An Open Letter To Dear Prime Minister Uncle By A Child Suffering From TB
Parvati is just three and half years old from a village from Panna district from Madhya Pradesh. She is suffering from tuberculosis, and if she was actually to write her ordeal, the words would have been different. It would have shaken us from the deep slumber of indifference! However this open letter is an effort to decipher the emotions of the children suffering from TB in India and how they perceive the system, health care practices and the decision makers.
Hello Uncle, I am Parvati.
I am from Majha village from Panna block of Panna district.
The moment I said Panna, your mind must have registered the emerald mines that the place is famous for. I can perceive the same glee in your eyes as I had seen in the eyes of some of the townspeople when they heard the word Panna.
I am three and half years old and, along with my family stay in a single room hutment. We are six people-my mother, father, and three other brothers and sisters. Except me, all the others work in the stone quarries.
You see, I am suffering from dry disease or what you people call malnutrition; yes, the same disease which you had termed “National Shame” some two years back while releasing a report. I am told there is a ministry called statistics and programme implementation which releases reports now and then on us; it seems, in 2012, half the children from our country were malnourished like me. Somebody told me that there is an organisation, like a school in our village, might be, or panchayat, called National Nutrition Institute which knows how many of the children from our state are like me-52 lakh is the number, which I don’t understand, but must be a whole lot; I also heard that 8.8 lakh children are critically malnourished like me; is it so? My God!
Uncle, you are a doctor and doctors tell that malnutrition and TB are like friends in crime-hand-in-glove together. The doctors also tell that this destroys the immunity which helps to fight the devil called TB. If so, we all children who are malnourished would fall prey to the devil called TB; you see, I have already been engulfed by this black magic.
I am told that we all malnourished children from MP will be checked for TB; people here tell that this checking is going on with old methods; in other countries, it seems new technology is being used to do the checking. People tell it is good. If so, why not use it here? But my friends say, it is always like this for us poor in this country. The new technology and instruments are for the rich that come in cars.
Doctor Uncle, whose name I heard was Sudhakar Pande, gave me some medicine. I heard him telling my mother that the medicine is given as per the weight and as I was 9kg, I got the medicine accordingly. I also heard that there is a programme called RNTPC which has medicine only for children who are between 6kg and 30 kg. So if a child is, say, 5kg, what would happen to it? Would not it die without medicine? Or you’ll give them wrong medicine?
The doctor uncle was good, and he told my mother to feed me adequately. He told her that medicine does not work properly if the child is not fed properly. My mother did not say anything but I knew she was worried. I know how hard it is for her to feed us. My parents do not get work daily in the quarry. If they work for a day or two and they are asked to stop to come to quarry. An uncle from the town said, why not you people work on something called employment guarantee? My mother kept silent but an aunty told him that there is no guarantee of employment guarantee; what does that mean? For last four-five years there is no rain; I heard this is called as drought. My father goes to the far away towns and bigger towns every year and promises me that he will come with so much money and sweets and he will never go back again to the town. But after a few days, when there is nothing to eat at home, he, along with my uncles from our village go to cities and return after two-three months.
We don’t have a ration card but even others who have the ration card get only 20 kg of grains; an uncle was telling my mother that the state government (what is this, I don’t know) has disobeyed the orders of Supreme Court (what is this, is it like a school teacher reprimanding children?) and instead of 35 kg it is only giving 20 kg. Dear uncle, it is not correct to disobey somebody who is elder, and wise, is it not? We don’t do that at home. We respect our elders, why not that somebody called state government obeys the wise orders of the elder called Supreme Court? You town and city people seem to be behaving very oddly!
We are very poor and somebody tells me that you have a thermometer to measure poverty the way you measure fever. But, you see, this machine is not good. It has wrongly put the poor people out. It seems, your government in the state wants to tell others there are very few poor people in the state. Why is it hiding the facts? If you are poor, you are poor, it is simple. I don’t understand why these town and city people want to hide things! Must be a sheer habit, is it not Uncle PM?
My mother was telling us the other day that your government is very good. It has created something called food security for all. My father was telling my mother that along with grains, we’ll also get oil and pulses. But I think they are sad, now. They are disappointed because you have only given coarse grains. Do you think it is enough for us? The doctor uncle had told my mother to feed us with pulses and vegetables, and I do remember, he said, we need nutrients and energy which pulses and oil will give. Why have you gone back on the promises, dear uncle? In the first place you make promises which we had not asked for. Then you turn your back on your own promises. Uncle, this is not good!
Do you know, uncle, the Anganwadi Sir told my mother that TB is not their work; nutrition is not the responsibility of the doctor uncle treating us. So whose responsibility it is, dear uncle? Is there anybody out there to look after us, the ill I mean? If it is not their responsibility why are they here?
