Interviews

Prof. Sawako Kawamura

Ms. Sawako Kawamura, a public health nurse, is a pioneer of Nanbyo patients’ care.

In the 1960’s, she helped organize a SMON (Subacute myelo-optico neuropathy) patients’ group.

Further, in 1972, she was engaged in making the Nanbyo plan by the Ministry of Health and Welfare.

She made the words “Nanbyo” and “home care” popular in healthcare vernacular.

She has committed herself to the care of Nanbyo patients and the education of nurses for over 50 years.

Ito :

When we traced the origin of Nanbyo movements, we discovered that you did an outstanding job overall.

What made you decide to support Nanbyo patients?

Kawamura :

When I was an assistant of epidemiology at Tokyo University in 1965, I worked in the health consultant room at Nakajima hospital in Toda, Saitama once a week.

I met SMON (Subacute myelo-optico neuropathy) patients there for the first time.

At that time, the disease was called Kushiro or Toda disease and later became known as SMON.

Ito :

SMON was the name associated with the symptoms.
Did you realized that Kushiro and Toda disease had similar symptoms at an early stage?

Kawamura :

Yes, it was reported so by Dr. Seino in Yamagata at the Japanese Society of Internal Medicine department in 1962.

Subsequently later, the SMON association was founded in November 1969.

Following advice by neurological doctors, in addition to SMON, I also supported MG (myasthenia gravis), PD (Parkinson’s disease) and MS (multiple sclerosis) patients to organize patients’ groups.

Ito :

Unfortunately, I remember that many SMON and other Nanbyo patients committed suicide and/or familicide at that time.

What was the morale of the patients’ groups during that period?

Kawamura :

I felt that the patients’ morale was positive under the circumstances because many of the doctors were very warmhearted and kind.

They recognized the serious situation that Hansen’s (leprosy) and Tuberculosis (TB) patients were in as they didn’t have access to specific medicines and were alienated from society.

The doctors showed an unselfish commitment to help many suffering patients.

Most of the doctors survived life and death situations during World War II.

One doctor fought on a battleship, one was the sole survivor out of 10 soldiers in his platoon, another one survived the atom-bomb, while yet another would have died if the war lasted a couple of more days.

Among them, a doctor who wished not to share his survival story, affirmed with resolution that “I’ll do everything for my patients”.

Also, I feel that because of his near-death experience during the war, Dr. Reisaku Kouno at the National Institute of Health, and the leader of the SMON study group at the Ministry of Health and Welfare told me as an exception, “You are welcome to join the SMON conferences anytime”. (nurses were not typically invited)

Dr. Hirotsugu Shiraki, neuropathology doctor and Dean of medicine at Tokyo University, did research on the atomic bomb victims.
He was an army surgeon at the time, so he put himself in the patient’s shoes.
He supported our SMON group and the lawsuit.
We appreciated him so much.

Ito :

At that time, we needed to take a ferry from Hokkaido to Honshu and further on to Tokyo University hospital to see a neurology doctor.

I also had a positive impression of “The Okinaka Internal Medicine Hospital”.

Kawamura :

I heard that Dr. Shigeo Okinaka, a professor of the third internal medicine department of the Tokyo University, laid the foundations for Neurological study and care in Japan.

He worked as a doctor during the week and volunteered to checkup on patients on weekends.
The weekend checkups were organized by patients’ group(s).

As a professor at the medical school of Niigata University, he discovered that the cause of SMON was a side effect of the medication Chinoform.
He was also, the first director of the Tokyo Metropolitan Neurological Hospital.
After this discovery, SMON was eradicated.

In addition, Dr. Kimiyoshi Uonogi worked at the Okinaka Internal Medicine hospital as well.
He created the Tokyo Metropolitan Neurological Hospital’s foundation.
He was a very caring doctor and I remember a particular story.

A young boy had passed away from muscular dystrophy because he couldn’t get emergency treatment due to the lack of beds at the time.
After the boy passed away, Dr. Uonogi visited his home and brought flowers.

I worked with him a lot during that time.

Ito :

By the way, I’d like to ask about Dr. Ichiro Kanazawa who was active in making the Nanbyo Act, but unfortunately passed away a couple of years ago.

