February 08, 2005

A long and lonely trek

It has been a strange year. I wonder if it is a portent of the things to come. More difficulties, additional worries for the future which is already so different from those by the 'normal' people and a sickening fear gnawing within me that those with major mental illnesses like schizophrenia will be banished forever into the dark fringes of society – a return of the Dark Ages of Institutionalization coexisting with the Silicon cities of India.

First, a newspaper report about the price of drugs which would be shortly patented in India appeared in January in ‘The Economic Times’ making us uneasy. This was during the same time when the people were reeling after the Tsunami lashed the coasts of India. The newspapers were full of the natural tragedy and most people missed out the ordinance promulgated by the Indian government amending the Patent Act 1970, in accordance with the WTO (World Trade Organisation), which seriously compromises the accessibility and availability of medicines, two important components to the right to health. The Indian government is going to trade away its rights to protect the public health of people who need access to low-cost, presently available generic medicines. The introduction of a patent regime will also reduce accessibility to new drugs.

As a signatory to the International Covenant on Economic, Social and Cultural Rights (ICESCR) and the Doha Declaration on the TRIPS(Trade Related Intellectual Property Rights) agreement and Public health(November 2001), the government of India is obliged to implement the TRIPS Agreement in a manner, which is supportive to access to medicines for all. Drugs for major mental illnesses are the cheapest in India compared to the rest of the world. Indian drug companies have produced generic versions of all the atypical antipsychotics at relatively low prices compared to prices in USA. This has enabled affordability and accessibility of drugs to all with major mental illness including in government hospitals.

In a country like India, there are over twenty million people with major mental illnesses and more than 70% of them live with their families. The family is the backbone of support and care. Any policy affecting the treatment and healthcare of those with mental illness will also affect the quality of care provided by the families to their loved ones. India is a poor country and people with major mental illnesses in India, have no Disability Insurance or Benefits, no Medical Insurance cover-unlike cancer, no Government programs like Social Security Disability / Employment/Insurance, no Sheltered, Transitional or Supported employment, No Clubhouses for Social Rehabilitation/not enough Mental Health Facilities for hospitalization, few crisis intervention centres and now - no choice for a drug that is crucial to control their illness because they will no longer be affordable. Even Military hospitals do not have provision for admitting women with psychiatric disorders. There are ‘no beds for female psychiatric patients'. The burden of taking care of a family member during acute periods of the illness lies with the families.

The steep rise in drug prices and the consequent inaccessibility of these drugs will lead to those suffering with no alternative but to take the older drugs outside the patent regime. Most families will no longer be able to cope and take care of their loved ones. There will be increased homelessness and suicide. Large numbers will have to be institutionalized. Where I wonder - when there are insufficient mental health centres for taking care of those with acute symptoms?

Imagine what a future we will be leaving behind for our children if they have to take the older alternatives. As it is they suffer so much with this illness and being deprived the right to take a drug which suits them and a drug that could cure them in the future - will enslave them forever to this illness and make them so much more disabled.

Families in Bangalore, more aware of the impending crisis are gathering together - for they have chosen to speak up for their loved ones. As for Delhi, where so much can be done, the curtain of stigma still envelops most families wherein a loved one struggles with schizophrenia or other major mental illness. Like the fog of the winters of Delhi, most prefer to hide behind the façade of normalcy and denial. Most of those that are aware of the nature of the illness prefer to be isolated from such issues. The rich will not be affected as they can afford the high drug prices, the middle class cannot believe the government would do such a thing, so they go about being busy with a false heartiness and the poor do not know what is happening to them for they are already staggering with the vicissitudes of life. NAMI Delhi chapter when contacted for help says it’s new, so contact Mumbai and it only plans to start Yoga classes in the future. For whom I wonder?

It is a lonely trek for some families who want to leave behind a future of - a right to health and dignity for a loved one battling schizophrenia. Trying to keep alive the fervent hope within, that future modern science will bring forth a drug that could cure schizophrenia which their loved ones struggle with. To prevent the drug that enables them - from becoming unaffordable and inaccessible. I know now that it is an uphill, long and lonely road.

Posted by survivor at February 8, 2005 11:34 PM


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