Eliminating the poor

The Hindu, Sunday Magazine, June 26, 2011

THE OTHER HALF

KALPANA SHARMA

The Emergency, declared 36 years ago this day, impacted the poor in more sinister ways than any other section of society…

Photo: C.V. Subrahmanyam 

Denied choice?

June 26. Just another day for most people. But for those who lived through the 1970s in India, June 26, 1975, was the day the Emergency was declared. The rights we take so much for granted — freedom of the press, freedom to publicly articulate our opposition to the government, freedom to hold rallies and dharnas and fasts — were suspended. Till today, that period of 20 months remains a blot on India's democratic record.

The impact of this suspension of freedoms differed according to your class and status in life. For the people at the top, barring those in the political opposition, it made little difference. If anything, it increased their power to act with impunity. Much of the middle class approved. Trains ran on time, workers were not allowed to strike, the streets seemed to be cleaner etc. If all newspapers sounded suspiciously similar due to censorship, they did not notice or care. But, for the poor, not only was their voicelessness accentuated but also the history of the atrocities perpetuated on them in the name of ‘national interest' could not be recorded or reported.

Echoes from the past

Some of this came to mind when I read a story on the BBC website titled, “Sterilisation: North Carolina grapples with legacy”. It is hard to believe today but, right up to 1979, a policy was in place in states like North Carolina in the U.S. that justified forcible sterilisation. Beginning in 1907 in the state of Indiana, and thereafter adopted by 31 other states, an estimated 60,000 people were sterilised, most of them against their will. It was population control of another kind, specifically aimed to ensure that the poor and mentally ill did not reproduce.

According to the BBC report, the sterilisation programme was “part of a broad effort to cleanse the country's population of characteristics and social groups deemed unwanted”. Those who had to undergo sterilisation included women who were considered sexual deviants, homosexual men, the mentally ill, poor people, African Americans, Hispanics and juvenile delinquents as well as criminals.

This horrendous policy has once again become a talking point with the recent decision of the state of North Carolina to set up a special task force to trace the victims of this programme. They estimate that around 2,900 victims might still be alive. The state plans to offer all these people monetary compensation.

Certainly, no one in the U.S. today would contemplate such a policy or justify it. Yet in 1927, the U.S. Supreme Court actually upheld the law in a case involving the sterilisation of a woman considered “feeble-minded”. Judge Oliver Wendell Holmes Jr., who was part of that decision, wrote, “It is better for all the world if, instead of waiting to execute degenerate offspring for crime or let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes” (Buck v. Bell).

India's forced sterilisation policy during the Emergency might not have been specifically targeted as was the policy in the U.S. but it could be seen as a way of dealing with poverty by restricting the birth of more poor people. It led to thousands of poor women and men being forcibly sterilised in the name of population control.

Little of what happened then was recorded as the press was fettered. But in later years, some stories were heard and retold. One of these records is the striking film “Something like a war” made by Deepa Dhanraj. The film reminds us of the mass sterilisation campaigns of the Emergency. But even more disturbing are scenes that suggest that the policies continued even after the Emergency had been withdrawn. One of the unforgettable scenes in the film shows poor women being lined up like cattle, with numbers stuck on their foreheads, as they wait their turn to have a tubectomy. The question of informed consent did not even arise.

The forcible sterilisation campaign was based on the premise that these women had no control over their own lives. Thus it was better that the State intervene and decide how many children they should have and permanently eliminate the possibility of their having more than the required number. Needless to say, no thought was given to any medical complications arising out of this assembly line approach to sterilisation. In a country where basic health services remain out of reach for a large majority of the poor, such callousness resulted in women dying of complications that remained unattended. But no one cared. One more poor person had disappeared, and with her the possibility of additional hungry mouths that would have to be fed.