At my age, it is hard to follow what it means but last few days, I have been hearing words like government, department, PHC, Anganwadi, nutrition, TB, BPL etc. I hear that there should be some department to look after us. Do you have any department, uncle, to look after us? If not, when do you intend to act? See so many of us are ill and dying and those departments of yours are telling that it is not their responsibility to act? If not, what are these departments for, uncle? If not good, throw them out and give a new department that will say that it is their responsibility to protect us. A few days back Naresh died of TB. His father, Naresh was one among those who did not shed a tear but looked at the sky. The Uncle from the town, I heard was telling his friend that TB is one of the major causes of deaths. If so, and if it is one of the top ten, I think I will die.
I am confused, dear Uncle; I heard those people talking to each other. A person was telling that I was malnourished and TB came after that. The other person shook his head saying I had TB and because of that I was malnourished. A sister from the town, I heard telling the man from the town, that I had TB because we cook our food on a Chulha, but all the people in the villages have their food cooked on chulhas, and my elder brother told me that more than 7 people from 10 in the country do the same (I don’t know how he got the information but it seems the sister from town once said something about a big book named NFHS 3 having all the information, and one day want to read this book).
Some people say migration and malnutrition are related as brothers and sisters. People who come from towns spending months there tell us that they stay in small huts surrounded by filth and stench. The Doctor Uncle tells that this is the field from where the TB grows like crops grow after cow dung is put. Now, I have inkling that my papa must have got his TB from there and I got my TB from him.
For last six months or so, the Anganwadi sister and my mother gave me TB medicine. But they are worried that weight is not increasing. They do not know whether I have TB still or not. I cough a lot, still and both of them do not know what to do; how to find out whether I have TB or not. The other day, they were talking about something about RNTCP, TB, course follow up and an outcome card. I don’t understand anything of this but my mother said I don’t have an outcome card. Uncle, does that card have coloured pictures? I would like to have one to play with, dear Uncle!
Uncle, I understand your problems. The situation is very very serious, is it not dear Uncle? You have created RNTCP but forgot to make arrangements for measurement of TB. It happens, dear Uncle, and I have seen my dadu (grandfather) forgetting little things at his age. The sister from the town told my mother that something called BCG is a sure shot vaccination for TB. But nobody from our village had any BCG vaccination. These must be in short supply, is it not Uncle?
Uncle, after listening to all this talk I have arrived at some conclusions (all these elder always come to conclusions, so I do): In our country nobody is responsible for anything as there are no clear directions for anybody. Anganwadi sister says there is no programme for her children (0-6) to have a regular check up for TB; my brother was telling me that his teacher, too, was telling that there is no programme in the school for TB check up. I heard the sister from the town crying angrily at the headmaster as to why TB check is not mandatory part of school health programme! What can the teacher do, dear Uncle, when you have forgotten to tell them to do so.
Uncle what is scientific and technically correct way? I heard this listening to the talk these elders from the town do all the time. They say there should not be any gap in the medicine consumption. Or otherwise, the person could have multi drug resistant TB. If everybody knows this, why is not that centre called RNTCP not providing medicine regularly? I heard that about 7500 children like me have had no medicine or a gap in providing medicine last year. Some of the children, I heard were given medicine that was meant for the grownups. This, it seems is unscientific and faulty way. I want to know, dear Uncle what is scientific and correct way, and why you all people who are so educated (unlike us) do not believe in scientific way? Are you superstitious like our village people? Now I understand why there was no medicine in this hospital for more than a fortnight. It must be inauspicious fortnight to fill in the hospital with medicine, is it not?
Dear Uncle Prime Minster sir! What will happen to my appeal? It seems many groups and organisations had appealed to you to stand up and give a strong message about TB. It seems more than 1000 people die of TB per day in our country. My elder brother tells me that you know better than his school teacher about how much is two and two. It seems you have studied something called economics; I would like to do a little of two and two myself, dear Uncle, like you. Does that teach you, dear Uncle, how much a family loses if they fall ill? The town sister was saying each of the family loses 1 from 5 parts because of TB. She told me that if there was no TB, we would have full roti; TB makes the fifth part vanish like black magic in thin air. This means at least forty-fifty parts vanishing in thin air in this village, and my God, how many rotis must have been lost in the country! You went out of the country to learn and understand this simple two and two. Did not they teach you anything there about this? So why are you not doing something, like my uncles son who at times stands in the middle with a stick and tells us all small children to listen carefully. Why don’t you do like that with a stick in hand giving a strong message?
The sister from the town says that you are good person. She tells us that good work has been done in your rule. It seems you have declared TB as notified disease; that you have banned wrong tests. It also seems you have increased the money for TB treatment-from 400 crores in 2011-12 to 750 crores in 12-13. Good, good, dear Uncle, although, I don’t know how much this money is but when my mother and father and rest of the people here say this is huge, it must be. These educated people from Bhopal say that health belongs to state government and you and your centre should not interfere with that. Is it so? Then don’t do it. But our village wise man strongly reprimands all the families if they do any wrong. As head of the country, you should follow our village wise man.
I know you are a good person and kind at heart. It seems you are planning something big. I appeal you to do something that will bring back my playing days and like rest of the children suffering would thank you for that. Come on uncle, don’t just go on planning, do something. Do you hear me and all the other children who are waiting for the death, dear Uncle?
Parvati from Majha
Prashant Kumar Dubey