goal was successful in both these objectives. Expansion of MDT had a huge impact and millions of persons could be treated effectively and a large number of complications such as disabilities were prevented. Thanks to the goal and expansion of MDT, individuals affected with leprosy could be fully treated in 6-12 months and avoid most of the complications. Finally, for the health workers leprosy was like any other disease.

Once it achieved those results, ideally WHO should have clarified it and explained to the countries that we had not eliminated leprosy, we had only reduced the disease prevalence. However, that was not possible due to political reasons. Many persons involved with this issue in WHO had also started to believe that with reduction of disease burden, the disease transmission will be interrupted and the number of new cases will start deceasing, and were very optimistic. Unfortunately that did not happen and the fall in the number of new cases over the past 20 years has been much slower. The image below shows the participants in a WHO meeting in 2005 (Dr Lee, DG of WHO is in the centre, while I am the first on the left ) to talk about the leprosy elimination goal.

Reaching the "leprosy elimination goal" had consequences. Thus, in different countries across Asia, Africa and South America, reaching the goal led to many countries to scale-down their leprosy control programmes, even when they still had many new cases. Fortunately for countries like India, Indonesia and Brazil, their health professionals knew that leprosy was still a big issue and they could continue the leprosy programmes, but for many smaller countries, especially in Africa, achieving the elimination goal led to elimination of their leprosy programmes for many years.

This leads us to the question of the need for goal-setting and international pressure for reaching numerical targets. When your country is lagging behind in reaching an international target, what happens to its health workers? The answer is easy to guess - if they do not show the required impact on the disease condition in their work areas, they will be labelled as a bad workers and their programme will be called a badly-run programme, without looking at the real situation on the ground. So what are the options for them? In many leprosy programmes across the world, when their new cases did not decrease, many of them stopped registering new cases and therefore, manipulated their data.

For example, at the African Leprosy Congress held in Johannesburg in 2005, it had come out that Tanzania which had apparently reached the elimination goal in 2000, had actually manipulated its data for achieving the goal and the actual number of cases was still high. 

Unfortunately, the negative impact of the term "leprosy elimination" for this goal continues to create problems even today, because countries and health workers start beliving that do not have a significant leprosy problem.

For example, in 2016, I was involved in the evaluation of a leprosy programme in a couple of districts in central India. The evaluation showed that eleven years after reaching the WHO goal, district health officials were still confused about its meaning and many health workers complained that if they find "too many new cases" it created problems for them because the districts with higher number of new cases were seen as "bad districts".

Over the years, WHO keeps on finding new goals for the leprosy programme but the confusion created by "leprosy elimination programme" continues to exist and to create problems.

Let me now touch briefly on the "Impact of Health for All" goal of WHO. 

Failure of Alma Ata Declaration

Pai's list of failures of global health also includes the failure of the Alma Ata declaration and the goal of "Health for all by the year 2000". In his article, he had written that, "Failure to deliver on the Alma-Ata declaration: Despite the 1978 Alma Ata declaration on "Health For All by 2000", nearly half the world's population lacks access to essential health services."

Alma Ata declaration on the Primary Health Care in 1978 with its goal of "Health for All by the year 2000" was one of the biggest utopias which has motivated and mobilised the health activists all over the world for almost five decades. Even today, the echoes of that call continue to reverberate among us. I think that a summary judgement that the goal of Health for All was a failure, does not take into account the impact it had and continues to have even today, for example its influence on the discussions about the Universal Access to Health.

Fifteen years ago, I had some opportunities of talking about Alma Ata with Dr Halfdan Mahler, who was the director general of WHO during the Alma Ata conference and one of its main inspiring figures. Dr Mahler, originally from Denmark, had been working in the TB programme in India, before taking up the role with WHO (in the picture below, from left - Hani Sareg/Egypt, Armando/Brazil, I and Dr Mahler in Geneva during a World Health Assembly).

