Why the Professor said ‘Thank You’
The year, 1956.
The place, UNESCO Water Insitute in Delft, Netherlands.
The time, early morning.
The occasion, the annual examination for those graduating from this prestigious university, after a harrowing and demanding one year course on Hydraulics, a tough and highly specialised branch of engineering.
The batch of students waiting to take the oral exam were nervous. Naturally. They would enter by one door, face a panel of 6 examiners, all with razor sharp brains and tremendous analytical and scientific skills, and leave by another. A student would never know what his predecessor had been asked. Questions were known to be frightening; more than one student in the past had succumbed to a nervous breakdown.
The young man waited patiently for his turn. He was very thin, his sinewy forearms and wiry frame a testimony to years of Spartan living. It was bitterly cold and he shivered. He came from warmer climates, and here in Netherlands the chilly winds brought a fever in his bones. Vegetarian food was scarce, but he never had to go hungry. There was plenty of milk to be had, and he loved the thick creamy milk, so easily available and plentiful, so things were not too bad. No doubt he missed the daal-roti of his homeland, but it didn’t matter. He had been more than willing to sacrifice his creature comforts in the pursuit of knowledge.
Finally his turn came. The young man was called inside and asked to sit down. In front of him was the panel of examiners. The questioning started. The questions were easy, and the examination was going very well.
But after a while, the young man began to feel uneasy. The questions were too simple. They were far too simple. Was he going to fail? Did the examiners feel he was not capable of answering the tough questions? Were they disappointed with his performance and had lost interest in him? The young man squirmed. One of the examiners asked him what the matter was.
“Sir, the questions are too easy!” he blurted out.
“Would you prefer that we ask you difficult one?” one of the examiners said, seriously.
“Yes please,” said the young man, both anxious and confident at the same time.
The viva continued. The questions became more and more tough. The examiners leaned forward, interested and intrigued. The young man crossed his legs and leaned back. The grilling continued. As time passed, the questions kept moving to higher and higher planes of engineering and technology. The young man did not turn a hair. His preparation was so thorough and his intelligence of such a high order that he stayed unfazed throughout. Not a single examiner could shake him from his purpose, not a single question could shake his nerve. He was carved out of rock. He was in a state of Nirvana. Nothing existed for him and nothing was in his mind, neither family nor cold winds nor lack of food, for it was only his brain, focussed and sharp and pinpointed on the problem in front of him. He lost track of time and forgot his physical discomfort. After nobody knows how many hours the viva came to an end. He stumbled out, exhausted, but at peace.
At the door, he was met by one of his Professors, who had been waiting for him. The Prof embraced the young man. The young man was a little startled by this display of affection. Then the Prof shook hands with him and thanked him profusely, again and again. The young man was aghast. This was blasphemy. It should have been the other way round, he felt. He should be thanking the Professor. He came from a culture where Teachers were equated with God, where students would touch the feet of their teachers and thank them for learning received. The young man began to feel extremely uncomfortable and asked the Prof the reason for the thanks.
“This is because you have made me proud,” said the Professor. “The other students were far below standard. I was actually ashamed of their performance in front of the panel. I had to hang my head in shame. But you, my dear boy, you have more than exceeded my expectations, and those of the examiners. Because of you, I can hold my head high and say, this is what I have taught and this is the calibre of my students. I am proud of you and I am proud of your achievements.”
Long years have passed. The Young Man is no longer young. At the age of 80 and more, he has acquired wisdom and serenity, which he willingly passes to the younger generation. People come from far and wide to touch his feet and take his blessing. And just like his Professor, I am also proud of him. After all, he is my father.
Challenges of Drug Resistant TB (DR-TB)
DR-TB is a form of TB where the causative organism and hence the patient does not respond to the basic First line medication. DR-TB is one of the leading preventable causes of untold misery, great suffering, and back-breaking poverty & economic loss to those who are already living below poverty line.
Thus there are two forms of TB
• DS-TB or Drug Sensitive-TB
• DR-TB or Drug Resistance-TB
There are three known forms of DR-TB
• XXDR ( Labeled as the TDR by the Indian media)
DS-TB is a simple form of the disease which is fully curable by six month of medication known as First line drugs. It is easy to treat, mortality is only 5-10%, side effects of medication are minimal, and treatment can be delivered safely by semi-literate community health workers who have received little training. The WHO sponsored DOTS (Directly Observed Therapy Short course) program is a highly cost effective and efficacious program accepted worldwide and promoted by Governments for treatment of DS-TB. The diagnosis of simple DS-TB is by smear microscopy, a simple low cost technique which is easily available. Medicines for DS-TB are available in plenty.
How does drug resistance develop?
• Use of inadequate regimens and inappropriate Directly Observed Treatment (DOTS) leads to increase in drug resistance levels in the community. It has been acknowledged that good treatment for DS-TB is a pre-requisite to the prevention of emergence of resistance.