Impossible here

While North Carolina is trying to trace the victims of what is now accepted as an unjust policy, it would be inconceivable that something like that could happen in India. To begin with, the numbers are mind-boggling. And in any case, those who formulated the policy never accepted that it violated women's rights.

These days, ‘reproductive health and rights' is the official approach and policy. Yet, even today, we hear of poor women being talked into giving their consent to be sterilised after they have had two children. Some of them might well want this, as they do not have the power within their marriages to insist on the use of contraceptives. Yet just because these women are illiterate does not mean they do not have brains, that they cannot understand what is being done to them. Surely, they too have the right to know, to understand, and then to decide. It is the assumption that someone else — the government official, the medical professional, the middle class person — knows best what is good for ‘them', the poor, that needs to be eliminated.

The Emergency was mentioned more than once in recent weeks when the Delhi police cracked down on Baba Ramdev's followers at the Ramlila grounds. But the real horrors of that period have still to be recorded and told. And on top of that list must stand the cruel and inhuman policy of mass sterilisation.

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Too bitter a pill to swallow

The Hindu, Sunday Magazine, June 12, 2011

THE OTHER HALF



Falling ill is precarious business anywhere in the world. But in India, if you are poor, or live in a village, overcoming even routine illness can sometimes become an insurmountable hurdle. First, there are few health facilities within reach. Those that exist are ill equipped. Doctors don't come. Medicines are not available. Even if you somehow make it to the nearest district hospital, there is no guarantee that you will be treated. And if you seek private care, something 80 per cent of Indians are forced to do, you will end up permanently in debt. Most Indians have no health insurance.

Better than nothing

In such a situation, if someone approaches you and says they will actually pay you if you agree to take a new treatment for an illness that you have, most poor people would agree. What harm can it do? Often doctors, in whom the majority of patients put their complete trust, endorse the trial.

But harm there can be, and is possible from participating in what are ‘clinical trials' where new drugs are tested for their efficacy on humans. And despite regulations, codes of ethics and monitoring, every now and then we hear of people who die during these trials.

Last year, an intervention by a women's health rights group, SAMA, exposed the manner in which a study, where tribal girls between the ages of 10-14 years in Andhra Pradesh and Gujarat were given the Human Papilloma Virus (HPV) vaccine that prevents cervical cancer, went horribly wrong. Seven girls who received the vaccine died. Their parents believed the reason was adverse effects of the vaccine (see The Hindu, Sunday Magazine, April 18, 2010). The SAMA report prompted the Central government to set up an inquiry committee to look into the study and in the meantime asked that it be suspended.

The report of the government committee appointed on the HPV vaccine study was released in February this year but became public only a few weeks ago. Although it concludes that the seven deaths were “most probably unrelated to the vaccine”, it also adds that “the cause of death in all the cases cannot be established with certainty.” And as for violation of ethical norms, it observes “several minor deficiencies in the planning and conduct of the study”.

However, it is these so-called “minor deficiencies” that can sometimes make the difference between life and death for people who are already vulnerable. In the case of these tribal girls in Khammam district in Andhra Pradesh and Vadodra district in Gujarat, the deficiencies included the absence of “informed consent” (the consent forms were signed by hostel wardens instead of the parents of the girls being informed and their consent sought). Furthermore, a proper procedure to monitor the health of these girls for adverse effects was not in place. This is particularly important as most of these girls were already undernourished. The committee's report notes that there was no uniform reporting system for Adverse Events Following Immunisation (AEFI), which included nausea, vomiting, diarrhoea and abdominal pain as well as giddiness, jerky movement and neurogenic shock. Worse still, the girls had no health insurance cover for treatment in case they fell ill on being vaccinated.

Consent by proxy

Although the committee does not indict either the drug company or the organisation that conducted the study, and also concludes that the inclusion of girls between the ages of 10 and 14 was justified given the nature of the drug, it has questioned the “legality and morality” of the circular from the Andhra Pradesh government permitting hostel wardens and head masters to sign the consent forms on behalf of these girls without informing their parents. It has gone further by stating: “The committee stresses that everyone shall desist from research on tribal population, unless of specific benefit to them.”