Some Achievements of Alma Ata Declaration

I think that Alma Ata declaration was an impossible dream but it was an important ideal at that time because it was so inspiring. I would not call it a failure, I think that it was and continues to be one of the most successful ideals of Global Health. It helped in achieving some important services - from my personal experience of working in international health programmes, three elements are mentioned below as an example:

(1) Alma Ata declaration and health for all was not a single goal. It had many elements in it, and many of them were implemented successfully. For example, the essential medicines and the programmes for fighting against different infectious diseases, both of which had a huge impact.

(2) For 30 years, I was involved in Community- based Rehabilitation (CBR) programmes (also known as Community-Based Inclusive Development or CBID) aimed at persons with disabilities in rural areas of lesser developed countries. The CBR approach was a part of the Alma Ata dream, which had developed independently because PHC approach was struggling for its own implementation. CBR also had a positive impact on thousands of lives of persons with disabilities and their families all over the world.

(3) Another related programme, which was inspired from Alma Ata and has been finally realised in the past couple of years is that of Priority Assistive Products list, which brings assistive technology to persons with disabilities and elderly persons.

I am sure that others can come up with many other examples of successful programmes which were inspired by the spirit of Alma Ata declaration. May be they were not fully achieved in 2000. Certainly, a large number of people still do not have access to essential health services, even in rich countries like USA. But a lot has been achieved since the Alma Ata declaration as shown by the evolution of global morbidity and mortality data across countries.

Impact of Other Factors

In terms of learnings from the Alma Ata declaration and the "Health for All by 2000" goal, for me a key take-away point is that health services and related goals can't be seen in isolation, they need to be looked at against the background of everything else happening in the world, including wars, famines and the role of international institutions.

I remember many discussions in People's Health Movement during which one reason had come up repeatedly for not having achieved a full primary health care (PHC) services approach across the countries - the decision by UNICEF to implement selected elements of child care because they felt that countries did not have sufficient resources for a full implementation of the PHC approach. Looking back, I don't think that UNICEF was to be blamed because in any case, the idea of providing free primary health care to everyone everywhere was an impossible dream in a world which was controlled by forces that did not see this as important or feasible.

During the debt crisis of the 1990s, the International Monetary Fund (IMF) and the World Bank, by promoting austerity policies, had hammered a big nail in the PHC's coffin. Since then, over the last 30 years, looking at health services purely in terms of numerical calculations of costs-benefits, cost-cutting and privatisation across countries, including those which had a good model of universal health care such as UK and Italy, has further taken us away from the Alma Ata trajectory.

A second Alma Ata conference was held in October 2018, which agained called for universal health coverage and sustainable development goals. However, I doubt that it is going to stimulate the dreams of activists around the world like the Alma Ata declaration had done in 1977. This may be also because today we live in a different world, a world of climate change, AI and internet, where new goals are set and forgotten all the time. The Millennium Goals have gone by, the Sustainable Development Goals are coming and setting international goals is a business strategy and not an exercise in idealism.

Conclusions

Pai's list of "global health failure" provoked me to write this post. As my explanations about leprosy and Alma Ata show, each of these points can be subjects of debates, and the answers may not always be negative. I think that similar provocative statements can be very useful to stimulate us to go deeper, study what had happened and reflect on the lessons we can learn from those expereinces.

A key point of Pai's article was that we don't learn from our failures. I am not sure if it is true. I think that the professionals involved in each of these "failures" must have debated and reflected on what happened and why for a long time, like we did about leprosy elimination. However, as time passes, all those discussions are forgotten and unless one takes the trouble of going back and reading through different point of views, the lessons learned can be easily lost.

(Note: an earlier version of this article was published in my blog in October 2021)

Is there still leprosy in India?

Recently in a Twitter debate, a message said that leprosy was eliminated in India in 2005. Then another person asked, “So it means we have no leprosy in India?” The answer was that India still has leprosy but it is below the WHO cut-off level, implying that it was no longer an important issue.

I intervened at this point, specifying that every year, India has about 130,000 new cases of leprosy and I feel that it is still an important issue for public health in India.