• RNTCP recognizes that implementation of a good quality DOTS programme is the first priority for TB control in the country. Prevention of emergence of MDR-TB in the community is more imperative rather than its treatment
• Most important: MDR-TB is a man-made phenomenon – poor treatment, poor drugs and poor adherence to therapy for DS-TB leads to the development of MDR-TB.
MDR is treated by Second line drugs. Incomplete and erratic treatment for MDR leads to worsening of resistance and XDR-TB. Incomplete treatment of XDR leads to XXDR, for which there is no treatment at all. These are people who are doomed to die a lingering, painful death.
All patients of DR-TB breathe out bacteria that are drug resistant. This is how DR-TB is spreading like wild fire. According to Lee Reichemann in his book the “Time Bomb”, the world is on the brink of an epidemic of MDR TB.
Treatment of DR-TB
For MDR-TB, the treatment is Second line drugs. Unfortunately, MDR-TB is typically undetected as we lack the capacity for the lab tests. Neither the tests nor the medicines are freely available. Very few patients of MDR are diagnosed and treated by the Government programs. Even when treatment is started, it is a daunting task, drugs are toxic, side effects are unacceptable, the treatment lasts for two years, and six months of daily injections are a norm. The mortality of MDR-TB is almost 80%, and the psychological impact of the disease combined with the social stigma against it leads to a horrifying scenario. The situation is worse for patients of XDR, who are forced to buy expensive medicines, some of which are not even easily available.
Challenges faced by patients of DR-TB:
• Discrimination by family, neighbours, landlords, employers, school authorities.
• Fear of spread of disease leads to widespread neglect of DR-TB patients. Thus they are shunned by family and receive very little food or care, and are often humiliated and abused by family members who often regard them as a burden.
• Daily injections are painful. Patients sometimes develop painful swellings at the injections site
• Injections cannot be given by community health workers. Patients have to pay a minimum Rs.10/- per day to a local nurse or health provider. These are patients who earn less than a dollar per day and are living below poverty line as defined by the World Bank.
• The side effects of second line drugs are manifold – patients suffer nausea, vomiting, acidity, electrolyte imbalance, thyroid disturbance, psychological problems such as depression and suicidal tendencies, and even liver and kidney problems.
• These patients have to make several visits to the public hospital for over two years, for repeated tests and consultation by the TB specialists. They are forced to incur huge expenses in transport.
• The social stigma of MDR is such that often patients lose jobs and livelihood. So there is very little food on the table. This is combined with expenses incurred to access treatment which makes matters worse.
• Patients of XDR have to buy expensive antibiotics on their own. Government of India does not provide free medication for these patients
Challenges faced by community health workers:
• It is challenging for them to retain patients in the system for two years and ensure compliance
• Patients are reluctant to take the medication, especially painful injections because of the side effects. Constant and repeated persuasion is required.
• Patients who miss their doses have to be tracked on a daily basis; there can be no delay in this. So very high quality work is required
• Counsellors spend a lot of extra time in patient education, in the field and on home visits. Convincing family members to treat the patient with kindness is a difficult proposition. Sometimes, many counselling sessions are needed to ensure this
• Counsellors find it difficult to convince patients to go to the public hospitals for tests. Sometimes patients say that they will not go unless someone pays the bus fair.
• Some patients need to be given food rations.
• It is difficult to ensure that families give tender loving care to DR-TB patients. There is an all pervading fear of contracting the disease.
• Counsellors who are treating DR-TB are constantly being told by their well-wishers to leave their jobs as they could contract a life threatening disease.
Challenges faced by NGOs
• There seems to be no extra funding for treating DR-TB, though the NGO costs go up substantially.
• Counsellors live in fear of contracting DR-TB. Though attrition rate has not increased, the time given by Senior Management to educate and convince counsellors has gone up substantially, thus adding to the costs.
• The training program needs an upgrade. In Operation ASHA, the training manual had to be upgraded and extra chapters added on drug resistance. First of all, the Training department had to upgrade its knowledge and skills in order to train the field workers. Comprehensive and regular retraining is required. All this leads to increased costs.
• Counsellors need to be given regular education on how to save themselves from getting DR-TB.
• NGOs are spending huge amounts of money on every case of DR-TB. Money is needed for injections, transport, and food for the patients. If a patient of DR-TB is the only breadwinner, money for food rations has to be given for the families. Rather than go all the way to the public hospital, sometimes patients insist that the NGO should pay for a test to be done conveniently by a nearby private lab.
• When costs go up, it is difficult to convince some of the existing donors to continue donating for the TB treatment program.
• ALL patients of Drug Resistant TB need some financial support, psychological assessment and nutrition supplements.
DR-TB is a frightening disease. It leads to horrifying human rights violations, disruption of families, and terrible economic loss to individuals, families, communities and countries. The amount of suffering these patients endure is unimaginable, their plight is pitiable.
My personal belief is this: those who are responsible for creation of DR-TB are no better than criminals; they have blood on their hands. I also believe that DR-TB is the new plague that had the potential to wipe out millions. It will cause great devastation to humanity and will have great adverse effect on the world economy.
