In Sickness and In Health : India’s Public Health Story

Note: This episode is produced for the ear and designed to be heard, not read. Readers are encouraged to listen to the show to get the full experience. The transcripts are meant as support documents and may not include inclusions from the day of recording and may contain errors. The audio version is the final version of the show.  

Host

Welcome to Grassroots Nation, a podcast from Rohini Nilekani Philanthropies, a show in which we dive deep into the life, work, and guiding philosophies of some of our country’s greatest leaders of social change.

This is a series of short episodes that shine a spotlight on themes that arose from the conversations with the guests of Grassroots Nation. These episodes showcase what shaped their thinking, their relationships, and how small acts form the basis of collective action. 

India is a country in which many stages of growth and development are occuring simultaneously–we live in a time where our country is making huge strides in technology and yet we are still working to solve deeply entrenched issues of social inequality. And while our challenges are immense, they are not of the magnitude we faced just a few decades ago. For instance, many will not remember the enormous advances we made in public health. In 1980, the lifespan of the average Indian was 52. Today it is 72. The ingenuity, presence of mind and advocacy that India’s public health workers brought to small and remote villages and poor government hospitals is where these huge impacts were made. In the following clips you will hear from KT Sudarshan, Armida Fernandes and Abhay Bang about the communities and cases that inspired their groundbreaking work.

Dr Sudarshan

Yeah, the leprosy, which was not there in amongst the tribals. We started finding recent infections in the tribal area. Then we discovered that Yellandur and Kollegal at the foothills of BR Hills was hyper endemic for leprosy.

So we wanted to work with those rural poor also and I was also inspired by Buddha. That’s where the Karuna came. So Karuna Trust was found with the idea of eliminating leprosy in Yellandur taluk. I went to CMC Vellore, Karigiri it’s called, got trained myself in leprosy work and came back and started the leprosy. 

[AUDIO OF LEPROSY PSA] 

So we eliminated leprosy that was the first project of the Karuna Trust. Then we found similarly we should do for tuberculosis and we started tuberculosis control program and we evolved nowadays called as DOTS program. We were doing similar without naming it DOTS program ​​we were doing it. But we didn’t publish it. But the World Bank got the credit for DOTS program WHO and program. I also found that we are doing all this work.

And the government is also has its own infrastructure and they are spending and all our good results are shown by them as their achievement. So I met the health secretary and said why don’t we partner with each other. So wherever you are unable to deliver services so we will do the work for you and you pay the this thing. Otherwise I have to rise my own dona- beg money and do it and duplicating things which you are doing and your people will lazy around.

So finally it was accepted and first time a Primary Health center was given under public partnership, the Gumballi PHC. And we started with that and the health secretary at that time said I have to convince our finance department the only way they listen to a new project is by telling them that there is a saving to the government.

So he said we will pay only 75% of what we are spending on that Primary Health care for 30,000 population. I agreed on that. It was difficult for us to rise the 25%, but we took up that partnership, let us make a beginning. That’s how the partnership started. And later on we could negotiate for 90%. Most of the states now give 90% when we add 10%, but in Karnataka now they are giving 100%, but we add new innovations and all of that is through our own funds.

That’s how the public private partnership started. So started with two Primary Health centers. Now we manage 70 Primary Health centers in seven different states. Started in Karnataka, then scaled up to Orissa, Arunachal Pradesh, Meghalaya, Manipur and now recently Nagaland and Assam. And last has been in Assam that are also my favorite to reach out to the island tribes there. We have a boat clinic where we reach out to the tribal people there. And provide them Primary Health care to those people.

Dr Armida Fernandez

You know what, I came to Bombay to do paediatrics but in Bombay, that’s where I met my wonderful husband Rui. And when we decided to get married and we were still deciding to get married, I told him, “See, I want to work in the rural sector.” And he said, “Rural sector? Whatever for?” I said, “The really poor people stay there and that’s where I’d like to work.” So the answer Rui gave me really made me think, he said, “Why do you have to go out to look at poor? Look at Mumbai. Look at the look at the patients that come to KEM Hospital. They’re all poor, they’re all miserable. Why do you have to go out? So why don’t you work here and work for the public sector?” 

And I think at that time I decided that… . And I want to give Rui credit, you know, times were tough, we were not financially well-off, we didn’t have a home, we didn’t have… . Actually we had taken loans and he could have at any time told me I think you better move from this public sector that hardly pays, into the private sector, we need the money. But not once. He always encouraged me. That’s where I belonged actually, I loved it, I would do it again. 