I can understand why people get confused. If it is true that leprosy was eliminated in India in 2005, then how can we still get 130,000 new cases of leprosy every year?

The answer is that in this case, WHO has a specific definition of “elimination” – it refers to persons registered for treatment for leprosy at the end of a year. If number of persons receiving treatment at the end of year is less than 1 per 10,000 population, according to this definition, it means that the country has “eliminated leprosy”. That is how, India has eliminated leprosy even if we get 1.3 lakh new cases every year.

The old definition of "leprosy elimination" when its prevalence goes below 1 per 10,000 population is an old definition and is no longer useful. However, in public health, old definitions can continue to have their own life and continue to create new confusions! To understand, how we came to this situation, we need to rewind and go back to 1989.

New treatment of leprosy

A new treatment of leprosy was proposed in the early 1982 by the World Health Organization (WHO). This treatment included 3 drugs – Dapsone, Clofazimine and Rifampicine. Being a combination of drugs, the new treatment was called Multi-Drug Treatment or MDT. Before MDT, people needed to take leprosy treatment for decades or even all their life without ever getting cured of the infection. With MDT, within 1-3 years, people could be completely cured of the infection.

Though MDT was such an effective treatment, hospitals and doctors treating leprosy were slow to adopt it. It was thought that doctors needed to carry out some tests before starting MDT and then directly supervise people receiving this treatment. Since in poor countries, laboratories for doing the tests and doctors to supervise the treatment were lacking, most people with leprosy were not given the new drugs, even if they were so much better compared to the old treatments.

In 1989, WHO had organized a meeting in Brazaville in Congo to talk about leprosy and MDT. I was there in this meeting. I don’t remember much about that meeting except for the dismay of many participants that in spite of so much efforts, in most countries less than 10% of the leprosy cases were being treated with MDT. The question was what to do to ensure that everyone could be treated with the new drugs?

Elimination strategy of WHO

In 1991, leprosy team of WHO came out with a solution to strengthen the use of MDT in treating leprosy patients - it was called the New Strategy for Leprosy Elimination. To promote the treatment with MDT, it asked countries to focus on bringing down the leprosy prevalence (by decreasing the number of persons being registered for treatment at the end of year) by the year 2000. As persons completed their treatment, their names could be removed and the prevalence would decrease. The idea was to ignore the number of new cases but to focus on giving them treatment and removing their names from the leprosy registers.

The key to bringing down the prevalence of leprosy was to treat people with MDT. To facilitate it, the treatment duration was decreased and diagnosis of leprosy was simplified – you didn’t need to do any tests for starting MDT and doctors were not needed to supervise the medicine-taking by the patients.

In India, new MDT programmes were started mainly in south India around the last part of 1980s and early 1990s. Only towards the end of 1990s, these MDT programmes reached north India. Only around 1998-99, India managed to treat all its new leprosy patients with MDT. Thus, India was not able to reach the elimination goal of WHO in 2000, but it managed to achieve it in 2005.

There was another idea underlying the elimination strategy – WHO experts thought that if we could treat all infected persons in a community, then the level of infection will drop, slowly the disease transmission will automatically decrease and new cases of leprosy will also come down over a period of time.

Leprosy elimination strategy had many positive effects – it managed to increase the MDT coverage to 100% - all leprosy patients started to be treated with MDT. However, it also had a negative effect – when countries reached the elimination goal, they thought that their leprosy problem was finished and often they stopped paying attention to it.

Leprosy in India today

As mentioned earlier, India still has about 130,000 new cases of leprosy every year. After India reached the “elimination” in 2005, we stopped routine looking for new cases of leprosy in the communities. Instead, now we expect them to report themselves to a Primary Health Care (PHC) centres and come for diagnosis and treatment. The Government is supposed to carry out mass awareness programmes so that persons suspected of having the disease can go to PHCs for a check-up. However, persons in villages are not always aware of the different changes and misconceptions about leprosy are common. In fact, many leprosy surveys carried out in India over the past decade, have shown that actual number of persons with leprosy in India is much higher than the official reports.