Treating DR-TB is a challenging task, and there are challenges at every level. Fortunately, there are good people everywhere, and it is because of their vision that we can move forward. With their support, the fight goes on….
-Written by Dr. Shelly Batra, President, OpASHA
That night Hamida tasted blood again.
It began as a cough, a slow, lingering and painful cough, which suddenly became tearing and explosive. She felt as if her chest would tear apart and her entire lungs explode with the violence of the cough. With the cough came the unmistakable taste of blood and phlegm in the mouth.
Hamida was frightened. She rolled on the floor and found her menstrual rag. Wash one, use one, her mother had taught her years ago. Luckily it was the washed one. She stuffed it in her mouth, trying to suppress the hacking sounds. Her husband lay on a narrow cot nearby, snoring loudly, and deep in the arms of Morpheus. Lucky for me he had the drink last night, thought Hamida, he will never know about the blood. If at all he notices, I could pass it off as the ‘woman thing’, and he will never know.
Ever since her marriage, Hamida had been frightened of her husband. Tall and good looking, he nevertheless had a roving eye and jaunty demeanor, and never failed to inform her that he was entitled to three more wives. Initially it didn’t matter, but when the children came, 3 girls in quick succession, Hamida’s fears intensified. More so when the mother-in law would scream- no son! Allah have mercy upon us! Who will save my son from this miserable wretch he calls a wife, this no-good defective piece, who hasn’t given him a single son? Hamida always knew that if she could not produce a son, her husband would take another woman. But what could she do? 2 years had passed since the last childbirth, and she wasn’t pregnant yet. Worse still was the cough that started a year ago. The cough, and the tiredness, and she couldn’t carry firewood anymore, and once when she was dragging her feet she had seen the old woman give her a suspicious look and so she had taken a deep breath and walked fast and brisk and tried to put a spring in her walk , even though her limbs were feeling like molten lead.
And now, there was the blood. Sometimes it would be just a streak. Last month it was a huge mouthful, and she was frightened. She knew what it meant. It was TB, the Killer Disease. Hamida knew she was doomed to die. Hadn’t she seen her own parents and 2 brothers die of TB? And what if the children got the disease? As it is the youngest girl was listless all the time. She wouldn’t eat, wouldn’t play. Why, she looked like a 6 month old! And what if her mother in law found out? Nothing escaped her sharp eyes! What would happen to the children if I am thrown out of the house, thought Hamida in panic? Who will take care of them? And where will I go?
She looked around. It was a small hut, 6 feet by 6 feet, made of card board sheets, with a thick plastic sheet as a roof to ward off the rain. Nothing great, she thought glumly. Every year during the monsoons the roof would come down and the walls collapse. She hated the rains. Everything would be soaked and soggy, the bedclothes on the floor, the firewood, the food in the corner, and the mother-in-law would scream more than usual and curse Hamida loudly when the fire wouldn’t burn and there would be no food. But at least, it was her home. And it was her identity. She knew she must stay on, here with her family, in this little space she called home. She had nowhere else to go to.
Again it happened, the cough, the blood. The mother-in law stirred in her sleep. Hamida got up from the floor. The youngest child whimpered and clutched her hand, but she resolutely pushed the girl aside to steal out of the hut, for nobody should hear her coughing and nobody should see the blood and nobody should know. She walked out and sat on the cold, hard ground away a little away from the hut, and waited for the paroxysm to pass. Nobody should know. That was the key to survival.
-Written by Dr. Shelly Batra, President, OpASHA
Health for the BOP: The way ahead.
Also published by Center for Health Market Innovations.
The phrase “bottom of the pyramid” was first used by U.S. President Roosevelt, and later by Professors C.K. Prahlad and Stuart L. Hart. This term has now come in vogue. Media-persons, NGOs, corporate head-honchos and management gurus all talk of the BOP, either about serving this segment or about the fortune that can be made from this burgeoning market. In India, BOP families have been defined as those who earn less than Rs16,000 ($267) per month. Then there is another group, the BPL (Below Poverty Line), incredibly described by the Indian Government as those who earn less than Rs 32 (60 cents) per day. But these are just numbers. What do these numbers really mean? Who are these people? What is the quality of their lives? What are the challenges they face? And more significantly, what do they do in times of sickness?
Let me begin with what is the reality about BOP families, especially those who are BPL.
This is 1977, my first day in med school. The first thing I noticed was that an entire shanty town had sprung up outside the hospital. What struck me was the fact that there were thousands of people camping there, sleeping, eating, cooking on paraffin stoves, entire families sleeping in the open air or under tarpaulin sheets, waiting indefinitely for their loved ones to recover, who were either admitted or getting treatment as outdoor patients. And they all looked alike in the sense their eyes were dimmed with the same expressions of hopelessness & helplessness & despair.
My first day in the wards: meeting patients, and spent in history taking. Invariably, it was the same story. I sold my land when my child fell sick. I sold my cow. I took a loan 30 years ago for my wife’s delivery, and still haven’t paid it. I have no food to eat. My children have no food. We have no roof over our heads. My children cry in their sleep because they are cold & hungry. My daughter was raped by the money lender.
