Leprosy – a disease of modern Japan?

This week, I am diverging from the norm and have interviewed a Japanese dermatologist on the topic of leprosy. I met Rie when I was giving my lectures on non-communicable diseases on the Diploma of Tropical Medicine at Nagasaki University. She was giving her tropical dermatology talk and an added bonus one on leprosy in modern-day Japan which was just so fascinating that I had to share it. Many thanks to Rie for allowing me to interview her in English, her second language, just so that it was easier for me!!

IMG_20190630_191538

Leprosy, also known as Hansen’s disease, is an infection caused by a mycobacterium. It has a long latency period of a few years to decades leading to an infection of the skin and nerve damage resulting in the typical leonine facies and deformities if diagnosed late. Although the exact mechanism of transmission is unknown, treatment is effective and curative if started early enough.

“I would describe leprosy, of course, as an infection which presents with some skin symptoms. But it is also a little bit more than just a skin disease – different from other skin diseases because of the social aspect.”

So how did Rie end up as a tropical dermatologist?

“Before, in my medical school years, I was more interested in high-tech medicine. During my first two years of residency [in Japan], however, I thought that so many patients were suffering because of too much treatment. Seeing them, I just thought, ‘okay, I want to go experience a country that has more need for medicine’. With this thought, I went to Ghana for some volunteering medical work. It was only for six weeks — a short time, but then I experienced that, when you go to these countries, they also have good doctors and I felt like ‘okay, being a medical doctor from a foreign country, what can I do?’, and then I got interested in studying public health – global health.

“But at the same time, I also got interested in dermatology and I was not sure how I could combine the two because there are not many people who are dermatologist in the global health field. If you’re a pediatrician, it’s more straightforward!! I had, kind of, nobody to copy or follow!”

“I searched how I can combine these two interests and came across the disease ‘leprosy’. I found out about a leprosy training course in Ethiopia. And that’s where I came to encounter the disease for the first time – my first time. It was after my experience in Ethiopia that I got this job [at the Japanese sanatorium] by coincidence. This turned out to be a big eye-opening experience, because I also did not realize that even in Japan we still had places like these.  So, my entry point for work in the field of leprosy was from the area of global health, but I treasure the experience I had in Japan.”

Rie has also done some WHO consultancy work in the Pacific islands.

“The work includes many aspects monitoring, evaluation and support of the national policy programs: surveillance of persons affected by leprosy; collection of data from the periphery health centres; providing direct training [for health professionals and program managers] and helping set up training courses; organizing procurement of the medications; sometimes educating the community about the disease. In the Marshall Islands, where there are around only 50,000 people, there are a 100 to 150 new patients each year.”

I was so surprised listening to Rie’s talk on leprosy because, in my mind quite naively, I thought leprosy was eradicated in the middle- to high-income countries.

“In India, where there’s the highest number of patients, there’s more than a 100,000 new patients per year. Number one – India. The number two is Brazil, and then comes Indonesia.”

But why? When there is curative treatment?

“Because of lack of awareness and the stigma and fear of coming out to be diagnosed. If there’s some untreated patients, they can transmit the disease to the younger generation and so this transmission is still going on. Also, unlike TB, we don’t hear so much about cases of resistant Mycobacterium leprae [the organism causing leprosy] but there may be some resistance happening, or maybe the patients fail to complete the course of medication, because the treatment itself is long – one year or more. And, also, there is the long incubation period which makes it a challenge.”

IMG_20190630_191757

Leprosy in Japan

Before the first leprosy prevention law was passed in Japan in 1907, those affected by the disease were often ostracised by their villages forcing them to roam the land, often begging. Five sanatoria were set up across the country to house them in 1909 and these wandering patients began to have a home and a form of leprosy control programme was implemented. However, things really changed in 1931 when a stricter leprosy prevention law was passed on the principles of “purification” of the local areas, where leprosy patients were herded together, arrested and sent to the sanatoria for forced isolation. Although marriages were allowed in these camps, it was common place for men to be forcibly sterilised and women made to have abortions. Despite curative treatment being available since 1943, the prevention law and mandatory isolation of patients with leprosy was only repealed in 1996 following a landmark court case resulting in sufferers being given pecuniary compensation and compensatory access to healthcare and nursing care. Rie has worked in two separate sanatoria over the last four and a half years.

“Each individual – we don’t call them patients but residents – have their own history, their own life story. Many led just so difficult lives. It is not much what I can do to address this, but I wanted to do something. It’s only like last year I was [still] working [at a sanatorium]. I still feel the stigma of the society, the community, and also the resident’s family.

“I’m interested in other diseases as well but I’ve been working in a sanatorium in Japan. What attracted me was to look at the person, and do like a holistic medicine – not just treating the disease but looking at this patient’s life – because it’s a very normal long-term disease. You kind of get attached to the disease because you see the burden that this disease has created on this person.”

“Another work I did while my time at the sanatorium – besides medicine –  is initiating a history preservation project; preserving the memory of these patients so that it will not be forgotten. This included recording and transcribing patient’s stories, collecting and scanning old photos, and securing a place where we can show and store these in appropriate condition.”

For me, this is such an important piece of work that Rie is painstakingly completing. There’s actually a museum just outside of Tokyo that I plan to go to the next time I’m in Japan but it is exactly these individual stories that we need to remember.