Over the past 10 years (2007 to 2017), the official number of new cases of leprosy in India has been relatively stable – in 2007, we had around 137,000 new cases, while in 2016 the number was around 134,000. Thus, so far the idea that if we treat everyone, the number of new cases will decrease automatically, has not turned out to be true. Perhaps, there are other factors contributing to this slow decline in number of new cases - for example, some doctors believe that highly infectious cases (LL cases) need longer treatment otherwise they might act as source of new leprosy infections in the communities. Some new strategies, such as "single dose Rifampicine" to persons at risk for prevention of leprosy are being tried.

Is talking About Leprosy Elimination Useful Today?

I feel that today it makes no sense to talk about “elimination of leprosy” in the way this goal was defined in 1991. We want people to come to PHC and get treatment for leprosy and at the same time we say that leprosy has been eliminated. It means that we are giving two contradictory messages to people, which creates confusion.

Over the past 3 decades, I have visited leprosy programmes in a large number of countries and seen the impact of MDT - I have seen the leprosy situation change in front of me. Today, most new cases of leprosy have few signs of the disease. If they take treatment, they get completely cured without any disfigurement. Thus, leprosy can be like any other curable disease. However, the situation is worse in far-away areas and even urban peripheries because of misconceptions and lack of awareness. People who come late for treatment, many of them end up with needless disfigurement.

This is also true in India, where persons living in isolated areas do not get early access to leprosy treatment.

All countries where leprosy is endemic are facing this situation. Many decision-makers and people think that leprosy has been defeated but in reality, we still have a significant problem and need good leprosy programmes to identify all the new cases and to treat them early so that they do not develop any disabilities due to the disease.

Conclusions

Today leprosy is easily treatable. It is no longer a dreaded disease even if many persons carry prejudices against persons with leprosy because of lack of knowledge.

Many countries including India, which have “eliminated leprosy”, continue to have significant number of new cases.

(1) I believe that we need to stop talking of “leprosy elimination” - today, it makes no sense. It only creates confusion in the mind of both health workers and communities.

(2) Decision makers need to accept that we have and will continue to have a significant number of leprosy cases in India in the near future, who will need to get treatment and other services. In fact, the current strategies of controlling leprosy need to be reviewed to focus on decreasing the number of new cases of leprosy and to reduce the number of persons who get disabilities due to leprosy. Fixing unrealistic targets to reduce leprosy is not the best way to go about it - it penalises hardworking and good leprosy workers, who are seen as a problem if they keep on finding a large number of new cases.

Note: The author was associated with ILEP (International Anti-Leprosy Federation) for a number of years as a member of the medical commission and as its past president. He has conducted evaluation of leprosy programmes in different countries of Asia, Africa and South America. He is one of the organisers of International Leprosy Mailing list and associated with IDEA, the international organisation bringing together persons affected with leprosy.

The images used in this post are from an evaluation of leprosy programme in some districts of Maharashtra in 2016.

*****

#leprosyinindia #leprosy #ashaworkers #primaryhealthcare #eliminationofleprosy 

Exiled in Spinalonga

The book “The Island” by Victoria Hislop is a story about 4 generations of a family from Plaka (Crete, Greece), marked by love, betrayal and leprosy. It is also about the world of Spinalonga, where persons with leprosy in Greece were exiled for about five decades during the first half of the 20th century.

Isolation of Persons with Leprosy

From prehistoric times, communities across the world had banished persons with leprosy to the outskirts. In early 20th century, developments in microbiology had convinced the doctors that isolation of persons with leprosy was necessary to prevent the passage of infection to others.

Islands were a natural choice for their isolation. Countries had made laws that asked for compulsory shifting of persons diagnosed with leprosy to the designated isolated areas. Thus, children were taken away from their parents, mothers and fathers were taken away from their children, and forced to live in such isolated places. If women in these places became pregnant, they were forced to undergo abortions and if they had babies, these were taken away and given for adoption. These laws were scrapped only around 1960-70s, as new medicines to treat leprosy had become available.