Welcome to India, the land of Gandhi and Mother Teresa. The country of 700 million mobile phones but not enough toilets. The country where starvation deaths do NOT make headlines, where slavery exists, where inspite of the economic boom and billions of $$ spent on health programs, the govt has not been able to fulfil its promise to its citizens, of affordable, equitable, and accessible health care.
What happened after Independence? Let’s do a post mortem examination of India’s moribund health system. In the 1950s, the government started developing a huge health infrastructure and initiated well meaning and ambitious programs. We have the National TB Control, Malaria Control, RCH, NRHM, NACO, Universal Immunisation etc. Now, there are some very interesting things about all these. Let me begin with what are the plus points of the existing public facilities. There is a huge health infrastructure, which includes equipment & manpower, that has been built painstakingly by the government ,and just waiting to be put to good use. Unfortunately, the machinery is rusted and doesn’t work. At the lowest level, which is the village, we have the government ASHA workers, one for each village of 1000 people. ASHA stands for Accredited Social Health Workers, ( not to be confused with Operation ASHA, which is a not-for profit working for Tb treamnet in india and Cambodia). These government ASHA workers are young women from the village with basic primary school education, employed by and trained by the government to deliver health care. They are supposed to do everything under the sun, from safe delivery to antenatal care to immunisation to TB treatment. The government has trained 600,000 such workers. But tall claims by the government do not translate into reality. The reality is that inspite of this widespread network of local community health workers, India’s maternal mortality and neonatal mortality figures, which reflect the health of a population , are alarming, to say the least
Then for 50 villages, there is a PHC or Primary Health Centre. For 100 villages, there is District Hospital. Most of these are equipped with facilities for surgery, obstetrics, immunisation, etc and there are doctors and nurses posted there. In big cities there are huge secondary and tertiary care hospitals, some with medical colleges attached to them, and what seems an army of resident doctors and other staff. Each is as large as a small city and functions like one, with various departments co-ordinating with each other for smooth and efficient functioning.
But if we look beneath the surface we can see the cracks in the system. There are multiple challenges that exist, which are as follows:
- skewed doctor patient ratio,
- not enough beds,
- long lines for tests and medicines,
- crowded OPDs so doctors barely get a minute to examine and prescribe,
- long waiting list for OTs, cancer treatment, or dialysis, heart surgery and transplants.
India’s doctor patient ratio is 1:800 in cities, but 1:3000 villages or even worse. The WHO recommends a doctor patient ratio of 1:1000. But absenteeism is common, a government job being a euphemism for a cushy life where one can get a salary and benefits and pension for doing a negligible amount of work. At the PHCs, you often find that there are no docs, no nurses, no paramedics or staff. The centres may be closed and shuttered for weeks, often there is no equipment and theft of medicines and disposable is a regular feature. And all this is because there is no accountability. The infrastructure exists, but is being misused. It’s a behemoth, guzzling funds.
The Government makes tall claims. For example, in 2006, the government of India declared that there is 100% DOTS coverage, which means the entire country has facilities for TB treatment. Unfortunately, the truth is very different from reality. There are 2 million new cases of TB every year in India, and half a million deaths. This is because the facilities exist, but are so remote that the poor cannot access them. It takes 2 days to go to the next village by a bullock-cart. How can someone go 60 times over 6 months for TB medicine? A similar situation exists in cities. People earning less than a $ a day cannot spend 20 cents for the bus fare and spend the whole day standing in lines for treatment, because, this would mean there is no food today, and no job tomorrow.
Now the government has several schemes in place for the needy. It is providing control of communicable and non-communicable diseases, providing curative as well as preventive/promotive care through a chain of primary, secondary and tertiary care health institutions. The government has also launched the National Rural Health Mission (NRHM) in 8 states. Some of these schemes were well conceptualised, but implementation has become a challenge. These are:-
- Health Insurance for the BOP: This is known as RSBY, in which a smart card is issued to BOP families. This scheme has now been extended to unorganized workers like street vendors, domestic helps, beedi workers and those working in building and construction sites. But the reality is that even the smart cards have not been issued to all, and if issued, are worthless. The RSBY card entitles a person to up to Rs. 30,000 in health-benefits (for admission). But no nursing home is willing to accept these patients, because the government has not paid up for the past bills. So the patients keep running from pillar to post for admission, and when they do not get admission anywhere, they go back to the public hospitals.
- All BPL patients suffering from mental disorders like depression, anxiety, adjustment and personality disorders, alcohol and drug abuse will get a free one-time grant of up to Rs 1 lakh for treatment at any super-specialty government hospital/institutes. Hospitals have been given a corpus of funds Rs. 10- 50 lakhs, for distribution.
