WALKING WITH + Ves
It was a Sunday and around 3.45 p.m, my white Qualis screeched to a halt near a shop a Chathanoor on the NH47. The shop had an attractive array of toys ranging from Spiderman to Donald Duck, sure to kindle the child in you..The toy display drew my colleague and me in. Of course, we had a purpose in having a closer look at those toys. With hardly any hesitation, we picked up a cute duck and scruffy hare. "Rs. 40" the shopkeeper said in a rather gruffy voice, when asked for the price. What followed was a bout of haggling over the price. Preferring to leave the job to my colleague, I walked towards the car.
Minutes later, may colleague joined me with a sparkle in his eyes. For, he had with him the duck and the hare and two colourful balls as well. Sensing my quizzical look at the extras he had with him, he hastened to explain that the balls were gifts, courtesy the shopkeeper. "While bargaining with him, I just made a casual reference that two hapless children were in dire need of such toys. He immediately asked me whether it was for Bency and Bensen of his native Chathanoor village. He gave two colourful balls as his contrbution. The magnanimity of the shopkeeper, who was curt just minute ago, convinced me that the fountain of compassion and love for two forsakened HIV + children was not dry after all.
A 15 minute drive took us to Bency and Benson’s residence. We were pleasantly surprised to see the local Parish Priest and two young men at this otherwise desolate and gloomy house of the late K. C Chandy. For sure, there was a marked change in the atmosphere. During my visit, on May 14, 2003 hardly anyone took notice of the presence of senior Government officials who spent three hours on a mission of purpose. The mission: to ascertain the welfare of Bency and Bensen, the two innocent children who were denied of their fundamental right to education, just because they were HIV + Ves and children of two human beings died of HIV AIDS recently.
No doubt, it was a painful, yet purposeful visit. It was painful because the candid statements of the aging maternal grandparents, the sole refuge and shelter of the two kids, moved us. Yet, it was purposeful because it enabled us to chalk out a strategy to take care of the stigmatized children. “What on earth did these children do? Why are they being denied education? Why do the looked down upon? Why are parents of other students in the Kaithakuzhy Government Lower Primary School vehemently oppose their presence? asked the virtually blind grandmother. She narrated the turn of events. “My only daughter, Princy, was married to Chandy, who hailed from our village. He had been working in Mumbai since mid 80s and the first child died of HIV AIDS, when she was only 31/2 years old . Chandy, who returned to his village, settled down by building a house and opening a ration shop. In December 2001, he died of HIV AIDS. But he bequeathed his infection to his wife and two children. For, Princy too soon walked into the death’s claws. what sin did my daughter commit to suffer such an untimely and cruel death? the grandmother, Sally, veiled. Chandy married Princy knowing fully well that he had HIV infection. Non one suffering from such an infection should marry a hapless girl and infect her,moaned the old woman.
Death was cruel for her daughter, because society looked down up on her with stigma. She was almost ostracized, before death saved her from more excruciating pain. As is the case with all people living with AIDS, Princy too succumbed to her infection in 2001, leaving behind Bency and Bensen. But tragedy continued to haunt Benny Bungalow. For, the two kids were also diagnosed positive for AIDS. Once friends, relatives and neighbours got wind of the Chandy's infection, they started boycotting the two kids and their grandparents.