Last year, I had visited the Nagashima island in Japan (image below), which was also used for the isolation of persons with leprosy. There I had heard about Spinalonga island in Greece, for the first time.

The Island by Victoria Hislop

During the three decades of my work with AIFO, I had heard many stories from persons with leprosy about their lost families. Thus, when I had started reading “The Island”, I already had some ideas about what I was going to find in the book.

"The Island" is the story of Eleni, a primary school teacher, her husband, Giorgis, a boatman and their two daughters Anna and Maria, who live in Plaka on the island of Crete. Giorgis supplements his income by carrying supplies to the leprosy-island of Spinalonga.

In 1939, Eleni and one of her students, Dimitri, are diagnosed with leprosy, and are forced to leave their families and shift to Spinalonga. After a few years, Eleni dies. Her daughters grow up with Giorgis. Anna marries Andreas, son of a rich land-owner. Maria is planning to get married to Andreas’ cousin when she is diagnosed with leprosy and forced to shift to Spinalonga.

It is the time of discovering new medicines for treating leprosy and a few years later, the persons are no longer forced to live in Spinalonga because the disease can be cured. Maria returns home and marries a doctor whom she had met in Spinalonga. Anna has a baby girl, Sofia, but has problems in her marriage, and a tragedy waiting for her.

The story is told in flashback with Alexis, Sofia’s daughter who has come to Plaka to learn about her mother’s family.

Comments

The Island is a well-written family saga with strong women characters. For me, its most interesting parts were the descriptions of the life in Spinalonga, including the stories about testing of new medicines for curing leprosy.

Clearly the author had done a huge amount of research to present a well-balanced picture about the situation of leprosy in the early 20th century Greece. Its strong point is that the book is never didactic, and the aspects about leprosy are well woven in the story. While talking about loss and exile, it also tells about love, friendship and solidarity.

Conclusions

The Island was a very successful book. It was converted into a 26 parts Greek-TV serial. Since then Hislop has written a few other books, which have also been successful. At the same time, she has become an ambassador for LEPRA, the British association working for the fight against leprosy.

This book brought the attention of Greek authorities about the unique history of Spinalonga, which is trying to become a UNESCO World Site of Humanity’s Heritage.

I have heard many heart-breaking stories of lost families and lost children during my travels in the old leprosy sites, though there were also some stories of hope and reunions. Though in most countries, the laws regarding forced isolation were changed during the 1970-80s, persons who had lived away from their families for decades, had often continued to live in their old leprosy centres, because those prisons had become their homes where they had forged new bonds of kinship with their fellow companions.

Earlier this year, while travelling in India, I had met Chait Singh who had been forced to leave his village and live an ashram, because he had leprosy. While telling me about his village, his eyes had filled with tears. This post is dedicated to him and to all those persons who continue to be exiled because of continuing prejudices and stigma against leprosy.

*****

#leprosy #spinalonga #historyofleprosy #historyofmedicine #bookreview #victoriahislop 

The spy who came in from the leprosarium

Ideally, spies are people whom you would never suspect. Thus, they mix in with the background, so that we stop noticing them. Or they become so prominent that we take them for granted. Yet another strategy is to associate them with a condition that evokes fear, so that the spy-catchers do not wish to get close to them.

Ben Montgomery's book "The Leper spy" is about a person who was able to become a spy because she carried the signs of leprosy on her body. This post is about Montgomery's book, as well as about another story from Italy during the second World War, where leprosy had played an important role in saving many lives.

Ben Montgomery's book "The Leper Spy"

The book "The leper spy: The story of an unlikely hero of World War II" is the story of a woman called Josephine "Joey" Guerrero from Manila, who was diagnosed with leprosy, some months before Japan attacked and occupied Philippines. Joey was married to a doctor and had just delivered a daughter.