- Vandemataram scheme- This is another optimistic idea, but quite impractical. The idea is that private nursing homes will do free distribution of RCH ( Reproductive & Child Health) services, ie immunisation, giving condoms, pills, ORS, iron and folic acid etc. But who is responsible for doing this work? what is the payment? How much is the work done? Is the distribution actually for free? These are questions that need to be answered. Another thought that comes to mind is that why on earth would a for-profit revenue generating nursing home waste time on this? The few private nursing homes who might be willing to do this get so disgusted and disillusioned by the hurdles they face in obtaining the free supplies that they just give up. In a nutshell, these schemes amount to unrealistic expectations on the part of the government.
So what is the solution?
I think the solution lies in building effective partnerships with the private sector. Serving the BOP should be the work of NGOs who have built the pipeline into disadvantaged areas, not the government. The government must realise and accept its limitations. Partnerships ensure that we are utilising existing infrastructure and personnel put in place by the government. This saves duplication of effort and brings down costs substantially.
Policies that are being laid by the government must be done in collaboration and after discussion with civil society representatives, who are aware of the harsh realities.
Accountability has to be a key component of every health enterprise. And accountability & transparency have to be in every aspect, whether its use of funds, or delivery, or results. Also we must measure outcome and impact, not just processes. The government says- we have trained 600,000 village health workers. But how many women had safe delivery? How many tetanus injections given? how many children immunised? And the million dollar question- how much of it is true? Recently, there was a sensational news item in the Times of India, where our health minister Mr Ghulam Nabi Azad declared- health data is fudged, which is a shame indeed. What is being done to ensure accuracy of data?
The solution lies in technology. If we harness the power of technology, we can solve these issues. My organization, Operation ASHA, is using fingerprint identification to identify every TB patient, to ensure every dose is taken, and to verify the presence of health workers, so no one can fudge data.( Visit www.opasha.org for more information on this). This is all the more important when cash incentives are given for delivery of results. Imagine if the government health worker had to take a fingerprint at the time of giving tetanus injections to pregnant mothers, or giving immunisation to children, or giving ARVs. Fudging of data would become a thing of the past. This is because data entry can be fudged, but not a fingerprint.
Another point to discuss is what should be the incentives for NGOs working in the health space. Well, I feel good work is incentive in itself. The biggest incentive a private player would have is excellence in its results, both qualitative and quantitative. Also, if an NGO is allowed to work in peace that itself is a great gift from the government . But the government can do a lot to smoothen the way ahead and facilitate work.
Firstly, the government. must cut down on red tape, do away with bureaucratic hurdles, and simplify things for NGOs. All those multiple paper forms and MOUs that go on ad nauseum should be done away with.
Secondly, the government must keep its promises. NGOs must be fully funded by the government so they can concentrate on work, not fundraising! For most NGOs, fund raising is a constant ongoing process. Also, government funds must be adequate and given timely. At present funds are woefully inadequate. Too little is given, and too late. Government officers must be made to realise that they must not keep delaying and dillydallying on payments, it is most annoying, and will only serve the purpose of breaking a partnership. Another reason to pay more and on time is so that NGOs can afford good management who can be given market salaries. All payments must be performance linked.
Thirdly, the government and other international donor and technical agencies must study and promote best practices and incorporate them in the government programs. They must measure the outcome metrics, not processes or inputs, and fund low cost, high impact NGOs with the best results and eye on quality, and help them go to scale. This has happened already in Bangladesh where the government has given over the entire TB treatment budget and work to an NGO, BRAC, Bangladesh Rural Action Committee. BRAC is now directly getting funds from the Global Fund. This ensures a smooth path, ease of work, and minimal delays, all of which ultimately benefit the BOP segment..
Fourthly, the government must use the delivery channels laid down by established and successful NGOs to pump in other health programs. The last mile of the cable is the most difficult. For example, OpASHA has got the connectivity to serve the poorest of the poor for TB treatment. This pipeline can be used to deliver RCH programs, nutrition or anything else.
The government must also use NGOs for training health workers, which, all said and done, is a highly specialised discipline. In my opinion, it is as important to know what not to teach as what to teach, and overburdening CHWs with information will not help anyone. The government must take the help of NGOs in maintaining accountability. For example, the government has promised 50,000 worth of laptops, internet etc, and other things to its ASHA workers. But who will keep an eye on things? What will happen to the equipment? will the laptops be used or misused? Will they be sold off? If there is no accountability, this will be another waste of resources in a resource poor country, just more money going down the drain!
Another crucial point is that the government must honour its commitment to the poor. Often schemes fall flat because of government apathy.Of course, it has to upgrade and step up facilities in hospitals, build capacity regarding doctors and nurses and medical personnel, so both- the doctors and the patients get a fair deal.
Lastly, every employee must be made accountable. Use technology to prevent absenteeism and theft. Put systems in place where those chronic absenteeism leads to a Penalty.
Before I end this blog, let me write a little more about the BOP segment. When we talk of the BOP and backward areas, we must remember that they are of 3 kinds. These are villages, urban slums, and tribal areas. Each has a different character, different geography, and thus different challenges. Urban slums are densely packed with people, and patient density is also very high, they consist of migrants who have no family support, and there is a very high incidence of alcohol and drug abuse. In rural areas, patients are scattered, but there is a family and social structure which has a positive impact on health, and village leaders play a prominent role. The tribals are the most underserved of all of India’s poor. They have no food, no money, no health benefits, no housing or sanitation. So whatever we do, we must keep the socio-religious milieu and cultural norms in mind. Only then can we make a difference.
