How an Indian doctor beat the scourge of leprosy

A team leader of the World Health Organisation's Global Leprosy Programme from March 2005 to November 2009, Dr Pannikar worked with WHO on leprosy-related programmes for 20 years.

Up for retirement next month, Dr Pannikar now divides his time between a small village in Karnataka near Hosur, and New Delhi.

Dr Pannikar spoke exclusively to Rediff.com's Shobha Warrier.

You wanted to be a space scientist or a physicist, but went on to study medicine. Why?

In my time, medicine was the most sought after course. My parents wanted me to study medicine and become a doctor. They said if you can't get into medicine, do whatever you want.

I got admission to many medical colleges, but joined the Armed Forces Medical College in Pune. My parents were not very well off, so I chose AFMC as it offered free education for all the five years.

As my father was in the army and had to move to many locations, we were stationed at Pune. So I did my schooling and college in Pune as well.

In the final year, I was diagnosed with a pulmonary problem, so I was not allowed to work in the army. So I joined AFMC as a lecturer for undergraduates in anatomy.

How did you move from being a lecturer at AFMC to treating leprosy patients?

In 1972, my professor at AFMC asked me to meet the chief trustee of an NGO that was running the Dr Bandorawalla Leprosy Hospital in Pune. He desperately needed a doctor to take care of the 600-odd leprosy patients at the hospital.

And here's an aside -- patients murdered the earlier doctor apparently because he was unkind!

And you were not frightened?

No, I honestly wasn't. I just wanted to do something different. I had visited the hospital as a student, and it had left an impression on my mind. I don't know what it was.

That's why I decided to take it up when my professor asked me to. Sure, my family was worried in the beginning.

Were the patients hostile?

No, they were not and basically, they just wanted someone to take care of them. Within a few minutes of meeting them, they accepted me.

There were about 600 patients, some there throughout their life; some for a short duration, some very old and some, children.

At the time, the only treatment available was Dapsone. All the patients queued up in the morning before food and the tablet was put in their mouth. Thereafter, breakfast was served.

If any one of them did not queue up for the tablet, they were not served medicine that day. I thought it was like a prison.

I decided to make their lives a little bit better. I wanted the administration to change their attitude to the patients; I wanted them to respect the patients and I did not want them treated so shabbily.

Their families had abandoned most of the patients and post-treatment they had nowhere to go. Children with leprosy were abandoned at bus stands, streets, just because they had the disease.

Before I took over, they would go begging once a week. I stopped it and told the nurses to give them the medication after food.

So how much did their lives change?

Not much actually. I learnt a lot about the disease and the patients. I started researching on new treatment as Dapsone was not working.

I went to many conferences with my papers and it was at one such that I met Dr Ernest Fritschi. He was the director of the Karigari Leprosy Research and Training Centre in Vellore.

He asked me to join his hospital. He said I would have the facilities to research the disease. I took up the offer.

Were your patients happy for you?

They had got used to having me around for four years. I used to go over to their place with my daughter whenever I went for a walk in the evening. Of course, they came over too. Some days when someone was sick, I was there the whole day.

When I was leaving, all of them came and lay down on the railway line. They said they would not allow the train to go.

I was really touched. I couldn't leave that day.

Later, they submitted a petition to the collector and the chief minister to force me to stay back.

After a week, I vanished without telling anyone. I thought I should concentrate on research as there were others to take care of the patients. At the time, what was primarily needed was research on the disease.

I joined the Karigiri Hospital in 1976 and worked there for 12 years. Patients came all the way from Pune.

It was a huge hospital and one of the best research centres possibly in the world then. There were many doctors from all over the world working there.

Were you doing research under Dr Fritschi?

No. Dr Fritschi being a surgeon wanted me to be a surgeon as well. He took me under his wing and began training me. I had no choice at the time.

But while I was training to be a surgeon, I did publish papers collaborating with other departments.

When did you join the World Health Organisation?

In 1979-1980, WHO was looking for an area for the new multi-drug therapy Dapsone, Rifampicin, Clofazamine trials for leprosy. I had already started the trials and WHO heard about it.

WHO was planning a 10-year trial and my director at the Karigiri hospital said WHO wanted a team to head the trial and I took it up.

I became the team leader and moved out of surgery into medicine. I became an independent project manager for the WHO trials in Karigiri.

Was this the first time that multi-drug therapy was tested in India?

The three-drug combination was never tested anywhere in the world. The 10-year trial went on for 15 years.

The trial was done in the Gudiyatham taluka in the North Arcot district where there was a population of half a million people.

The trial was done on 1,067 patients. This was in 1979. The trial finished only in 1995.

From the first year, I began publishing the preliminary results as the whole world was eager to know how the drugs fared. Patients were very surprised at the treatment as doctors visited their homes to monitor on a day-to-day basis.

Any trial will succeed only if patients take their medicine and sure enough, they began to feel better in the first year itself.

What were the momentous events that marked the years of trial?

One of the things we were sure about while selecting patients for trial was that pregnant women should not take the leprosy medication. But a patient turned out to be pregnant -- she didn't know she was expecting when she started the treatment.

When I came to know about it, I informed WHO, but they had no idea what to do and asked me to decide.

Nobody knew what would happen if a pregnant lady underwent the treatment.

