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The National Consultant of Mental Health is a psychiatrist who had earlier been in the Army. He was not in his office. So I was taken to another room of another doctor working under the National Consultant. I was asked to wait for some time. After forty five minutes he spoke to me. When I asked him whether the prices of the drugs for treating major mental illnesses would increase he said that he did not know. I told him that presently, the wide range of affordable drugs were the only facility provided by the government. Probably he was aware that despite the Indian Disability Act 1995 wherein mental illness was included as a disability, the Government had provided no disability benefits, no disability insurance... the inclusion of mental illness as a disability was only on paper. He was very condescending. He said, ‘do you expect me or anyone to employ a schizophrenic with 40% disability? What will that person be capable of doing?’ I felt a surge of hopelessness - a doctor in the office of the National Consultant of Mental Health talking with such disdain! However I told him that I knew several people who were working where the employers had empathy and understanding. When I asked him what steps the government was taking to prevent the generics from disappearing from the market when the drugs were patented, whether newer enabling drugs would be available in India....he kept saying ‘next question’ without answering any of the questions. When I asked him as to who would give us these answers he said no one would because no one knew anything besides he was an ophthalmologist. He said that there was no point in going around and asking any clarifications. I would not get any. I felt horror when I heard those words.
I wanted to cry out aloud ‘Where should I go next? Please help me. Is there no one who cares for these people who suffer so much?’ I knew there was no point. I was at the wrong place. There would only be more scorn. Trying to stay calm I stood up to leave while the doctor looked at me across his table. I heard him speaking ...the budget for the National Mental Health Programme has been increased from Rs.19 crores to 190 crores. Mental health has become an important concern for the Government. We are developing I.C.E packages for bringing about awareness of mental illness in the community...’ What is I.C.E’, I asked? ‘Information, Communication and Education’, he replied. Who were involved in making these packages - I asked. He said psychiatrists and experts. ‘Were families also involved?’, I asked him. He thundered ‘do you doubt their expertise, their qualifications?’ I told him that perhaps he was not aware that most people with serious mental illness in India lived with their families. There are insufficient facilities for hospitalization even when the illness was acute. It was the families who took care of them. Families were the ones who constantly lived with the illness. Families could offer a wealth of information and contribute to these packages. He said, ‘why don’t you submit a proposal? We will look into it.’ I knew it was time to leave. To leave a room mired in insensitivity and apathy, inhabited by creatures of habit. I left the room with these unspoken words – ‘Breathes there a man with a soul so dead...’
I wish I had written more often - especially in the last three months. It would have eased the weariness, the anger, the helplessness and sadness within, which threatened to overwhelm me during this period. It all began when the patent ordinance was promulgated by the Indian government on Sunday, 26th December amending the Patent Act 1970, in accordance with the WTO (World Trade Organisation). The people of India were reeling then after the Tsunami’s fury. In January 2005, the Minister of Commerce said on television that 97% of essential drugs would not come under the ordinance. Only 3% of drugs would be patented, he said. My family started feeling uneasy and worried. Would drugs for treating schizophrenia be included in the 3%? The quest then began. I contacted the Ministry of Commerce and asked them for the list of 3% drugs which would be patented and the list of essential drugs which would not be patented. I was told to contact the Ministry of Industrial Promotion & Policy. They said they did not know and to contact Ministry of Patents. There I was told to speak to the Under Secretary, ‘the architect of the patent amendment’ as one of them said. The Under Secretary enthusiastically talked about patented software, patented detergents which would be cheaper and available to all in India. When I asked him about the impact on the prices of drugs he said, ‘Most people in India do not have enough food to live on. How could they think about drugs? Food is a far more important issue. Who will worry about medicines when they don’t have food? Have you thought about that...’ he went on and on. When I asked me to give me the list of drugs, he told me to contact the Health Ministry. The Health Ministry told me to contact the Drug controller of India.
The corridors of the building where the drug controller of India sits are dusty and daunting. I was amazed that this gentleman had agreed to talk to me for half an hour for mental illness is still regarded even by the most educated in India - as the result of moral failings or poor will power. Most people do not know that they are legitimate illnesses that are responsive to medical treatment. The drug controller fortunately was aware of the nature of these illnesses of the brain. However when I showed him the difference in prices of the generic drugs manufactured in India with the prices of patented drugs in USA, he was taken aback.(Patented drugs are upto hundred times costlier) The prices of the drugs in USA were mailed to me by a wonderful, understanding mother in Oregon who spent days on the road to get the prices of various second generation patented drugs. I had met this mother on this site and she understood so well our fears. However the meeting with the drug controller did not allay these fears. Although punctual and polite, he looked harried but gave some answers. He said that some drugs will become costlier ... Phase II and Phase I clinical trials are not being done in India... Government cannot buy patents unless there is a health emergency, otherwise it could get into litigation with the drug companies. He got impatient when I repeatedly asked him about the impact of the ordinance on the prices of drugs for treating serious mental illness. It was a strange meeting for a chord was struck when I told him that the legacy we wanted to leave behind was not the same as other mortals – we wanted our loved ones to have access to drugs that would enable them and reduce their suffering. He said that he had a relative who suffered from this illness. The meeting of half an hour stretched to an hour as we talked about a common struggle. I could gather that the pricing of drugs involved six ministries and there seemed to be a lot of confusion since the ordinance had not been tabled in parliament. He told his secretary to take me to the office of the National Consultant of Mental health which was in another room in the same building. This was during the month of January. I shall write about that later for its almost 2 a.m. today.