Another exciting thing that has happened in recent years is that health is no longer the domain of physicians alone. Economists, financiers, businessmen, technocrats, professors and management experts are all focussed on global health. This multi pronged and multi dimensional approach, perhaps, will provide the solution to global health issues.
At a personal level too there are many things to be considered. Life is not easy, and decision making can be tricky. Sometimes in life, we find ourselves at a crossroads. We see life stretching ahead of us like a long road, and there in front of us, two paths are diverging, as the post Robert Frost has immortalised in his lines:
“Two roads diverged in a wood, and I,
I took the one less travelled by,
And that has made all the difference.”
When you look along one road, you see dazzling lights, there’s money and music and fame and you can visualize a glamorous lifestyle. But the other road is dark and gloomy. There is squalor and sickness, you can hear the sigh of those who are suffering, and there’s an all pervading stench of death and disease. You want to choose the second one, but you stand trembling and irresolute and afraid for it’s a daunting task ahead of you, and you hesitate to use your expertise to provide succour to the needy. Now, this is where governments and NGOs can play a critical role. Simplifying procedures, improving working conditions and giving market salaries to those working at grassroots level will be one way to attract the best talent. And, that is the way ahead.
-Written by Dr. Shelly Batra, President, OpASHA
I land in Cambodia with great excitement in my heart, and not a little trepidation.
It’s a balmy evening, the very air is heavy with unknown scents, and there are trees all around the airport, bursting into leafing. It seems that nature has conspired to make this a land of fulfillment and fruition. Was it just my fancy that I felt as if I had stepped into the Garden of Eden? The mind plays strange tricks on the body, and my fevered imagination conjured visions of vast fields, green and verdant, and forests thick with foliage, and trodden paths winding dark and mysterious where footsteps fall, soft and stealthy, and for a moment I felt my heart would surely burst with emotion.
Phnom Penh came as a distinct shock. A small airport, long lines that snaked forward slowly, and keen-eyed Visa officers. I stepped out into the warm night, and one thing that struck me was the relative silence. When you land in New Delhi the clamor hits you like a wave, the din is deafening and you wonder, oh heavens, will this never cease? But here, the peace was balm to your wounded soul, and the tortured mind found solace in the music of silence, and the occasional shrill cries of roadside vendors seemed like the chirp and cheep of birds twittering in an azure sky.
India is a land of great diversity, contradictions and disparity. Cambodia, on the other hand, is uniformly rural, barring few parts of the capital where tall buildings stand cheek by jowl with straggling hutments clinging to their back. Phnom Penh is where the well off congregate. Mighty officials, and their might is undisputed, have their offices here, and so do all foreigners, and the place is teeming with well meaning individuals and organizations, all trying to bring development to a ravaged country.
If I were to use ravaged for Cambodia it would not be an exaggeration. Down the ages, it has received more than its share of troubles. First there was the dictator, who killed dissenters in public, whose brutality was a byword in a harsh and hard world. And then came the Khmer Rouge, under whose rule more than a million died in the long march to the Laos border. The killing fields of Cambodia bear testimony to an inhuman and barbaric regime which wiped out the intelligentsia, only permitting laborers, farmers and artisans to live. How does a country survive without industry? In India wherever you go, there is some activity going on. There are fruits sellers and teashops and secondhand books-sellers and beauty parlors, every kind of business is going on, even in slums and villages. The very air is bustling with activity. There is noise and dirt and pollution no doubt, and conmen and crooks out to fleece the gullible, but there is a very real sense of commercial activity, which translates into food on the table and schooling for children and money for buying essential goods, even to pay for health. In Cambodia, the deserted and quiet dust tracks, the very stillness of life, spoke another story. It was as if life had passed it by, and somehow the country has got left behind in the inevitable march towards progress. My heart bled. I was perilously close to tears.
Charlie Samnang is Operation ASHA’s Senior Program Manager. He has an M.D. degree and 12 years of experience in public health. Charlie and I went to Pema’s house to meet her. Pema lives in a one room hutment. When we reached, she was sitting on the floor. She put her arms around me and hugged me. Her elderly mother watched fondly, her face creased with smiles and wrinkles, while an innocent babe played in her arms. Pema has extra pulmonary TB, ie large cervical lymph nodes, nodules in the neck, and has been on treatment in our program. Pema is one of the several thousand TB patients in Cambodia, a country where 400 out of every 100,000 people have the full-blown disease. This number puts Cambodia on the WHO’s list of the 22 countries with the highest rates of TB. Cambodia’s TB problems are compounded by poverty, with over 30 percent of all Cambodians living below the poverty line, according to the latest World Bank estimate. Pema is deeply grateful to the Operation ASHA counselor who not only visits her daily and supervises the medication, she has also convinced the family members to get themselves tested for TB.