I spoke to the patient about the possible repercussions, but she refused to go in for an abortion and continued with the treatment.

I kept a close watch on her and quite a few of us were around her house to collect the placenta for testing as she refused to have her delivery in a hospital. I checked the child after the delivery and it was normal.

After that, 20 children were born to women who were under treatment. That was how WHO came to the conclusion that the medicine had no adverse effect on pregnancy.

So far, we have treated 16 million patients all over the world and I am sure we have treated 4 to 5 million women, many of who may have been pregnant. But there were no adverse reactions.

But those were initial days and new experiences.

Leprosy being a slow disease, we had to wait for 10 years to see whether the treatment works.

What were those 15 years like?

I kept a watch on the trial for 15 years, but I worked in the trial only for 10 years. By then, the trial was almost over and the patients were on follow up treatment.

In 1990, in my 10th year with WHO, the director asked me to go to Geneva. They wanted to start trials in other countries too. They made me the chief of the chemotherapy trials of WHO for leprosy.

By then, next generation drugs had also arrived. I had selected centres in India, Vietnam, Myanmar, Brazil, Mali, Kenya, Ethiopia, China and the Philippines. My job was to visit these countries and monitor the trials.

We found that the relapse rate was less than 1 in 1,000 in 10 years. So by 1993, we reduced the treatment duration from five years to two years.

In 1997, after another study, I decided that a year's treatment was enough.

Treating leprosy is not easy; it's neither a child's disease or a geriatric one.

It's a disease of young adults -- between ages 20 and 40. That is the prime of your life.

I would not have been able to take the decisions on the treatment if I had not joined WHO. Whatever we wrote for WHO became the rule for the treatment of leprosy.

I worked for 20 years with WHO and headed the leprosy research programme for them. I guided research not only for chemotherapy, but immunology and new genetics.

We also funded the genome project because many germs do not have the full genome map and leprosy is one of the genomes we mapped.

Now we are comparing the genome with the human genome, the TB genome, etc, which will help us develop new drugs and new vaccines.

My years with WHO were very positive. I would say I didn't work for WHO, I worked for leprosy. Only my office was at WHO.

Have the number of leprosy patients come down in the last 20 years?

When I joined WHO, our estimate was that there were between 11 and 12 million patients in the world -- India alone had four million. That was in 1985.

Today, there are only 250,000 patients in the world, of which India has 125,000.

Yes, half the world's leprosy patients are in India and the other half in the rest of the world.

Brazil comes next with about 40,000 people. China has about 2,000 patients.

You were to retire in November 2009 from WHO.

I did retire, but they called me back. So, I am retiring again this November.

I am now working on the involvement of patients in the decision-making process in the treatment of leprosy.

It is very important for all the diseases, but more so for leprosy.

You said India has the largest number of leprosy patients in the world. Has it anything to do with poverty?

All communicable diseases have something to do with poverty.

Poverty leads to malnutrition, hygiene problems, overcrowding, close contact, etc. All these lead to contagious diseases.

Leprosy is a disease of poverty, as is TB.

Any post-retirement plans?

I have in effect retired and built a house that is natural in a small village called Thenkanikottai (in Karnataka) near Hosur.

I use only solar power and get water from wells. We (Dr Pannikar and his wife) have a lot of pets and a big garden.

I go to a Mission Hospital once a week and meet patients for free. We also do free health camps.

I go to some other hospitals too, but no paid work for me hereafter.

Till November, my weekdays are with WHO in Delhi and weekends in my village.

You have won the International Gandhi Award...

They say it is for the work I have done in the field of leprosy.

I think it is because I involve all the NGOs in the world to make sure leprosy patients are not marginalised and they find a place in mainstream society.

I want them to get the benefits other disabled people get.

When I got $1 million from a donor, I used that money to start around 20 organisations in many countries.

I also gave away the Gandhi Award money for the work on leprosy patients.

What more should be done for leprosy?

A lot more especially because there is an inherent stigma. They are not acknowledged as human beings even today and leprosy is not included in any of the government programmes.

Even today, in Tamil Nadu, leprosy colonies are under the IG (Inspector General) of Prisons -- not medical department, but under the Prison Act!

The rehabilitation homes in Tamil Nadu are called Beggar Homes.

Both beggars and leprosy patients are put in the same home and they are not allowed to go out.

That is why beggars run away from these homes. It is like a prison.

Do you think leprosy can be eradicated?

Eradication world over can be possible, but not now.

Scandinavian countries have eradicated the disease mainly because of the socio-economic situation.

Two things must happen for eradication -- socio-economic development and vaccination.

During my 20-year tenure with WHO, we tried four to five vaccines, but they didn't work.

Vaccination is a must if you need to eradicate the disease.

Is leprosy still a high priority for WHO?

No, it isn't, primarily because it is a low intensity disease. 250,000 cases in the world is nothing compared to Malaria, HIV, etc.

There is an imbalance in the way WHO thinks as well.

Diseases that affect the rich are given priority. If five people die of H1N1 in the USA, it's an emergency.

Every day millions of children die of diarrhoea in Africa, but it's not high priority.

Every day 100,000 children die of TB in Africa, but it's not a priority.

So many children die before they are a year old, but nobody is bothered.

Unfortunately, money, which should go to the poor is diverted for the rich man's disease.

Photograph: Sreeram Selvaraj