Joey decided to volunteer and help the American prisoners of war and resistance-fighters in Manila. Using the fear of leprosy among the Japanese soldiers, who did not want to go near her, she could visit different parts of the city and collect information about their military structures and plans, and carry them to the Americans.

After the surrender of Japanese forces and the end of the war, Joey found herself in a leprosarium outside the city, where the post-war destruction and lack of resources had a huge negative impact. Joey started writing letters to friends to ask for help. Stories of her work as a spy for the American forces helped to bring her to the US, where she could receive treatment for leprosy with the latest medicines of that time, such as Promin and Dapsone.

Montgomery is an able writer, bringing together the stories of different persons involved in the Second World War in the Pacific region and in Philippines, as well as the stories about the leprosy world in Carville (USA). It is an interesting read and helps to understand the history of Philippines and the early years of development of Carville.

However, while reading the book, I had an impression as if Joey was constantly hiding behind a mask. I could not get a feel about her as a person. In the first half of the book, this was because information about her is very limited. In the second half of the book, the information comes mostly from her official letters and writings. At the end of the book, for me Joey remained a shadowy figure.

During the 1970s, Joey had decided to move away from the limelight, away from being hailed as a heroine and away from being an activist fighting for a better understanding about leprosy. There is little information about the last 25 years of her life, till her death in 1996. The book informs that in this period, she had studied to become a sociologist and was involved in humanitarian work in Latin America and Africa.

However, if we do not look at the book primarily as Joey's life story, it is much more interesting in the way it tells us about the second World War in Philippines and the issues surrounding leprosy in the US in the post second world-war period.

A Genoa leprosarium for helping the Jews

There is another Second World War story, where the fear of leprosy played a role in saving people's lives. This story was shared by Dr Barabino, who works in the leprosy department in the San Martino hospital of Genoa in Italy.

San Martino hospital was started as a leprosy home in the 13th century. Over time, it became a general hospital and expanded. Now it is a big university hospital. During the 20th century, leprosy slowly started declining in Italy. At present, there are only 6-10 new cases of leprosy every year in Italy, and almost all of them are immigrants. This is similar to the situation in most other countries of Europe.

During the second World War, Mussolini in Italy was an ally of Hitler's Germany. Though Italy had promulgated anti-Jew laws in 1938, their deportations to the concentration camps started in 1943, when the German forces entered Italy and took over the command of the war. Around 20% of the 40,000 Jewish persons living in Italy at that time were deported to the concentration camps, where almost 90% of them died. During that period an Italian ex-pilot called Massimo Teglio (left) played an important role in saving many Jewish lives in Genoa.

On 2 November 1943, German soldiers attacked the office of Jewish community centre in Genoa and took away the documents with the list of names and addresses of Jews living in the city. In the following days and months, they started arresting persons and deporting them to the concentration camps. Massimo Teglio created a clandestine organisation called Delasem to save the Jews from the Nazis, to provide them with false identity papers and to help them to escape. A collaborator of Teglio called Lastrina was caught and killed. During this period, the leprosy hospital of San Martino was used as one of the hiding places for the Jews, as the soldiers of the German SS were afraid to go inside because of the fear of catching the disease.

The image below shows one of the old houses used by persons affected with leprosy in San Martino hospital.

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The fear of leprosy is not something belonging only to the past. Today the disease is easily curable but still most persons do not know about it and continue to be afraid of it. I had another experience of this fear in 2010 in Rome, during the ceremony of conferring sainthood on Fr Damien, who had died in Kaluapapa (Hawai) while serving persons affected with leprosy.

For the ceremony many representatives of persons affected with leprosy had come to Rome. Italian organisation AIFO had made arrangements for these delegates to visit the President of Italy and I was part of this group. Normally, all visitors entering the President's house need to pass through a strict security check-up. However, when we went inside, the security staff stood back and did not come near us.

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People who have had leprosy do not like the word "leper" as they feel that it is full of negative connotations and creates a stereotypical image of persons. They ask to not to use this word and instead say "persons affected with leprosy". However, in Ben Montgomery's book the word "leper" is used frequently and not just in its title.