One day I took a ferry across the river. The ticket cost 500 riel, about 10 pennies. I remember crowds swarming in the ferry, carrying parcels, fish, ferrying bicycles and motor bikes, and there was even a car. I got quite a few curious looks, and some smiled. Some urchins scrambled into the boat just for the ride. The ferry moved ponderously, majestic in its slow and deliberate motion, somehow it gave me the impression of a galleon, a ship in full sail. The Mekong was a vast expanse of water; its placid unruffled surface now rippled as the ferry plunged forward and ploughed its way through. I watched, mesmerized by the strangeness of the universe and drunk with the beauty of the far off huts visible on the surface of the water. In the prow of the boat, his back towards the teeming humanity, stood a Buddhist monk. He stood absolutely still. His orange grabs were faded and old. He was painfully thin. I had an absurd impulse to walk over to him and ask him for his blessing. When the ferry landed on the other side, there was a mad rush to get off the boat. I got off with the others. The monk was the last one to get off. He seemed to be in no hurry. I scrambled up the bank and looked back. He was still waiting patiently.
So this is the other side of Phnom Penh. There is but one road, just a dust track, which runs for about half a mile, then peters off. Somewhere a gramophone is blaring a raucous tune. This is not a tourist’s area but every now and then the occasional visitor drops in. See, no more roads, says my guide as I walk further. I get the impression of vast tracts of land, uninhabited, where human footsteps have not trod, areas that are raw and untouched and throbbing with a primeval force. A few steps back and I am back into civilization, women smile shyly and sell me souvenirs, and urchins mob me to get their picture taken and marvel at the mystery of a tablet.
But sometimes in the silence of the night, I feel as if I am back in Cambodia. I am sitting on the floor, with my arms around Pema, and her little boy is playing. The Mekong flows on, now calm, now a torrent of wildness that is frightening in its intensity and disturbs the senses. Vendors by the roadside offer me fried snails and tiny roasted bananas, the size of my finger. And there on the boat is a monk, with eyes of compassion and hands raised to bless, his face that of a mystic, absorbed in the ineffable. My heart overflows, I long to escape the bondage of the body and become one with the universe, so the trees and the river and the monk all fuse and blend in a swirl of emotions that engulf my shuddering soul.
-Written by Dr. Shelly Batra, President, OpASHA
A patch of blue.
Long years have passed, but I still remember Potla. This was 1978. The place was the Tuberculosis ward of King George’s Medical College, Lucknow, where I was a 2nd year medical student, newly graduated to the wards and clinical work.
Potla means bundle. Potla had been born at home, his mother told me. Maybe the midwife who delivered him took one look at the little baby wrapped in rags and named him Potla. Maybe it was a sibling, who out of derision for this miserable scrap of humanity transferred this epithet on the unsuspecting infant.
Potla was bedridden. He was a bright eyed 10 year old , optimistically addressed as Raja, which means king, by his doting mother, thus creating endless confusion at mealtimes, or whenever patients’ names were called by the Nurse for tests , injections , trip to the specialist’s office, or whatever that goes on in hospitals. But the mother was persistent, and the hospital authorities unrelenting in their desire for exactitude, so confusion would prevail all day.
But there was no confusion in my mind at all. I was very sure that something is terribly wrong. Otherwise why Potla should be confined to bed? Why should he not be playing or at school like other children? Why was he given painful injections every day? Why wasn’t he allowed to get up or walk? Why, even his meals had to be swallowed in the supine position. Every now and then he would wriggle or squirm or try to raise his head and get a scolding form the nurses. Everything was unfair.
To my mind, the most unfair thing was that Polta was a ‘middle patient’. This was a long ward with 2 rows of beds, and windows at the far end. Potla was somewhere in the middle, which made it impossible for him to look out of the window, more so because he was not allowed to sit up. One day I put my head close to his on the pillow and tried to see the view from the window. Much as I craned my neck, all I could see was a tiny patch of the blue sky. That’s all. No trees, no birds, no children. Nothing. This seemed to me the last straw, the ultimate in despair and hopelessness, and I longed to do something for Potla, and failed miserably in all my attempts.
In the eyes of us lowly med students, Professors were gods. That morning, the Professor & Head of the dept came striding into the ward in an immaculate white jacket, gleaming in its importance, with a long line of harried looking residents and nurses trailing after him. They stood around Potla’s bed for the case presentations and discussion, which took a long while, as Potla was a complicated case of TB. He had Pott’s disease, ie TB of the spine. This weakens and degenerates the vertebra, and dead necrotic tissue leads to pressure on the spinal cord and even paralysis. This is why he was confined to his bed.
“You, girl!” The Prof boomed at me, while I trembled. “What is the most important thing you need to do for this boy, apart from medication. What special care is needed? ”
Everyone looked at me expectantly. I was shivering in my shoes. All eyes were on me and my mind went blank. I racked my brains but nothing came to my mind.