Life became rather difficult for Bency and Bensen when their story came under Media glare. One school after another shut its doors firmly on them. Parents of Kaithakuzhy Government Lower Primary School, where they were initially admitted, refused to send their wards to school and vociferously demanded the kids’ ousterA meeting was held in the school on March 4 2003 to resolve the issue that had become quite knotty by then. A few did sympathize with the childredn; but none came forward to lend them a helping handOur May 14 visit had its effect. The two children were immediately put though the paces of medical tests. They are now under the treatment of Dr. Noel Naryaanan, one of Kerala’s well-known pulmonologists. The words of Dr Narayanan, who examined the two childredn with his bare hands, were quite revealing “HIV\AIDS doew not spread be it through sitting, sharing, eating, playing, studying or other associations with the infected”, he had opined. For a moment, another small incident came as flashback – July 27, 2003, the day I visited the Marthoma Church, nestled in the Chathanoor hamlet (The kids belong to this Church). I was asked to say a few words after the Parish Priest, who himself was standing in for his colleague, gave his sermon.I appealed to the congregation to show compassion to the two children. “Stigma and segregation are not part of the teachings of Jesus Christ and there is no point in remaining a Christian, Hindu or Muslim by name,” I said inviting their attention to what Christ said at the time of his crucification –“O Lord, They know not what they do. Forgive them.Requested the gathering to be compassionate and treat the kids with love because Jesus Never Fails (GOSPEL??) and advocates for sympathy and love to those who suffer. I called upon the faithful to take care of these hapless children and see that they continue to be part of the community. I urged them to follow the teachings and preaching of great saints/apostles/sons of God/Messiah so that all of us could be real and good human beings.Honestly I never thought my appeal would have an affirmative impact in the young and the old alike who had assembled there. The responses assured me of the proverbial beacon at end of the tunnel. The day’s happenings left in me a deep conviction that sensitive issues can be settled if delicately handled. Coming back to our current visit, we spent some time with the children, their grandparents, the Parish Priest, and other members of the church and some youths of the village. The children were naturally overjoyed by the gifts they received.We stirred out of Benny Bungalow half an hour later for a stroll around the village. Alongwith us were Benson and Bency, their grandfather, Parish Priest and two youngsters from the congregation (Incidentally, one of them is a teacher who had taught these children in the Parish Nursery School). Abraham Mathew, Project Director, State Management Agency, Kerala, District Mass Media officer anil Kumar and his driver Vijay Mohan Pillai. Of course, the stroll, a Padayatra of sorts had a purpose. Our aim was to make the local people realize that there was nothing wrong in walking alongwith people living with AIDS, eating with them, visiting them and playing with them.There were not many people around when we headed for the narrow village streets. But as we walked along the road, quite a few come out of their homes, talking in hushed tones about the +ve children. The progressive among them promptly responded to the Parish Priest’s invitation to join the walk. Some merely smiled and weakly stated they were otherwise preoccupied. A few college going girls joined us in our walk. And as we wandered through the Chathanoor lanes, the assembly of people grew in size.Bency and Benson are attracted to Vijay Mohanan Pillai the Driver. Naturally so, because he has been their escort tot the doctor, the clinic, the beach, the park, and for their shopping. Pillai gets the kids whatever they want, be it pens, tops notebooks, or ice cream. He drives them around as if they were his own children. I am tempted to callhim the Saviour, because of his rare commitment. The devotion he has taken up this self imposed assignment and his compassion can not be narrated in words. Will there be many more such noble souls to work for the sick and deserted.Our walking with the +ve children has made us realize that the people of Chathanoor are not all that bad as depicted. It convinced us that they would collectively whether the storm and take care of the children if given a chance. We are confident that the children would be able to break the barriers of stigma, given the present for Bency and Benson, help them get re-admitted to the same school that threw them out and demonstrate to the outside world that Kerala is God’s own country in its truest sense.Given the sentiments of love and hope that pervades this hamlet, we are secure in our sentiments that Bency and Benson would live longer than expected and that in the next few years a vaccine would be invented for curing HIV/AIDS.Then, the millions of orphanded children like Bancy and Benson could live and lead a normal life, bereft of stigma, exploitation and denial of fundamental rights.
BRIEF SKETCH OF THE DOCUMENTSRY
Subsequently, actor Sh. Suresh Gopi oined us on Sunday, the 12th October, 2003 another day (13.10.2003). Subesequently, during his visit to Kochi, I was asked to take the children to H.E. the President of India .He briefly met the children and appealed to all (at a subsequently meeting in Kochi) to show love and compassion to Benson and Bency
Mrs. Sushma Swaraj, Union Minister for Health & Family Welfare who visited Trivandrum wanted to meet these children. I took these children to her and suggested that GOI should have programme for treatment of HIV/AIDS patient. She announced at the press conference at the Press Club, Trivandrum that Government of India would provide for anti retroviral drugs HIV/AIDS patients. She also announced that the Hindustan Latex Lted would extend financial assistance to Benson & Bency for their treatment during the next 5 years to the tune of Rs. 3 lakhs. The M.D of HLL handed over a cheque for Rs. 60,000 (amount for the treatment for the first year) at the birth day party of Benson & Bency on at--------- at the public function organized in Adichanalloor village. As per the announcement made at the Press Conference, GOI are supplying anti retroviral drugs to high prevalent statesPHOTO OF SUSHMAJI KISSING BENSON All my individual efforts with the active support of some of the members of staff DMO, and the local people have finally yielded results. Benson & Bency have been readmitted into the school in December, 2003- in 9 months from the day they were thrown out of Govt. L.P. School KaithakuzhyLetter from the Secretary to the President of India.
My five year tenure as Secretary ( Health &Family Welfare) and then as Principal Secretary during 2001-2005 was varied , interesting and most challenging. It was an assignment that gave me immense satisfaction and enabled me to learn alot about health related issues and make rich contributions for the health sector of the state.