Through Twitter, I asked Ben regarding the use of this word in his book. He answered: "Was hoping that using the term sparingly and within proper historical context would mitigate the negative connotation. Hansen's as a descriptor is still relatively foreign, and was almost unheard of during most of the period the book covers."

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Persons Exiled in Nagashima Island

Some of the most beautiful places in the world have been used as prisons. Nagashima in the south-west Japan was one such island which became a sanatorium-prison in the early part of 20th century. Its prisoners had not committed any crime, they just had an infection called leprosy.

During my recent visit to Japan, I had the opportunity to visit Nagashima and to learn about its history. This post is about that visit.

Nagashima

Nagashima (Naga = long and Shima = island) in Setouchi (Okayama) is a 9 km long beautiful island. After years of being seen as a place of fear, it is now changing its image.

The sea all around Nagashima is famous for its oyster farming. It is now connected to the mainland by a new bridge - the Oohashi bridge. It is surrounded by farming and fishing communities.

Nagashima As A Place of Exile

In 1930, the Japanese Government decided to create a leprosy sanatorium (Nagashima Aiseien) on Nagashima island.

A few years later, in 1934 the floods destroyed Sotojima Hoyo-in leprosarium near Osaka, killing 173 persons. Before the floods they had tried to shift to a safer place, but local residents did not want them. 416 survivors of the floods wanted to go to a new centre in Osaka but local persons did not want them, so finally they were relocated to the opposite side of Nagashima island to create a second leprosy sanatorium called Oku Komyoen.

Many people who lived on Nagashima changed their names so as to not cause problems for their families.

Doctors thought that by isolating the patients on an island they will stop the transmission of the disease. Over the next few years, the health authorities made very stringent laws limiting the lives and dignity of persons living on Nagashima island. For example, the women were sterilized and forced to abort.

Ancient treatment for leprosy was with Chaulmogra oil. The first modern treatment of leprosy with a Sulphone medicine (Dapsone) started after the Second World War. In the 1970s, more medicines for treating leprosy were discovered and slowly countries started treating leprosy like any other disease.

In 1996 the restrictive laws regarding leprosy sanatoriums in Japan were abolished and the leprosy affected persons of Nagashima were finally free. Over the years, thousands of persons affected with leprosy lived as prisoners in this island. Today in the two settlements there are still residents (about 400 persons), most of them very old.

Visiting Nagashima

A couple of weeks ago I visited Nagashima island during a meeting organised by Sasakawa Memorial Health Foundation (SMHF) on the conservation of history of leprosy. During this visit we were accompanied by persons who had lived their lives in the sanatorium. This visit was an opportunity to see and understand their lives on Nagashima.

The image below shows Mr. Yamamoto, who had lived in Nagashima for around 70 years, ever since he was brought here as a young boy. He was our guide for this visit. Together with him is Ms. Kanae Hirano, our translator from Japanese to English.

I want to mention a few things which made a strong emotional impact on me during this visit.

Beautiful Panoramas

As we went up and down the hills of Nagashima, it was impossible not to be entranced by the beautiful panoramas of the islands and the sea.

The image below shows Tekake-Jima, also known as Benten island, which is connected to Nagashima during low tide and has the Nagashima shrine at its top.

Nagashima Museums

Nagashima has two museums - one is located in the old main office building at Aiseien. It is a beautiful building covered with green creepers.

The other museum is a new building in Oku Komyoen. The museums show artifacts, equipment, maps, medicines, etc. from the old days. For example, Nagashima had its own currency, so that if persons managed to escape they would not have any money to use on the mainland.

The next image shows part of a miniature sculpture of Nagashima with the isthmus of land connecting the old main office building to the area where the staff lived. In 1988, a canal was opened in this part of the island to facilitate the visits of the boats of the oyster farmers, who otherwise needed to go all around the island to reach their oyster platforms.