When I started working in paediatrics, I moved from KEM to Sion hospital and I was working in paediatrics. At that time, obstetricians were still looking after newborn babies. Only when the babies got really sick, then they referred to the paediatrics. And we had a paediatric nurse, we had a premature unit, but it wasn’t one paediatrician – all the people who were in there went and saw babies whenever they could. 

Being a young paediatrician joining Sion Hospital, I wanted to go off to a conference. So at that time I decided, I said, “Why not analyse the deaths of babies in Sion hospital?” And to my shock Sonalini, it was the neonatal deaths of sick babies I’m talking of, and premature babies was, you know, over 70%. I don’t know how I had the courage, but that’s what I found. I went to Srinagar and read that paper, I can tell you I was the laughing stock of that conference. I came back and told the head of the department, Doctor Athavale, I said, “Why did you let me do this? Do you know what people said?”

So he asked me one question, “Is that the truth?” And I said, “Of course, I analysed all the data.” And the second sentence was, “Why don’t you do something about it?” You know Sonalini, in that one minute, I turned from a paediatrician to a neonatologist. And from that moment onwards, and for years and years to come, my whole thought was how can I save babies from dying, how could I save newborn babies from dying.

And that’s why I spent all my life after that really being a neonatologist. Neonatology, like you said, where even in paediatrics was not a subspecialty, it came much later. But it was looking only at newborns, finding out why they died, trying to reduce the mortality that really made me the neonatologist I am.

Dr Abhay Bang

When we came here in ‘86, maybe within two months after we started working, an eight year old tribal girl was sent to me – a suspected case of heart disease, and because I am a trained physician the case was referred to me. And she was a girl, little stunted, bloated abdomen, pale and mild jaundice. So I suspect that maybe she has sickle cell disease. Till then no case of sickle had ever been reported from Gadchiroli district. 

So I established a test and she turned out to be really a case of sickle cell disease. Now that was the first diagnosed case of sickle in the district. So we decided to organize a sample survey and we conducted a district survey in which we found that 15% of the population had this gene but the actual symptomatics – only the sickle homozygous. They are relatively rare, less than 1% of these findings. 

Maharashtra government was very impressed. It was published as a research paper. Maharashtra government lauded it, they gave me my first award – Adivasi Sevak Puraskar. But nothing happened to sickle. So we went back to the tribal village chief saying, “Look at this problem we found, your government is not doing anything, only giving us an award, so can you raise your voice?” So tribal, old people, they looked at us very coldly and with a masked face they said, “Doctor this is your problem, we have nothing to do with this problem. You called sickle, did we ever tell you that this is our problem? You found it. When you came, we thought accha young doctor couple, why should we disappoint them? So we gave you a drop of blood. We have nothing more to do with this problem, this is your problem, you solve it.” 

So we realized that we had made a blunder. We had picked up a problem for research out of our intellectual curiosity, rarity, but that was not a common experience of the people so they were least bothered about it. And from that we really decided for ourselves, for SEARCH, the ethics, that hereafter we will not conduct any research which directly or indirectly does not help the people on whom this research is done. 

So from that actually subsequently I developed a framework that medical or public health research, could be research on the people. Where researchers practically use people as guinea pigs – he does his research and goes away. And I am ashamed to say that sickle cell research was something of that sort. It was our curiosity. Research on the people. 

Second is research for the people where the purpose is to help the people. But then people still remain only beneficiaries, passive beneficiaries. So the third stage is research with the people. So far we have been trying to follow either research for the people and research with the people. 

My final dream is research by the people, when people will start doing research. But that is how our research ethics emerged. I am a physician so I am always looking for heart disease but at that time heart disease was not a problem. So we should really choose a problem to solve which is people’s problem and not my mind’s problem. That’s what we learn through this sickle cell experience.

MUSIC

HOST

The most lasting impact that the guests of Grassroots Nation talk about are the impressions that were made on them by the communities they worked with–the devastating stories of people who they could not help, and the incredibly moving experiences of communities recognizing their need for food, for care, and wellbeing. The next clips you will hear from Mari Marcel Thekaekara followed by Rukmini Banerji talk about where the urge to act arises. 