Was he a medical student at Tokyo University at the time?

Kawamura :

I’m pretty sure he was, but I didn’t know him very well.

Ito :

Dr. Kanazawa was a neurologist and imperial household doctor.

He was popular among medical students and mentored them to become excellent doctors.

These doctors were also involved in Nanbyo patients’ assessment.

They had a kind of spiritual and social understanding for Nanbyo care.

As well, he was very active and influential regarding social circumstances for Nanbyo patients.

His contributions were important to the early development and success of the Nanbyo policy.

Nurses, health nurses and social workers were also involved in Nanbyo care.

This is my opinion.

Kawamura :

During the SMON outbreak, at-home nursing care wasn’t available.
Public health care nurses took care of the patients at their homes.

After WWII, for about 10 years, doctors were at a premium, therefore public nurses cared for patients in their absence.

Ito :

I remember that.

In Hokkaido, we called them “Kaitaku Hokenfu” (Pioneer public health nurses).

They visited patients’ houses by horse and buggy or motorcycles which were strange to them.

Kawamura :

I lived in a village about an hour from Tokyo station and we didn’t have a doctor.

When a patient spat blood or had a high fever, they asked a public health nurse to come and care for them.

Ito :

Did the nurses think that the patients were suffering from tuberculosis and feared for their personal well-being?

Kawamura :

I think so, but most of them believed in their nursing credo.

We knew everyone in the village, so we had to go when we were asked.

Ito :

Public health nurses had a great presence in rural communities at the time.

How did SMON patients do when you organized a SMON patients’ group?

Kawamura :

They didn’t communicate with each other very much because they were alienated from society if they said they had SMON.

As the chief editor, I published a newsletter titled, “SMON no Hiroba” (SMON square).

The newsletter was an integral part of the group, so I solicited some patients to join.

Sometimes they found out that they were neighbours.

Ito :

You named the newsletter “SMON no Hiroba”.

Was there any resistance from the patients or prejudice from society?

Kawamura :

Yes, I named it myself.

I was so busy and couldn’t sleep well because I was raising my children then.

So, I actually didn’t have time to worry about that.

Many patients contacted me by phone and consequently my monthly bill was really expensive, more than 30,000 yen which was more than the starting salary for college graduates.

With a smile, my family said, “You are doing too much”.

Ito :

It was very difficult for us to meet as you were so busy going to many places.

You were a key person of the SMON patients’ group initial members.

You also provided, “actual condition” surveys of the patients.

In addition, you were the Secretariat of “Zenkoku Nanbyoren”.

Kawamura :

Yes, but it was all for a short time.

Ito :

You supported the patients when they made their groups because it was difficult for them.

Those groups became popular and triggered a great influence in the society.

Kawamura :

Thank you for saying so.

I was usually criticized when I tried something new.

Ito :

As I read the index of the first issue of “SMON no Hiroba”, I noticed the famous people, such as Prof. Yasuo Toyokura (Tokyo University), Prof. Akihiro Igata (Tokyo University), and Mr. Yoshimitsu Sagara (SMON group’s representative) among others.

Furthermore, in my opinion, “the actual condition” survey of the SMON patients played an important part in the society.

When you did this large-scale survey, did the mass media pay attention?

Kawamura :

I did the epidemiological survey because I needed baseline data.

Mass media, the national & local governments interviewed me to come and explain the report.

Ito :

I remember it was the first survey by a patients’ group.

Kawamura :

Yes, it was.

Ito :

I was impressed. It was before the national research groups were made.

I heard that many people provided financial support.

Was it difficult to do research without personal donations at that time?

Kawamura :

I can tell you now that nobody paid my telephone bills and traveling expenses.

I was always on the phone, someone said to me, “Whenever I call you, you never answer.”

Fortunately, my mother helped me a lot taking care of my children.

Ito :

I read your book and you wrote that your mother had tuberculosis.

Was it a hardship?

Kawamura :

Yes, it was just after World War II and tuberculosis was a fatal disease.

I didn’t have friends when I was an elementary school student.

I was bullied and I remember a classmate saying “eat crayons” or something like that so I felt alienated.

Ito :

It was said that tuberculosis and Nanbyo was a field of public health.

Didn’t the government policy support it medically?