Charnel Houses

Both Aiseien and Komyoen have charnel houses for keeping the remains of people who died on Nagashima and whose remains were never claimed by their families. The image below shows the Charnel house of Aiseien.

Around the Charnel houses are different other memorials and shrines. The image below presents a shrine next to the Charnel house in Komyoen.

A crematorium was built in Nagashima, mid-way between Aiseien and Komyoen. This site also has a charnel house where remains of other residents are placed. It also includes a memorial to the children and fetuses of women living in Nagashima who were forced to abort (this policy was stopped only in 1954).

In 2002, in a meeting organised by IDEA and held in Seneca Falls in USA, I remember listening to very painful testimonies of some Japanese women who had been forced to abort in the leprosariums. Visiting this memorial brought back the memories of that visit and those testimonies.

Jail of Nagashima

Doctors managing Nagashima had complete powers over the residents including the power to punish and put them in jail. It was operational from 1939 to 1953. Below the hill, the warden of the jail had his paddy fields. Looking at the words scribbled by inmates of the jail on its walls was very moving.

Admissions ward

Persons arriving in Aiseien were taken to this building where all their belongings were checked and prohibited things were confiscated. Their children were taken away. Small children brought there with their parents were sent to schools both on Nagashima as well outside (where they were not well received).

They were given a disinfectant bath with cresol.

This part of the visit made me think of the Nazi concentration camps that I had read. Such places still continue to be used in countries, ostensibly for health-related reasons, for example with mentally ill persons and with immigrants.

Men and women living in Nagashima, if they got married, the men were sterilized but these operations were not always successful. Thus, if any women became pregnant, they were forced to abort. It was the Eugenic Protection Act enacted in 1948 that 'allowed' the parents with mental diseases and leprosy to have abortion legally. This act was amended in 1996, and it was only then that having or having had leprosy or mental diseases could be a condition to have an abortion.

Arrival Jetty

Aiseien had two separate jetties, one near the old main office building, which was reserved for doctors and other staff. The other jetty at the back, closer to the admissions ward was reserved for the patients. Most families accompanying persons affected with leprosy were not allowed to get down and had to say goodbye there.

Some persons arriving in Nagashima knew that they will never see their families again and they will not have an opportunity to leave the island. Many persons, especially the young ones, arriving in Nagashima did not know they were there for life. Many were persuaded to come because they were promised free medication and free lodging, and after cure, going home. They only knew that they were there for good when they got there, asked to change their name, and signed the autopsy agreement.

Looking at the old jetty with its broken down stones, and thinking of the desperation of those persons was one of the most touching moments during this visit.

Conclusions

Nagashima gave an impression of detached, clinical efficiency of dealing with people who had leprosy. It was a closed world with its own houses, schools, orchestra, sports groups, associations, jail and crematorium.

In 1998, some residents of Japanese leprosy sanatoriums went to the district courts to claim that segregating persons on the island was non-constitutional. Not all residents were happy with these law suits and people who fought for this had to face hostilities. The courts agreed with their plea and the residents were awarded a compensation and the Prime Minister of Japan apologised to them on behalf of the nation.

Leprosy had been in Japan for many centuries. First records of the disease are from 8th century. People affected with the disease had faced prejudices and stigma and were forced to live in leprosy villages. However, during all those centuries, the harsh measures adopted in 1930 such as complete isolation in an island, lack of contact with families, forced abortions, etc. had not happened. Why did they happen in the 20th century?

Visiting Nagashima was an opportunity to reflect on the use of medical systems to take away the dignity of people and even to torture them. It has happened in other countries and it still happens in many parts of the world.

Let me conclude with a question for the readers - what is the use of keeping alive the memory of places like Nagashima Aiseien and Komyoen? Can our young generations learn anything from such places?

In spite of the pain and suffering that are easy to imagine when one visits a place like Nagashima, my memories of this visit are also about the sheer beauty of Nagashima and the cheerfulness of the former residents and doctors, who welcomed us, showed us around and shared its history with us.

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