From the beginning of my stint, I started taking regular review meetings with Heads of Departments, Programme officers and my staff in the Department. In certain cases, I used join the Heads of Departments when they were taking monthly review meetings.It enabled me to have first hand knowledge as to what was happening in the field and what remained to be taken up on a priority basis. It enabled me to initiate advance action against monsoon - related and seasonal out -breaks of communicable diseases, ensure preparedness of the Departments concerned for any major casualty. It also enabled me to identify the missing crucial links in the system.
Dengue Outbreak & Control
In August 2005, the state was realing under a Dengue outbreak and deaths were mounting. Every death, even ordinary death was attributed to Dengue. We immediately called a meeting of the the Head of the Department of Community Medicine of the Trivandrum Medical College to understand the gravity of the situation and worked out a strategy to address the problem squarely. We launched an awareness campaign by giving talks over the television, Radio, Press and launched door to door campaign. We used the school choldren to carry home the messages relating to " Dos" and "Donts". All the hospitals were asked stack test kits and emergency medicines. The Medical Colleges were asked to adopt the most affected villages by this out- break. We requested all the local bodies to focus on cleaning up their clogged drains,waste dumps, backwaters- the source of dengue larvae breeding. These efforts and the commitment shown by the doctors and paramedics enabled us to bring the outbreak under control.
Facility Survey
In order to fill up the critical gaps in any instituion, a "Facility Study" ( of infrastructure,man power, equipment, drugs,beds & furniture,water,drainage etc) is essential. With this in mind, facility surveys were conducted on a war footing against a blue print prepared by experts.This was published as a book titled "Instituion Analysis".
Essential Drug Lists & Drug Procurement Policy
When I joined the Department, almost all Malayalam dailies flashed news repeatedly that there were no essential drugs and even dressing materials. I went into the issue and realised that the Directorate of Health Services had not settled biils for the supply of drugs supplied during the last two years and that amount had mounted to Rs.35 crore. On top of it , the DHS required allocation to the extent of Rs.65 crores for every year. I took it up as a priority item and moved the Finance Department, which released funds in 3 instalments. Once, we got over the pending bills, we thought of ensuring availabilty of Essential Drugs in all the hospitals, for which we had to come out with Essential Drug Lists for Primary, Secondary and Tertiary Hospitals. An expert committee was constituted and Essential Drug lists were prepared and after getting Cabinet approval circulated to all the instituions.
PHOTO OF ESSENTIAL DRUGS
In order to ensure transparency and quality in the procurement of drugs, a Procurement Policy was prepared and Cabinet approval was obtained. This became handy for the DHS officials concerned with procurement of drugs and supplies to ward off complaints.
Rural Service & abolition of Liquidity Damages
Kerala is known for 100% literacy but was poor in public health facilities for want of adequate resources and lack of technical manpower. Most of the doctors and paramedics, who gained their degrees/diplomas at the cost of exchequer flew out of India for better pasture and as a result there were many vacancies across the state. There was a ban on recruitment as well. It affected health delivery. There were only two options before us - one, to deny leave for taking up jobs outside the state and two, to make rural service compulsory for those,who pass out of the Colleges with an MBBS degree. This move resulted in a lot of furore amongst the staff; but we put our foot down and said no. Moreover, the question of "Liquidity Damages" was done away with.
Private participation in Medical Education
At the time of assuming office as Secretary ,Health, there were only 5 Govt Medical Colleges, two Dental Colleges and few Nursing Colleges in the State. The number of MBBS seats totalled upto 900 and there was heavy competiton amongst students to get into anyone of the Medical Colleges in the state. Kerala parents would not mind selling their properties to educate their children. When their wards could not make it into the local Medical Colleges , they admitted them in the colleges in the neighbouring states paying hefty capitation fee. During one of my trips to the Ministry of Health , I discussed with Mr.Rao, Director in charge of Mediccal Education and asked him the way to go about to set up Medical Colleges in the private sector in Kerala. Of course, Kerala politicians would detest anything that is private . Of course, there have been lot private management run colleges of Arts & Sciences. On return from Delhi, I initiated a put up a note to the Chief Minister for orders. The initial response was "No". However, my logic was appreciated when I circulated the second note. We, therefore, issued a press release calling for applications for setting up Medical Colleges in the state.We got about 42 applications and on scrutiny with reference to the Medical Council Regulations, it was found that only 7 of them had the where withall to start a medical college the same year ie 2002.