Kawamura :

I thought differently.

Tuberculosis is an infectious disease, so infectious measures are a public health issue.

The medical care development depends on the progress of clinical medicine.

We now have medical care for tuberculosis and the infectious measures, consequently the infection rate has almost been eliminated.

Ito :

You founded the “Japan Muscular Dystrophy Association” and the “Zen-Nanren”.

Small patients’ groups made up a bigger group, within each local government.

This kind of patients’ movement gathered lots of momentum at the time.

Later in 1972, the Nanbyo plan by the Ministry of Health and Welfare was made public.

Medical subsidies and research for Nanbyo patients began and a lot of patients’ groups requested to be chosen and included in this system.

You supported them and made an educational 16 mm film titled “Living with Nanbyo”.

A lot of health centers referred to and/or bought the film.

This must have been a very busy time for you.

Kawamura :

Actually, I was busier before that when “SMON patients’ group” was founded as many details had to be dealt with in succession.

After that, I could control my schedule better.

Ito :

Fuchu hospital created a neurological department, and it then became Tokyo Metropolitan Neurological Hospital.

The Ministry of Health, Labour and Welfare set the budget for the research groups.

I assume that initially the development of the patients’ groups was more onerous then as compared to now.

Kawamura :

Yes.

Also, before public health centers made a budget, we had to pay our own transportation fees.

It was costly.

Ito :

The Tokyo government provided financial aid for patients.
On the other hand, local governments couldn’t afford consulting fees.

The National Government initially identified specific diseases as Nanbyo and Tokyo consequently added more diseases individually.

Other local governments and Nanbyo patients also wanted to increase the diseases to be included.

What do you remember the most during that time?

Kawamura :

Being too busy to sleep.

Ito :

You also wrote a lot of books.

When the government started the Nanbyo support in 1972, as well as being available for interviews, you provided suggestions and reports.

What was the government’s attitude regarding your efforts?

Did they really want to resolve these issues or they felt pressured due to public opinion?

Kawamura :

The government needed a basis in order to respond.

The public opinion said that SMON was an infectious disease and that patients should be isolated.

It was very beneficial when the government developed research groups and added social welfare and nursing specialists.

At the time, 16 mm movies were the best way to show how serious the patients’ daily lives were so as a nursing researcher I made a movie about their plight.

Many people were interested and invited me to speak about the movie.

Some important government officers gathered and watched it on their own time.

I was worried about being chastised, criticized or litigated against.

One of the government officers said that his parent had died from SMON and he was brought to tears.

The experience left an indelible impression on him.

I think these people supported us from a distance.

An important doctor said that the Nanbyo problem inspired people’s conscience.

Ito :

I believe the main Nanbyo supporters were the public health nurses at that time.

They provided a great service by visiting patients’ at home and also consulting with them.

Among the public officers, the public health nurses could support outreach services according to their care plans.

Kawamura :

Yes, they visited and cared for tuberculosis sufferers which was classified as Nanbyo.

Ito :

So later on, their experience was beneficial at the onset of Nanbyo care.

They helped patients from feeling and being isolated in society.

If they found a child sufferer, they asked the board of education to help him/her go to school.

Also, they asked local residents to help the mothers of such children.

Furthermore, they became involved with local societies.

I appreciated that the public health nurses did many ancillary duties outside of their core responsibilities.

They involved other professions, hospital and welfare workers.

At that time, cities as well as prefectures made Nanbyo regulations.

The public health nurses led this process.

They made a plan and convinced the patients to say, “We need this regulation”.

Kawamura :

The patients were isolated, so we coordinated a place to communicate.

We asked the local government for help.

Ito :

The public health nurses taught the patients how to petition the local governments or assemblies.

As they didn’t fully understand the Nanbyo problem, the local governments and/or assemblies needed help from the public health nurses when responding to patients in writing.

Kawamura :

I’m not sure about that, but the support for Nanbyo patients was by non-partisan members.

Ito :

From 1973 to the 1980’s, Nanbyo support expanded rapidly in local areas.

Kawamura :

SMON (Subacute myelo-optico neuropathy), MG (Myasthenia Gravis) and PD (Parkinson’s Disease) groups were formed, and these diseases were chosen to be subsidized.

