Letter from a friend of JSS

[Daniel Pepper]

Dear all:

Please find, attached and below, a letter of appreciation from Dr. Rajnish Juneja, a cardiologist practicing at AIIMS, the medical college and hospital in New Delhi where many of the founding members of JSS studied and later worked, before moving to Chhattisgarh.

Many, many thanks Dr. Rajnish.

Kind regards,
 Daniel




We are all aware of the huge number of ‘deprived’ people in this world — deprived in various ways but most notably in the three basic needs: food, water and shelter. The fortunate ones like me contribute a miniscule of my income occasionally to NGO's about whom we know very little but hope are honest. There is no dearth of money in India and probably no dearth of people willing to give substantial sums, as long as they are assured it will be used properly. The problem with all aid - government funds and well meaning schemes alike - is that it never reaches the actual beneficiaries. There are so many middlemen in this chain that by the time it reaches the last step, more than 99% of the initial sum has been gobbled up. Even our Prime Minister, Dr. Manmohan Singh, laments about this problem when he sanctions billions to help the poor, but considers himself helpless. Ultimately it is delivery that is the key to help the deprived. JSS is just that. Not many people believed that these eight doctors (later ten) who set out to do this task back in 2000 would reach anywhere near the true need. Eleven years later when one looks at JSS you realize how much can be achieved if you are determined to the cause. To me, JSS is the ultimate proof of the importance of delivery in this entire ‘social welfare’ concept—it also tells me that all else is hogwash, whether it is Bill Gates donating billions or my own brother donating 500 US dollars. If we are serious about doing something for the ones on the road the only way is by being the person of delivery.

My association with JSS dates back to 2001 when I came back from my yearlong fellowship in Cardiac Electrophysiology in London. I came to know that Yogesh/Rachna, Raman/Anju, Anurag/Madhavi and Bishwaroop/Madhuri (the 4 couples who started JSS) had started working in a run down shackle in Ganiyari, a village near Bilsapur. Fortunately for me, I decided to go to Bilaspur to see the work and today I am thankful to God for having ‘sent’ me there.  Without seeing JSS and its surrounding no one can even imagine the magnitude of poverty in India and also what can be achieved if one has his/her heart in the right place. Over the last 10 years I started going to the place more and more frequently and as of today manage to spend at least 4-5 weeks in an year there, one week at a time. The clinic at Ganiyari grew, the patients increased and the staff increased. Simultaneously, the village program started reaching out more and more into the interiors of the state. Going to the villages is not an easy job—generally it is hot and humid, the road is a test of your bodies flexibility and endurance, and the Mahindra jeeps that are very sturdy and appropriate for the difficult terrain do not provide you with a comfortable seat. It used to be 2-3 hours drive one way early on but over time the clinics went even deeper into the forest and the doctor would have to stay overnight in one of the villages to be able to give adequate time at Bamni, one such village.

I was inspired by the inner strength of each one of them. To carry on working daily in those circumstances was just mind boggling. There was no scope for anyone to take leave or relax for a few hours or say on a morning “I am not feeling too good, so I can’t go or I will go late.” The work pressure was just too much, mainly because of the number of patients.  Everything had to be done by yourself—there were no trained nurses, no technicians, no orderlies or super-specialists — everything from diagnosing a cutaneous hemangioma to multiple sclerosis had to be treated right there. The width/breadth of the cases was just unimaginable—most urban Indians feel that poor people do not suffer from the Non Communicable/lifestyle related diseases like diabetes, hypertension and coronary artery disease. Here at Ganiyari each patient had a long story to tell—there were no common colds or constipation who could be sent off lightly; every patient needed all the resources we could muster. Over the years a lot of people have suggested cutting down on the numbers. In fact most non-Indians who have come and worked for some time are unable to understand why this cutting down is impossible. They don’t realize that numbers can be cut if these people have an alternative—in Chhattisgarh there is hardly any place that provides high quality care at such a low cost. Even JSS, that charges Rs10 (US $.20) for a visit is expensive for them. Patients take loans of Rs 20/30 and one such person walked 7 km to return a loan of Rs 13!! If you don’t see them today they will either go back home or keep staying at Ganiyari till he can finally get into the system. Sending them back is as good as a death sentence.  

In all these years I have stayed only once at Ganiyari—long ago when we had very few “pucca” houses—probably none, with a completely cemented roof. All ‘buildings’ had thatched roofs with lots of spaces wherein any lizard/snake could easily come through. It was rainy season and Yogesh told me about lots of “kraits” (one of the most poisonous snake in the world) in the campus, some of them falling from the top when you opened a door or a window. Snake bites were common, not only in Ganiyari but also in the surrounding villages and we would get 1 or 2 cases of snake bites every day in the emergency department. Yogesh and I were sleeping on separate beds (please dont get ideas!), not sleeping exactly as I could not even bat an eyelid while Yogesh slept peacefully. I was wishing I had eyes all round my head and on top too to be able to spot “one” when it came thru the door or fell from the roof!! I don’t think I have stayed over night after that – so much for my determination to “deliver.”

In these 10 years of my association with JSS I have probably seen over 400 patients with heart disease predominantly Rheumatic Heart Disease. RHD is among the lesser known cardiac disorders wherein a person who gets a sore throat by a specific bug (streptococcus) develops antibodies against his own valves in the heart that then gets destroyed. The disease is in some way linked to poverty and therefore is uncommon in the western world. The disease is mostly seen in children and young adults and leads to severe disability and death. Even though we can replace these valves by open heart surgery, the artificial valves are nowhere near the natural ones and need a very close monitoring, that is impossible for the poor. In the absence of an Electronic Medical Record system I have no idea of what has happened to over 300 of these patients, 30-40 odd of whom underwent a balloon dilatation at AIIMS by me and probably 10-15 have had valve surgery done. I only know about the small numbers who continue to follow up with me—what is happening to the majority, I have no idea. Progression of this disease can be halted by regular injections of penicillin but children obviously don’t want them and even for adults getting a shot every 21 days is not easy. With an EMR we could easily trace out the defaulters, get hold of the Village Health Worker who could then ensure better compliance. An EMR would be able to give me how much these people have spent over the last 5 years coming to Ganiyari, something that is so important for planning resource allocation. Over 60-70 of these patients are awaiting surgery but there is no program in the country that gives them early treatment. To convince the policy makers I need details of all these patients before I can tell them about how serious this problem is.

An EMR is a necessity today for every hospital. Even today, India’s premier medical institute, AIIMS, the so-called leader of medical care in India, doesn’t have a good EMR. It is very easy to manage finances, stores, purchases, even most laboratories etc, from commercially available software. The biggest challenge lies in digitizing patient records, be it in the OPD or in the wards. Given that we barely get five minutes to see a patient how can we imagine inputting the patients history, examination and management into a computer? The West and most of the private sector in India doesn’t suffer from these numbers. In addition, it is easy to get data entry operators, system administrators etc in cities but impossible to get them at Ganiyari. Even if we could get some people, medical records data entry is not easy because of the technical terms, that not everyone is aware of. So it boils back to the physician entering this data—the interface is critical to its success and as of now voice recognition (unfortunately still not perfect) may be the key.

The critical element of the EMR we are looking at is entry of medical records in a format that is easily and accurately stored and retrievable. It will help patient management, ease the work pressure by removing duplication of work and add to our knowledge of various disease aspects. The EMR has to be good enough to be implementable across the board to all health care NGOs and hospitals serving the needy in the entire globe.