The HPV vaccine controversy draws attention to one aspect of clinical studies and trials, how vulnerable groups are roped in without proper consent and without health support in the event of problems. In this case, the connection between the vaccine and the deaths could not be conclusively established. But even where it is, the companies try and get away without paying compensation.

On June 6, newspapers reported that the Drug Controller General of India (DGCI) had summoned nine drug companies who conducted clinical trials that led to the death of 25 people. According to the DGCI records, last year, a total of 670 people who were part of clinical trials died. But the death of only 25 could be linked to the drugs. Of these, only five families were compensated within a range of Rs. 1.5 to 3 lakhs.

This news item gives us a small window into the ‘industry' of clinical trials in India that is worth millions of dollars. It has been clear for some time that these trials need to monitored much more closely. Some of this kind of scrutiny is taking place. Apart from official bodies like the DGCI, there have also been some independent studies. One of these, by Sandhya Srinivasan titled, “Ethical concerns in clinical trials in India: An investigation” for the Centre for Studies in Ethics and Rights, is particularly instructive. Ms. Srinivasan has looked at the trials of three drugs, a drug to treat breast cancer and two drugs for psychiatric conditions. Many of these drugs are expensive and it is tempting for those with terminal conditions, like cancer, to agree to be part of such trials. The report reveals the many loopholes in the rules and regulations that allow drug companies to appear to be sticking to the letter of the law while violating the spirit.

Going unnoticed

The ethics of human clinical trials is a complex subject that requires more space to discuss than is available in this column. But the two developments – the report of the government committee on the HPV vaccine and the DGCI's intervention on the question of compensation for trial related deaths – illustrates how so many things remain hidden until there is a crisis, or some independent group investigates. The problems remain hidden particularly when the people involved are the voiceless, like the young girls of Khammam district. Had it not been for groups like SAMA, perhaps no one would have ever known about what was going on.

This is not to say that new drugs should not be developed to combat disease. No one questions the need to test these on humans before they are licensed for use. But the process of certification of their safety should not lead to death or disability of those who are part of the trials. Nor should the precondition of consent be abused the way it was in Andhra Pradesh. And nor should the financial vulnerability of the majority of people in India when faced with a health crisis be cynically exploited for such trials. The onus is on the manufacturers of these drugs, who claim they are producing them to save human lives, to actually do so.

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How green is my paper?