When the issue came up before the Cabinet for consideratuion, I was called in to explain the logic and I did to the satisfaction of the Cabinet. It gave its not for consideration of all the 42 applications and issue Essentially certificate. I though it was a wrong move. Only subsequently, I realised that the Cabinet, in its collective wisdom took a practical decision. They knew pretty well that if only few were given and the others were denied, the decision of Govt. would be stalled by filing Writ Petitions. The same year, Amrita Institute of Medical Sciences,Kochi opened the first ever Medical Ciollege in the private sector. Now, few batches MBBS students have come out of this institution and it has also started offering P.G Courses. In the next few years , another 8 colleges sprang up making available 800 seats.This has provided lot of relief to the parents of chidren,who are intelligent but could not go out of the state for education .Of course, commercialisation by all these instituitions belied our hope and instructions. The plus points of this opening up of Medical ducation for private participation are that specialty care is available to all those who could afford, lot of infrastructure came up besides commercial establishments . It also provided for lot of employment opportunities for both skilled and semi skilled labour.
Setting up of Paramedical Council
The services of Paramedical Staff is inevitable for health care delivery. But, unfortunately, the instituions that impart paramedical courses are not regulated and the personnel who come out of sizeable number of instituions are poorly trained and they play havoc with the lives of patients. Kerala was the first state to set up the Paramedical Council in India. I provided leadership in setting up this council to regulate paramedical instituion.
Telemedicine & CArdiac Emergency Hospital at Pmapa
Sabarimala is a pilgrim centre in Pathanamthitta district of Kerala. Located amidst forests, it has no medical facility worth mentioning for the lakhs of pilgrims, who throng the hills for darshan of Lord Ayyappa. I had the fortune of serving as Special Officer,Pmpa during my Adoor Sub Collector days. As Secretary, Dept.of Health & Family Welfare, I arranged for first aid posts, a Govt. run Hospital at Pampa and presssed into service lot of doctors and paramedics. In addition, I approached the Director of ISRO Dr.Madhavan Nair and appealed to him to station a telemedicine unit at Pampa so as to get tele consultation with specialists from Super Specialty hospitals in other parts of the state. He readily obliged. I also approached Amrita Institute of Medical Sciences,Kochi and also the Apollo Group of Hospitals, Chennai for their support. Amrita Institute of Medical Sciences responded the same year by establishing a 10 bedded cardiac emergency hospital and Apollo Group followed their steps next year. Since then, bith these institutions run cardiac emergency hospitals at Pampa, which are beneficial for the devotees.
Tsunami and the relief Operations
ON 25 December,2004 Tsunami struck the coastal belt of Tamil Nadu Kerala. The coastal belt from Trivandrum to Alleppy was the worst hit. We set up a round the clock Control Room and monitored the situation. I had instructed the DHS And the DME to press into service their doctors and paramedics and render relief on a war footing. The Medical Colleges were asked to send teams of specialists and paramedical staff to the affected areas well within their district. District Medical Officers and the Principals of Medical College were asked to draw medicine from their stores and buy from the open market in case of need. The local private hospitals were requested to offer medical services to those who were affected and Govt. undertook to settle the bills. Ambulances carrying doctors, paramedics and emergency medicines and equipment were asked to patrol the area and render services. The Secretary of the State Mental Health Authoriyu was asked to send Psychiatrists to the relief camps and asked to offer counselling. As suggested by me the Cabinet despatched senior Secretaries, who had workedd in those disricts to oversee relief operations and take on the spot decisions and help the District Collectors in carrying out effective relief operations.
A Fight Against Stigma
The Govt in general and the Health department in particular was shocked, when the news broke out that Benson and Bency , HIV-infected siblings of Chathannoor Village had been thrown out of the local Kaithakuzhy Lower Primary School and were forced to confine themselves to their home because of their HIV status . The efforts of the state machinary consisting of the Secretary , School Education, Director, Kerala AIDS Control Society and the District Collector,Quilon to allay the fears of the parents of the children studying in the school and the local panchayat did not yield results. These two children were virtually ostracized by the entire village community which also trampled upon their fundamental right to education.
Parents did not to want their children to share the classroom with Benson And Bency and the Parent Teachers Association voiced exaggerated fears of a risk of HIV transmission from these siblings. Exposing the deep-seated stigma that hounds HIV-infected victims, belligerent parents threatened to withdraw their children from the school if Benson and Bency were in.Eventually, the school gates slamed shut on the children.
Deprived of their fundamental right to education, the orphans, who are under the care of their grandparents, were forced to remain at home. Having found that my colleagues could not succeed in their attempt,I entered into the frey even though AIDS Control was the subject handled by Secretary ( Family Welfare). I made it a point to spend weekends with the children, invariably taking them for a stroll on the streets. My efforts to erase the stigma that surrounded them paid dividends. The following unpublished article written " Walking With +Vesby me would throw some light on my efforts to fight the stigma.
WALKING WITH +ves
POSTER ( FILM TO BE POSTED)