“Actually now things in Japan are a lot better, because now they [the patients affected with leprosy] have sued and won against the government – that the government has actually addressed their human rights.”

“We now have very few local Japanese cases but we still do have some. We know that it’s a disease very closely related to poverty and poverty can generate poor nutrition, high population density plus human-to-human contact which the mycobacterium likes.”

Japanese society loves ‘harmony’, to be part of the group, not to stick your head above the parapet. There is a saying in Japanese “the nail that sticks up gets hammered down”.  I can imagine that for leprosy patients anywhere across the world, with the physical disfigurement and uncertain mechanism of transmission, there would be an element of shame and stigma but the social construct of Japan could only make it worse. Relatives of patients could potentially have difficulties securing a place at school, a job or even a marriage partner.

“They needed to change their name, because of the stigma and because they did not want their family to get stigmatized as well. Also, there is a self-stigma – from being stigmatized for such a long time – so it’s stigma that comes from both ways – from the community, society and from the patient’s themselves and their family.”

“They could be diagnosed at an early stage, I mean, childhood. This is quite a young age to me to be disconnected from your family. One patient [I know] was told that ‘you don’t need to come to the school anymore’ but he still went to school the next day. His desk was not there. The teacher did not touch him but just used a broom to usher him out of his classroom. His family wanted to take care of him so his father hid him deeper in the house – nobody could see him for five years but his symptoms got worse and worse because he was just hiding [and not seeking medical help]. And he just got so bad that the family and he decided that they should go to the sanatorium.”

I respect the family for wanting to look after him but then I suppose actually going to a specialist centre to get treatment could have avoided the progression of disease. There’s so many parallels that can be drawn from patient and societal beliefs about HIV. When I volunteered in Uganda, we would have patients who would decline HIV testing because they knew too many friends who died soon after the diagnosis of HIV. However much we tried to educate the patients that, with early treatment, HIV can be a chronic condition rather than a death sentence, we would fail to overcome these deeply ingrained beliefs.

“I think it’s the same with HIV and it’s also interesting because if it [HIV] gets severe you can actually recognize it-  it’s not as much disabling as leprosy but there’s so much stigma for you to deal with.”

During her lecture, Rie had told a story of a woman in the present day who does a two-hour round trip to attend a clinic outside her neighbourhood for treatment. She hasn’t told her husband nor her children. Are these barriers stopping people from presenting? Certainly for the boy who was thrown out of school many years ago, it definitely did. However, this particular chap is now married with children and part of normal society, which Rie thinks has empowered him to speak up for the rights of other leprosy sufferers.

IMG_20190630_191502
Rie on left with the protagonist of her story on the right

“These residents with leprosy – like those with mental illness – their human rights have been pretty much violated. But leprosy patients were able to stand up for themselves because it’s only the physical [not mental] disabilities that they have. So they wanted their dignity and the places [the sanatoria] are now better to be in.”

One of the things that I found interesting from Rie’s talk was that even though the patients were allowed to move freely from these leprosy colonies, many of them chose to stay even when the law was repealed.

“And I guess that makes sense because they [the residents] are much older now I think because, even amongst the residents, some wanted to keep their role in that place [to stay in the sanatoria] and because the place was in a way also protecting them. There was nowhere else to go after they’ve been living in the sanatorium for decades. Some people chose to go back to society – if they were only 50-60 years old when the law was abolished, they went back to society. After 30 years now, they are now turning 70 or 80 and they have difficulties getting into the old people’s homes because there’s a long list of people and then they decide ‘okay, we’ll just come back to the sanatorium’ because then they can get food and house and medical care free. But others choose not to, despite the secured life, because they don’t want to be identified as a former patient.”

So what was Rie’s day-to-day like?

“At the sanatorium, we the doctors check on everyone’s health – managing all of their general health issues – not just leprosy. We were so few but you need to do everything so, you know, general medicine, but of course, most had wounds and in need of complex wound treatment which were so difficult to treat.”

DSC05205

“I mean, the diabetic foot ulcer is also very very difficult to treat because there is both vascular impairment and peripheral neuropathy. This [leprosy] is just peripheral neuropathy which is a special condition – it’s an ulcer purely due to neuropathic deficiency. But you learn that even with just neuropathy, the wound can become so difficult to heal. It’s very complicated.”

“Sometimes, [because most of them are elderly now], we do need to send the patient to the larger hospitals [when they become sick]. We tried our best to have them back in the very last moments but sometimes this was difficult.”

There’s huge debate on what to do with the sanatoria when the number of residents are declining due to old age. Do you shut them down and transfer the rest of the residents to another one?

“You know, sometimes you do get new residents who come to the sanatorium. Also, some residents do think that it’s better they integrate with the community and have non-leprosy patients from outside use the facility but some don’t want to. What’s more, because the facility is under the government, it’s also dependent on how the government decides.”

So I guess there’s no easy answers, much like everything else in the World. Following the interview, Rie and I chat about global health and I ask her what she would want to tell young doctors from all over the world interested in what she does.

IMG_20190630_191821

“Leprosy is a disease that still teaches you many things. Not just the clinical disease but also the social aspects. And for those who want to do global health, my message is that you don’t need to really look just at the outside [of your country]. You also can find things inside your country or you can work to speak out to the world. That’s really important actually really.”

Thank you Rie for sharing your story and your photos and for the amazing work that you do!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s