Due to the prevalence of PD, people realized that in reality, Nanbyo diseases were closer to them then they thought and consequently a heightened level of support began.

Ito :

The public health nurses started rehabilitation and/or musical therapy for PD patients.

Kawamura :

Yes, doctors made great efforts and discovered new treatments.

They said, “We empathize with the patients, but medical care has limitations”.

Ito :

As well as public health nurses, the medical social workers were being watched with interest by society in general.

Patients’ groups asked hospitals to hire medical social workers.

There weren’t many Physical and Occupational therapists at the time.

Support teams consisted of public health nurses, doctors, nurses and medical social workers.

How was it in Tokyo?

Kawamura :

A few distinguished doctors felt that since treatments or cures could be developed for other diseases, supporting Nanbyo was meaningless.

When the Fuchu hospital created a neurological department, Dr. Hirotsugu Shiraki (Tokyo University) said that other countries didn’t think that way, we therefore need rehabilitation workers.
A rehabilitation facility was created.

Ito :

I went to Fuchu hospital to study around that time and I could tell the environment there was different than the other local areas around Japan.

The patients became interested in rehabilitation and realized that support was very important.

Rehabilitation might not cure the disease, but it reduces the patients’ pain and improves their QOL (quality-of-life).

This thought substantially changed the medical treatment.

Kawamura :

Thank you for saying so.

Dr. Masanori Uono (1923-2015) of Fuchu Hospital and Dr. Hirotsugu Shiraki (1917-2004) of Tokyo University, would have been very glad to hear that.

Ito :

Our patients’ groups referenced your accomplishments and developed similar strategies.

They are now commonplace.

Kawamura :

Yes.

Ito :

I believe, in addition, treatment for neurological diseases became popular and the autoimmune diseases such as SLE (systemic lupus erythematosus) became part of the medical subsidy.

Kawamura :

No, SLE was included in the original Nanbyo subsidy.

After which, other autoimmune diseases were added.

Ito :

As there were not many autoimmune disease patients at the time they were not targeted for rehabilitation.

The main target was neurological patients in local areas.

Kawamura :

Yes.

The neurological department didn’t have a long history because it only became independent in the 1970’s.

As there was a dearth of neurological doctors, many patients weren’t diagnosed quickly.

Ito :

Now, neurological doctors utilize MRI (Magnetic Resonance Imaging) as an accurate diagnostic tool.

At the time, the popular tools used to diagnose neurological conditions were a brush, needle and a hammer.

Blood work for autoimmune, digestive and blood diseases was also used at the time.

Technology has advanced many diagnostic procedures over time.

Kawamura :

As autoimmune disease patients recover, their mobility improves.
However, it is not as likely for neurological disease sufferers.

Ito :

Yes, usually they get progressively worse.

Kawamura :

Yes, so their situation is serious.

Ito :

At this time, we are concerned about the “Nanbyo Act” umbrella as many lesser conditions are not included anymore.

If a Nanbyo patient becomes outside the “umbrella coverage”, they cease to be supported by the act or the medical and/or welfare support system.

I don’t think it’s fair.

What’s your opinion?

Kawamura :

I agree with you.

The “program” is effective at controlling the escalation of patients’ physical conditions.

It’s interesting to note that years ago some people said that the Nanbyo program wasn’t needed from an emotional and financial perspective.

Before the end of the “bubble economy”, people were more empathetic and supportive of those that were suffering, but after that time the situation has changed.

And since then, the elderly population has increased quantifiably requiring more care.

The current Japanese economy has stagnated, and in some sectors decreased.

People are demanding that medical fees and research budgets be reduced.

Ito :

Thanks to you, Nanbyo supporters have increased and the overall acceptance is more popular than ever.

However, in turn, national and local governments’ finances have worsened.

The Nanbyo budget continues to oscillate instead of stabilizing.

Kawamura :

You may be right however, financial support for medical care for the elderly is also becoming critical.

Ito :

As technology improves, we are hoping to benefit from new medicines and treatments.

However, the expenditure is high and could make the situation more difficult for Nanbyo patients.

Kawamura :

Yes, it’s a bit of a dilemma.

The Nanbyo patients’ movement may have to re-think how to advance the program.

