This post covers the 10 days I spent in Rajasthan in Nov 2014 doing the Indian Mid term national leprosy evaluation with other leprosy experts Rajasthan reports about 1000 new leprosy cases each year and so is regarded as low endemic in India and as having “eliminated leprosy as a public health problem”. Paradoxically if Rajasthan were a country it would be regarded as needing special input for its leprosy programme by WHO. We were in teams of 6 and other teams visited Andhra Pradesh, Assam, Haryana, Delhi and dadar Haveli, Harayana, Uttar Pradesh and Maharashtra. We had been briefed in Delhi and given a very detailed evaluation tool to asses different aspects of the programme. We were specifically told not to look for misdiagnosis.
I had interesting team members, Suarav Jain was the youngest and working with the WHO programme in Delhi on vector borne diseases and NTDS, he has worked on leprosy in Bihar, Surath Solanki is from Maharashtra and was previous head of health for Maharashtra, he is experienced in administration and health systems, Dr Thakur is also based at WHO and has worked in leprosy for years, he is an avid leaner, doing numerous online courses on his iPad. Dr Ashok Saxena is head of Dermatology at one of the big hospitals in Delhi and has experience with leprosy and yaws, the sixth member was Dr Vijaykumarn who worked for the Damien Foundation in South India and is now working part time for Lepra-India. Between us we covered a wide range of leprosy expertise. Ashok, Saurav and myself went to Udaipur whilst the other three went to Jodhpur. We had 10 hour train journeys in both directions and then a lot of travelling by vehicle around the beautiful Rajasthan countryside with rolling hills alternating with semi-arid conditions.
We visited a range of clinical and hospitals where leprosy patients were being treated so is a cross-sectional snap shot of leprosy work in Rajasthan. What we found was a small programme which is just ticking over, diagnosing and treating 1000 pts/yr and that there had been a serious loss of clinical skills in leprosy and a the programme was now low priority.
Pappu (32 yr), the patient we saw in a tiny rural PHC encapsulated many of the problems in the programme. The Primary Health Care Centre was a very poorly organised single room with a jumble of medicine boxes on the shelves. He had polio as a boy and then developed leprosy 18 years ago and developed neuropathic hands and feet with severe clawing of the hands and an ulcer on his foot, his leprosy had only been diagnosed this year and he had been started on leprosy MDT treatment, and so far too late. He had Borderline Tuberculoid leprosy years ago and these problems could have avoided with good disability management. it is a v poor reflection on the programme that he has such severe nerve damage. He had not had proper nerve assessment no-one cared about his nerve damage and he had not been told how to avoid trauma or even given dressings. Before we left someone had arranged for him to have a bandage for his foot.
This patient, Pappu then became the touchstone for our future discussions, how can we ensure that patients like him are detected sooner and have their disabilities managed to prevent further damage. We also saw a man with advanced Lepromatous Leprosy and nasal collapse in the same clinic and patients with undiagnosed erythema nodosum leprosum elsewhere. These patients show that there has been severe delay in diagnosis.
Visiting the Udaipur city leprosy clinic was depressing, the building was 180 years old and hidden behind the vaccine programmes building and with abandoned, decaying government vehicles there, one with branches growing through it. There were many Prevention of Disability posters clearly put up for our arrival and then used as wallpaper inside to cover the cracks. The staff here had not been trained in neurological assessment did not understand the WHO grading system for disability (including the District leprosy Officer). They had no records for how their MDT was being dispensed and were not using prednisolone to treat reactions and nerve damage. The day ended with a dramatic storm and water flooded down the walls and the posters peeled off, even though I had been assured 30 mins earlier that these old buildings were sound.
We also visited the medical school and district hospitals. They see lots of leprosy patients here with reactions and ENL but the records were poor and there was little communication with the leprosy programme. Elsewhere we found patients who did not have leprosy but were still on treatment.
Interviewing patients in the PHC was a positive experience because and they were obtaining their MDT close to home, often given by the Acredited Social Health Activist S. The ASHAS seemed bright and engaged, but they are also paid an incentive for diagnosing leprosy patients. When we gave feedback to the state officers and collectors they were very keen to promote health education about leprosy.
After 5 days in the field we met back in Jaipur. The Jodhpur team had similar experiences findings; they also visited a leprosy colony and found it functioning well and the inmates wanted better education for their children. We presented our account and recommendations to the state rural health mission chief medical man, which I did in English with Hindi comments from the other team members. He promised action especially on training, we then impressed a dynamic young Indian Administative Service man in charge of Information Education and Communication IEC) who immediately identified 3 lakh rupees in the education budget to be used for traditional and electronic IEC actives. Two goals for our team! We were a good team, Ashok and Vijay were good at information gathering, SJ and Thakur at analysis , me at presenting and Solanki at speaking the same language as the administrators. I hope that the budget will be really used for leprosy activity and not diverted elsewhere. We then went off for a celebratory lunch of Jaipuri chat and thalis with ladoos, hard dumplings instead of chapatis.
Other conversations about medicine and philosophy
We had other conversations during our long drives across the countryside
Saurav J and I had an interesting interlude when we visited the Vector borne disease state office, to discuss the mass campaign giving albendazole to treat and eradicate Soil Transmitted Helminths in Rajasthan, but they had sent their Albendazole request in far too late. They had requested syrup, easier to give but the drug has poor bioavailability in syrup and is not recommended by the vector programme. The Rajasthanis now had a surplus of syrup which they had given to other state centres to use. There is no Indian data the prevalence of helminth infections in India and so no way of assessing the effectiveness of this intervention. A national worm survey is being planned pre Mass eradication but there is a shortage of good lab technicians to do the survey. These are all interesting ethical and managerial programme complexities.
We also talked about the Indian Visceral Leishmanisis programme and patients are now being treated with a single high dose of Ambisome, 10mg/kg with a 95% cure rate. The case load is also coming down. Miltefosine is little used. The susceptibility of the Indian parasite to Ambisome is extraordinary and a benefit.
Ashok, is head of Dermatology at a teaching hosp in Delhi and has a faculty of about 35 and lamented that the younger dermatologists are not interested in general Dermatology, making money with cosmetic procedures is far more appealing. It is extraordinary to see a specialty being completely changed by money when skin problems are so common and often part of wider diseases. It will also be difficult to reverse this trend.
My Anglican priest godfather died whilst I was in Udaipur so I left flowers for him in a Hindu temple. We had many conversations about death and reincarnation and the Hindu philosophy on this. I remained unconvinced and comfortable with my atheism.