The Times of India, which never fails to surprise, was in fact the best in using the day, and the day before, to bring across some serious stories on the environment.  KALPANA SHARMA regrets the fact that the overall trend is to turn environmental reporting into entertainment. Pix: Kaif at the NDTV Greenathon
Posted Monday, Jun 06 00:45:07, 2011
SECOND TAKE Kalpana Sharma   The Indian media has embraced certain days and made them so routine that they seem to have lost all meaning. International Women’s Day on March 8 for instance has become the day to target women for all kinds of consumer products. The occasional article might remind us that the struggle for women’s equality or for justice has a long way to go. But overall it is a marketing bonanza. June 5, World Environment Day, is not far behind in this except that the target audience is everyone, not just women. So companies vie with each other on June 5 to announce their ‘green’ credentials and the media laps this up as it means more ads and more revenue. How ‘green’ these companies really are, is rarely investigated. This year, some newspapers – Hindustan Times in Mumbai – announced their ‘green-ness’ by turning virtually all their headlines and strap lines green. That is surely a novel way of demonstrating your commitment to protecting the environment! As far as content of the so-called environmental stories goes, they were entirely predictable. At a time when complex issues are reduced to personal pledges, environmental concerns are also simplified into suggestions of how people should grow their own vegetables, use showers that waste less water etc. Commendable as all this is, it does not touch the seriousness of the environmental problems the country faces. The Times of India, which never fails to surprise, was in fact the best in using the day, and the day before, to bring across some serious stories on the environment. On June 4, in the lead up to World Environment Day, TOI’s Mumbai edition carried the kind of environmental story that is fairly rare these days. One, taking off from the recent alarm raised about a toxic laden ship heading for Alang’s ship-breaking yard in Gujarat, was a report on the local ship-breaking yard. Darukhana, located along the city’s eastern coast, has more than 6,000 workers dismantling ships. Their exposure to health hazards has been termed ‘critical’ by a United Nations special officer who, according to this reporter, visited the site in 2010. The story was comprehensive, with quotes from workers involved, and with a box item about the kind of hazards that they encounter while breaking up ships. For someone who did not know that shipbreaking is an environmental hazard, here was an article that illustrated it simply and well. Another excellent environmental story, on the same day, was about the environmental damage being caused to the ecosystems along the Konkan coast by indiscriminate sand mining. No Mumbai paper has recently written about such environmental hazards to the Konkan coast even though the area has featured repeatedly because of the agitation against the Jaitapur nuclear power plant. An alert and environmentally conscious reporter covering the latter would have heard about other concerns that the people living in these coastal areas have about their environment. The point I want to make is that environmental reporting can so easily be reduced to predictable ‘feel-good’ stories, or DIY (Do It Yourself) manuals, rather than investigative stories that expose the callous disregard for the environment by government, industry and often by ordinary people.  Environmental reporting has now been mainstreamed and is no more restricted to features pages as it was in the 1980s when the word ‘environment’ was automatically equated with conservation. Today, environmental stories are political, and not just because our current Environment Minister, Jairam Ramesh, manages to enmesh himself in political controversies with his pronouncements and retractions. It is surprising, therefore, that no newspaper or television channel has thought it worthwhile to follow up the Jaitapur agitation and the Fukushima disaster with its own investigation into the areas around Indian nuclear facilities (access to these, of course, is heavily restricted). In the past, the doctor couple, Sudheendra and Sanghamitra Gadekar has documented the impact of radiation on communities living near the Rawatbhatta nuclear facility in Rajasthan. What is happening there today? Sriprakash from Jharkhand made a powerful film on the uranium mines of Jadugoda and the health impact on local people. What has happened there? Tarapur in Maharashtra, which houses one of the oldest nuclear plants, has been in the news every now and then because of complaints by fisherfolk about the impact of the release of hot water on their fish catch. Have things changed for them? There are dozens such stories on the nuclear issue alone that merit investigation. The Times of India invited Rajendra Singh, India’s ‘water man’ so to speak, to be Guest Editor of their issue of June 5. But what Singh did to revive a river in Alwar district needs replication in hundreds of places around the country. Water – both its availability and the quality of water in our water bodies – is a perennial environmental story. Yet rarely do we come across reports exposing what is happening to our rivers and lakes, particularly those located away from media centres and therefore automatically from media attention. Environmental reporting comes in spurts. When global warming is the subject of an international conference, we see a rise in the number of articles on the subject. Most often, these are reports of the international negotiations on global warming without enough value addition to explain what this will mean for India. Sometimes such occasions do produce articles on regions that are already experiencing the impact of global warming, such as the Himalayas. But once the international spotlight shifts, so does the attention of our media. It is possible that smaller papers and magazines, including those in Indian languages, are doing some good investigations that are not picked up by the more prominent and mainstream media. Yet, what becomes evident is that the overall trend is to turn environmental concerns into entertainment. I must have missed something but NDTV’s Greenathon is one such effort that slightly mystifies me. Are we expected to believe that the presence of Katrina Kaif dancing to “Sheela ki Jawani” and Cyrus Broacha and Farah Khan exchanging inanities with anchor Vikram Chandra, to raise funds for environmental innovation, will wake those watching and listening to the seriousness of the environmental crisis this country faces?
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