For example, Parkinson’s Disease currently covered under the program, could be excluded as doctors have noted an increase in cases amongst the elderly which might designate it as non Nanbyo.

Ito :

In this case, we can’t control aging, but we can reduce the symptoms of PD, however the cost increases could cause financial concerns for the government.

Kawamura :

It’s another important problem.

We have to analyze it from different points-of-view and find a new direction.

Ito :

Some people believe that medical economics is needed for Nanbyo people.

But I’m not aware of any economic research in this area.

What do you think about this?

Kawamura :

I think the main issue of medical economists is the national medical capital requirement.

The economists are focused on the expenditure for medicine for the elderly.

This expense represents the largest proportion of medical finance.

The Nanbyo economic research group will not be made spontaneously.

Patients’ groups have to develop a plan to research this problem as was done during the genesis of the movement.

I recall that Mr. Sagara, SMON (Subacute myelo-optico neuropathy) patients’ group’s representative made a great effort along with doctors and media which advanced Nanbyo research and life support.

[Questions & Answers]

Ito :

You wrote a lot of books.

Could you recommend some of them for patients’ groups and Nanbyo people?

Kawamura :

It’s difficult to recommend what to read as everyone has their particular interest.

At the time, it was easy for me as I was very motivated to write about problems that I encountered and the solutions.

I suggest that people refer to what interests them the most from my publications.

Ito :

I don’t think it was easy at all.

I feel that the perspectives published in your books began to change after the millennium (2000).

Kawamura :

Nanbyo care and home-visiting nursing are my base.

However now I’m an educator.

Recently, I was solicited to write about the history of the Nanbyo movement.

So, the contents of my writing have changed somewhat.

Ito :

When and why did you start using the words “home care（在宅ケア）”?

Kawamura :

When I published a book from “Igaku-Shoin” in 1978, I discussed with the editors and my boss, Dr. Uono, and coined the phrase.

In 1974, we started a new system in Fuchu hospital and called it “visiting care”（巡回診療）.

But we realized that there was a program using the same name with some differences.

We created a specialists’ team including home doctors, nurses, health nurses, rehabilitation staff, including physical therapists, occupational therapists, and later, speech therapists, medical social workers and psychotherapists and named it “home-visiting care team”.

At the time, medical care was only available at hospitals.

A patient on a ventilator, a tracheal cannula, urethral tube or a nasogastric tube couldn’t live at home.

Clinic doctors and others volunteered to help those patients.

It was like a “big support group” with many specialists.

We chose the words “home care”, and it meant all supporters’ care.

Ito :

At the time, home care wasn’t popular in local areas.

At best, doctors made house calls periodically.

“Visiting care” wasn’t adequate.

Kawamura :

Yes, that’s correct.

House calls are for emergencies only.

For example, if someone suddenly has an accident or other medical complications.

We therefore started “home care” for palliative care purposes not only for emergencies.

“House calls” and “home care” are completely different.

Ito :

I lived in an urban area in Hokkaido, so I was envious of the “Visiting Care” and “Home Care” systems.

I thought they were only feasible in Tokyo.

But now people in many areas can benefit from these systems.

Kawamura :

In the late 90’s, the medical payment system changed and included the classification “Home Medical Care” in addition to “Outpatient Care” and “Hospitalized Care”.

Ito :

We were impressed by your film, advanced research and the name “Home Care” so we tried to replicate your success in local areas.

Our initiative improved the medical care level in Japan.

For example, the knowledge regarding the use of ventilators was useful.

We shouldn’t put emphasis on the budget for Nanbyo as many medical techniques have been improved through Nanbyo R&D (research and development).

All patients deserve to be treated the best available standard at the time.

It will make Japanese society better.

Nowadays, people refer to digital sources for their information and films are not utilized much.

What are your thoughts regarding this?

Kawamura :

Yes, we have many media outlets available.

However, at the time, films were one of the only ways to convey our information creatively.

The films also confirmed the use of specific techniques by well-known doctors.

Consequently, this knowledge and the techniques spread around Japan.

But now social media is faster and have more influence than even newspapers.

Ito :

Now there is an abundance of information that at times is hard to discern what is best.