Mari Marcel Thekaekara

I have this memory in our office, we didn’t have a hospital, we didn’t want a hospital because for them and for us, we knew that it, that means a lifetime thing of raising funds, etcetera. And we didn’t want to do these huge institutional things. And we were in the office and they brought a girl in. Roopa, you were there, I mean, you handled it. And Roopa just said, “Oh, my God, she’s as white as a sheet, she’s terribly anemic.” You pricked the finger and the blood was pink. I’d never in my life seen anyone’s blood pink. And you did the test. She died, she died while you were holding her in front of us in the office, typewriters clacking in the background. So those kinds of things, the jolt that it gives you and the shock, that you actually see people dying in front of you, that kind of thing would sort of, just, gut wrenching. And nothing can describe the experiences that we had, we can’t even remember, or not remember, but we haven’t recorded, because they were just-

Roopa

Everyday, it was happening all the time.

Mari Marcel Thekaekara

So, I mean, that affected us as much as wanting to do something about that. And one can at least be thankful that one has done things to a point that people are not really starving anymore but the same time you wonder about the future, what can one say? Because this is very complex, you know, you don’t, you can’t keep people where they were 25 years ago. I remember, and this is not… I remember going back to Calcutta, to my old school. There was a very visionary nun there in charge who did tremendous things, Sister Sil, and I used to go and talk to the kids and the whole class… “What is Adivasi?” because I’m working there with Adivasi children. A whole class of 13 year olds, 14 year olds, “Wild people,” “dirty people,” “black people,” “junglee people.” So that’s the kind of thing that I don’t know how you can fight. Some more people have to make films which will affect people because writing isn’t enough.

Rukmini Banerji

I actually didn’t want to go to Graduate School. But I went because my then-husband, you know, had gone there and, you know, it sort of made sense to go. I deferred admission for a whole year, and I worked as a volunteer in our local YWCA, which was the YWCA Child Care Center. 

Actually I was very fresh in America and it was the closest to my house where I could volunteer in the winter, so I didn’t have to walk more than two blocks – that’s why I picked it. But I learned a lot about America from that experience. This was completely a different America from what I had seen in movies and other things. The mothers of the children we took care of were sometimes 16 years old, their grandmothers- I was at the time 23-24.

You sometimes had grandmothers who were not that much older, no fathers in the picture, all kinds of things. And very soon I became their longest running staff member and it was almost very difficult to… . They couldn’t pay me because you know, whatever your visa, but I got a real flavour of early childhood, family, community and whatnot from that one experience. And then actually when I went to Graduate School, I went to the University of Chicago. 

And at the time, the Hyde Park…. Harold Washington was the mayor, Carol Moseley Brown was the senator – she was the first black woman senator. A couple of years later her kids and my kids went to the same day-care in Hyde Park. Down the street was Brotherhood of Islam. Then Jessie Jackson’s Operation Push. So it was a very vibrant political environment. 

So three things I think around that time locally in Chicago, influenced me a lot. One was that we obviously as Indian living in America couldn’t vote, but I could vote in my local school elections. So they had a real democratisation of local school governance and we were, you know, part of that. You could vote, your local school was a very important local platform on which people fought.

The second was I always felt my PhD was very quantitative and I used data from India, but India was very far away. I didn’t have money to go back and forth, I had small children, blah blah. So I volunteered in a school further South.

Again, you know, a couple of blocks so you could walk easily, which was my first exposure to what inner-city Schools are like. And I was a volunteer there for four years. I always went at lunchtime three times a week. And all these thing- that school did not know how to use a volunteer. And when they heard what my education was, they were like, “What are we going to have to do?” And over a period of time I was the seventh grade language composition teacher actually, writing teacher, and that was I think a very formative experience because it made me think what similar kids would be like in India.

And the third was that, to earn money as a graduate student, the University of Chicago’s education school was coming up with a new math curriculum. It’s called UCSMP. It’s still used a lot in the US. University of Chicago School Math Project. So how that math curriculum was developed, how much hands-on work had to happen? You had fleets of graduate students trying out every single thing in local schools. 

So these local experiences of how, you know, how education is organised, how it is governed, what goes into the content… . I mean now I piece it together but I think these were… . And also I think as neighbourhoods, what a school meant in a neighbourhood. How community- like we had a park in our neighbourhood. The park was actually constructed by, you know, whatever, Janseva in a way. And these were things which seem to happen very naturally. Somebody is sick three streets down, somebody calls you and says, “Can you deliver dinner to their house on such and such a day?” So the power of sort of community, organised community and not through a church or, not through a kith or kin. 

And it was a very mixed neighbourhood, but there was a very strong Black culture which was permeating some of this, while you have an ivory tower of the university there.

HOST

Grassroots Nation is a podcast from Rohini Nilekani Philanthropies. For more information, visit www.rohininilekaniphilanthropies.org or join the conversation on social media at RNP_foundation.

Stay tuned for our next episode.

Thank you for listening to Grassroots Nation.