“Come on,” said the Prof impatiently. “Think, girl! Think that you are in charge on the ward. What will you do for the patient? What does he need the most?”
“The view from the window”, I blurted.
There was a stunned silence. I thought the earth would swallow me alive. Then there was a shout of laughter, led by the prof himself.
“These ssstupid ssstudents’, hissed the Chief Resident in angry tones. “ They seem to be born with water- on- the- brain. The patient needs an orthopaedic brace to minimise movement”. The prof was more relenting and went on to talk of psychological impact of positive thoughts and surroundings and the importance of sunshine in patients’ lives.
There the matter ended. Next morning, a patient was discharged, and Potla was given a bed by the window. I was overjoyed. So was Potla. We would watch the kites flying, a myriad of colours and designs, and bet on the winners, and the Chief would glower and growl as he would walk past.
Potla spent a full year in the ward. His mother came to recognise me. After 3 months, I moved to Paediatrics. I would visit Potla occasionally and check on his progress. Then a day came when he was allowed to take a few steps. I saw him totter on his feet and reel backward like a drunkard the first few times he tried to walk. His recovery was quick, and within a few weeks he was discharged.
That morning, I was studying in my room in the students hostel, when potla came to say goodbye. I was bleary eyed with lack of sleep. Potla hugged me tight. His mother touched my feet reverently and I was moved to tears. They were going back to the village that very day by bus, Potla told me jubilantly, and talked of his friends and school and how he planned to fly kites all day long.
I looked up at the sky, dappled with colours, the dazzling sunshine and drifting clouds making shimmering patterns. I thought to myself, this is the legacy, the inheritance of a TB patient who has recovered. No longer a patch, but a vast expanse of blue. And a wide horizon where he can soar like a kite and reach for the stars, and live life again, fully.
-Written by Dr. Shelly Batra, President, OpASHA
3 minutes, and 2 deaths by TB
It is shame that India, the emerging super-power, has one fourth of the world’s TB burden. The government’s National TB Control Program has been in place since decades. Yet each year there are 2 million NEW cases of TB and half a million deaths.
I have been typing for the past 3 minutes. In these 3 minutes, 2 people have died of TB in my country.
So what are the issues involved?
- First and foremost, there is so much social stigma against TB that patients tend to hide their symptoms. They go into denial, either they do not take medicine, or take just for a short while, then stop, and the dreaded MDR-TB (Multi Drug Resistant TB) sets in. Each year, 100,000 women are thrown out of their families to die on the streets if they have TB. 300,000 children are thrown out of school because they themselves have TB, or they are forced to leave school and take up jobs to support the family if a wage earning parent has TB. TB is the reason why workers are thrown out of factories and entire families starve due to huge economic loss. The total annual loss (of wages) to TB patients is an unbelievable $ 300 million every year, and the indirect loss to the Indian economy is $ 23 billion per year. This is huge amount of money that can be put to good use in any welfare or development program. We have to understand and accept the enormity of the problem.
- The second issue is lack of education. Often patients still believe that TB is a curse from the gods, and they are doomed to die. Though the Government has provided TB hospitals and diagnostic centres free of cost, there is very little awareness about free facilities. Often patients feel intimidated by large hospitals. They may hesitate to go to a TB hospital for fear of someone noticing it. There is no-one to counsel patients about various issues, how to prevent spread of infection, nutrition, how to take care of side effects of medicines, the necessity of full and complete treatment, the looming threat of MDR-TB and how it can be avoided.
- Another issue that needs to be addressed is lack of accessible treatment centres. TB treatment lasts for 6 months, and patients have to take medicine at a designated DOTS centre 60 times in 6 months. Medicines are not handed over to patients. So accessibility is a key issue.
So what is the solution? The solution is a multi-pronged attack, community empowerment and technology, and advocacy at all levels. Doctors, businessmen, politicians, all have to step out of their ivory towers to join the fight against TB. When my colleague, Sandeep Ahuja and I established Operation ASHA, we decided to focus on TB (though my medical expertise is in Gynecology and Laparoscpoy Surgery). Our concept was of taking free TB treatment to the doorsteps of the disadvantaged, so no-one has to miss work and wages in order to access treatment, and privacy is maintained. We have established a dense network of treatment centres, in shops, clinics of quacks, and socio-religious establishments. We are training slum dwellers and villagers to work as counselors to educate patients, help them in every way, to de-stigmatise TB, ensure family support, and try and save jobs and prevent discrimination. We are using technology, biometrics i.e. fingerprint identification of every patient to ensure full treatment and prevent MDR TB.
It is heartening that now film-stars are using their celebrity status to bring the country back on the path of righteousness, and are providing this much needed service to the nation. TB is one issue that needs a much deeper involvement of all stakeholders including the well-heeled intelligentsia, and most important, a charismatic leadership to keep the flag flying. We need another Mother Teresa, and that will be the way for eradication. A new leadership will ensure that the fight goes on, and finally there will be some hope of winning.
-Written by: Shelly Batra, MD; President, Operation ASHA