At the time, in Nagoya, did people treat Nanbyo patients mainly at Nagoya University Hospital?

Kawamura :

Yes, Dr. Itsuro Sobue made a substantial effort in the neurological department there.

Ito :

There are a lot of good Nanbyo support systems in Nagoya.

For example, the Nagoya Medical Association manages the Nanbyo counseling center.

Mr. Ushida (Aichi Nanbyo Association) :

I’m a member of a patients’ group in Nagoya.

I’d like to ask you what patients’ groups are?

Kawamura :

I will answer your question from patients’ groups side.

Because I was the secretary general when the SMON association was founded in 1969.

Ushida :

How did patients and medical specialists collaborate?

Kawamura :

As far as SMON was concerned, I published a newsletter and circulated it to the patients.

They misunderstood that I was also a SMON patient, so I was expected to act like a patient, but I wasn’t.

I realized that if the patients don’t communicate their needs, then supporters can’t help them.

So, it is really important that patients say what they want.

I’ll give you an example about the “Home Care” for Nanbyo people.

Please think about Mr. E in Tokyo who is on a ventilator.

He wants to live at home on a ventilator and we can support him.

But, if Mr. M also on a ventilator, lives in a rural area and wants to live at home we can’t support him from Tokyo.

Therefore, we needed a national support system.

Later, as a nurse, I began to work as a service provider.

We were in demand by many Nanbyo patients.

Some people got angry because we couldn’t meet all their needs quickly.

Basically, our “Home Care” was against the system at the time.

The working conditions and payment plan was not adequate.

As an example, I treated 80 patients myself.

I couldn’t support all their needs.

More patients should have lobbied the government for support.

I think it’s a very important role of patients’ groups.

In addition to peer support, medical care providers offer another point of view other than only a financial perspective.

For example, if patients go to a public office to apply for medical welfare, a patients’ group member accompanies them to describe their condition and situation.

If the medical system isn’t supportive enough then patients’ groups should actively lobby the government to improve the situation.

When a doctor explains the seriousness of their disease and that there is no treatment currently also that their condition will deteriorate soon, I’d like patients’ group members to tell the patients that they have peer members to be with them and share their grief.

I think it’s the core commitment of peer support to empathize and sympathize with each other.

Personally, I also believe that spiritual support is very important.

Ito :

I think patients’ groups supply that role.

Ms. Kubota, as a medical social worker, what are your opinions regarding this topic?

Kubota :

Yes, thank you, I used to care for Nanbyo patients, so your story is familiar for me.

In Hokkaido, hepatitis was categorized as Nanbyo, so a lot of patients called us for advice.

It was so difficult to diagnose specific diseases, so unfortunately, some patients had multiple diagnoses, therefore, many patients couldn’t trust their doctors.

The financial support and welfare system are so complicated that even medical social workers can’t understand it.

Ito :

According to people’s needs, many support systems were made, but they became too complex for practical use.

Kawamura :

Yes, we must maximize all programs to cover the diversity of needs.

Ito :

Yes, and a substantial amount of paperwork is also required.

Kubota :

We sometimes overstate their symptoms in order to receive more financial support for wheelchairs etc. and conversely paint a rosier picture also to benefit a patients’ position or situation.

It’s inconsistent.

Ito :

Ms. Kawamura, you talked about your memories from the 70’s, I’d like to know more.

At the time, SMON (Subacute myelo-optico neuropathy) was impactful on the Nanbyo research and the subsidy program in Japan.

Later when the cause of SMON was discovered to be an intestinal medicine (Clioquinol) I was not in Tokyo, so I couldn’t ascertain the patients’ group members’ reaction.

Kawamura :

I thought they felt relieved.

As you know, the Japan SMON organization was founded in November 1969 and the cause was discovered August 1970.

Specifically, the newly formed Japan SMON organization lobbied the government to support the challenge to find a cause. A research group was up and running by April 1970, leading to the successful discovery of the cause in August.
Consequently, by October, no new patients were identified.

Ito :

It was a really speedy conclusion to such an important development.

I heard that the success of SMON’s research group prompted the government to support other Nanbyo research groups.

Is this true?

Kawamura :

Possibly!

Ito :

At the time, the government awarded support to four additional diseases.

Was the determination for support the same as that granted for the SMON research?

Kawamura :

I’m not sure if you’re accurate but SMON had a research reward program for sure.

The government needed a strong rationale in support of granting Nanbyo sufferers, medical subsidies.

I heard the following rationale.

• Nanbyo causes are unknown.
• Most effective medications were not determined.
• Nanbyo patients to be available for clinical research.
• The grant also financially rewards the patients for their devotion and sacrifice.

Ito :

I understand.

After, SMON discovered the drug poisoning, how did the program evolve into the Nanbyo program?

Kawamura :

As mentioned, the SMON research group started in April 1970 but they didn’t have a research subsidy.

In August 1970, Dr. Tadao Tsubaki (Niigata University School of Medicine) advised that the cause of SMON was Clioquinol.

In September, the committee of medicine decided to prohibit the use of Clioquinol.

As a result, the newly affected patients decreased markedly to about 10 people throughout Japan.

Later, the epidemiological evidence supported the drug poisoning cause, attributed to the drug Clioquinol.

Consequently, a law was enacted for drug poisoning and a relieve system for drug poisoning sufferers.

It was decided to admit SMON to the system, but the SMON organization refused.

They thought it was unfair that only SMON sufferers received relief.

They believed, as there were many other Nanbyo sufferers, the system should be equitable.

Their decision might seem pretentious, but they really considered it.

Ito :

In brief, it was the SMON organization’s choice that they didn’t want to be compensated by the drug poisoning relieve system.

Kawamura :

Yes, that’s accurate.

Also on May 25, 1972, they launched a lawsuit.

The next day, I went to Okayama to talk about the lawsuit.

Just after I returned home, many newspaper reporters tried to contact me.

They told me that the Ministry of Health, Labour and Welfare decided to make a Nanbyo project.
I realized that the lawsuit had a great impact on their decision.

Ito :

As you worked for a large public hospital, was there any animosity regarding the lawsuit’s decision?

Kawamura :

I was an assistant at Tokyo University Medical School at the time.

My boss, Dr. Shunichi Yamamoto was really supportive, he allowed me to continue working there.

But consequently, I quit as some people blamed me for supporting the lawsuit.

Ito :

I’m sorry to hear that.

Kawamura :

I felt like my work in this field was over, but due to support by other patients, I got a job at the newly opened “Fuchu Neurological Hospital” in Tokyo.

Retrospectively, the SMON lawsuit was really important for the Nanbyo policy moving forward.

If SMON sufferers agreed that the lawsuit was only for them, the Nanbyo policy wouldn’t have been established.

At the time, we met with Dr. Hirotsugu Shiraki (The Medical School of Tokyo University) and discussed many related topics.

Dr. Shiraki said that we should treat all Nanbyo patients.

Mr. Saemon Ishikawa (Tokyo Muscular Atrophy Association) was also part of the discussion and related the Nanbyo sufferers’ point of view.

At the time, ALS sufferers only survived for a couple of years, and it was difficult for them to express their concerns to the society.

We worked diligently to try and accommodate their needs.

Ito :

Do you have any advice for us?

Kawamura :

No, nothing specific. Please do what you think is best.

Nagamori :

You mentioned that you were in discussions regarding the Nanbyo Act implementation for almost a year in 1972 before the policy was established.

Who was in favor and who was against the act?

Kawamura :

The government was in favor of the “Nanbyo Act” as they needed a law to work for the people.

But I think the “Nanbyo policy” was better because of the situation at the time.

Ito :

The Ministry of Health, Labour and Welfare said that the “Nanbyo policy” is rare, because even though it isn’t law, it has had a budget and many research groups for over 40 years.

Kawamura :

This was because of the lawsuit and the patients’ efforts.

The lawsuit has ended, and many of the SMON sufferers are still alive, and the compensation hasn’t expired.

Ito :

It is a complicated agreement.

Kawamura :

Yes, I understand the Nanbyo policy had a lot of problems.

The subsidy was initially to support patients but included medical research.

The Nanbyo definition included everyday life and the challenges of patients.

But I think the life challenges cannot be separated from the Nanbyo definition.

From that time, the SMON associates widely considered the Nanbyo problems.

Ito :

Thank you very much for today.