OUR HEALTH CAMPAIGNS
OUR HEALTH CAMPAIGNS
Putting Women First
Like a moth seeking light (and here the analogy ends), for most of 25 years, Saheli has been drawn to issues of women’s health and reproduction. And many a time, we have felt overwhelmed by the need to extend ourselves far beyond our capacities.
True to the tradition of autonomous women’s groups, which set out with great energy and inventiveness to empower women with a knowledge of their bodies, the health group in Saheli also made a small beginning in this direction. Our exhibition Aurat ka Chamatkar (The Magic of a Woman) was a resounding success, sought by people in medical colleges, activist groups, health groups, women’s colleges, non-governmental organisations (NGOs), Marie Stopes and others in Delhi and outside. However, we live in a populous third world country, and concerns of empowering women with a knowledge of the body and reproduction was soon overtaken by the more urgent concerns of battling multinational drug corporations and the government, which were dumping hazardous drugs and contraceptives on us. There was little room to define what we wanted. Instead, we had to engage in the task of re-defining what the government thought women wanted. We had to think of the circumstances in which women live, and make decisions, in all their diversity, and point out the implications of government policies and programmes on women’s lives. We had to put women/women’s concerns first.
We have always known it, at least subliminally, that women’s importance in our society derives from her capacity to reproduce. All the same, sitting in a women’s resource centre, it is extremely galling to be confronted with such a reality head on again and again.
Saheli has worked on a number of issues dealing with women and health. Not surprisingly, most of these have been related to reproduction in one way or the other— our campaigns against E.P. drugs, sex determination tests, hazardous contraceptives, and concerns about genetic engineering and new reproductive technologies. Away from the issue of reproduction, we were able to do only one study on the health problems of women in urban slums.
Whenever an issue related to women’s reproduction comes up, like an electrode being activated, an immediate connection gets made to the question of population, rather, population control. No matter what the issue, the yardstick of population control gets applied, to gauge whether the practice is in the greater good or not. And if it is, then it easily seems justified that a few ethical concerns are overlooked, as a trade off.
Almost simultaneously, a second connection is made. Are women seen to want it or not? Once ‘women’s own choice’ is established, anyone and everyone going against this holy tenet of a woman’s right to choose, automatically comes under attack. Saheli has had to swim against the tide on both these fronts.
E.P. drugs campaign: A campaign of letters
In the early 1980s, E.P. drugs (Estrogen Progesterone combination drugs in higher dose than used for contraception) though meant to be sold on prescription, were freely available to anyone from a chemist, and were rampantly misused by doctors and others alike to test pregnancy, to ‘treat’ secondary amenorrhea, to postpone menses and as abortifacients. They had already been banned in several countries, either totally or at least for pregnancy testing. The World Health Organisation (WHO) had notified member countries worldwide in 1975 that these drugs should not be used in pregnancy because of their association with congenital malformation. In 1976 the Director General Health Services in India, after seeking expert advice, refrained from banning the drugs but made it obligatory for all manufacturers of these drugs to carry warnings to this effect.
What are E.P. drugs?
E.P. drugs are synthetic female hormone preparations. The drug had to be given for three days and then stopped. If the woman had bleeding after a week, she was supposed not to be pregnant. However, further research showed that this test was not reliable, as one in five women got a false result. In such cases she could possibly give birth to a baby with congenital malformation (birth defects).
True, women were also buying E.P. drugs from the chemist either to test if they were pregnant, or in the hope that they would have an abortion by taking these drugs. But vital information was being withheld from them. Neither doctor, nor chemist, nor product information sheet told them that these drugs were not a reliable test for pregnancy. No one told them that they could possibly give birth to a child with birth defects if they had taken the drug while pregnant. No one told them about any alternate way of getting a pregnancy test. No one told them that the withdrawal bleeding they may have does not mean they have had an abortion.
At Voluntary Health Association of India (VHAI)’s drug workshop in Pune, in 1982, where several representatives of health and consumer groups met, a decision was taken to launch a campaign against E.P. drugs on March 8 International Women’s day. Women were the sole consumers of these drugs!
In Delhi, a Committee for Reproductive Control was set up, comprising interested organisations and individuals, the members of which went out to ascertain for themselves the practice adopted by doctors and chemists with regard to these drugs. Based on this and a study of available literature, a letter was written to the Drugs Controller of India (DCI), which was followed by a dharna in front of his office as no reply was received from him.
In what could be called a campaign of letters, Saheli along with VHAI, who was spearheading the campaign sent out letters to groups all over India, wrote to doctors and chemists, and conducted a signature campaign amongst doctors, to create awareness that E.P. drugs should not be used as a pregnancy test as they can cause birth defects. Looking back, it seems a bit ridiculous that a group of NGOs should be educating the medical profession about something they should have known already. As the campaign gained momentum, various groups put forward demands ranging from rigid implementation of the warning, to a complete ban of such drugs. Meanwhile, the Drugs Controller, drug manufacturers, and the medical profession, the supposed guardians of our health were busy confusing and obstructing and obfuscating issues. Endless confusion was created between high dose and low dose combinations, and a variety of gynaecological conditions were cited for which these drugs were supposedly needed. There was a huge market for these drugs, mostly due to misuse, and no one wanted to kill the goose that was laying the golden eggs. No action was being taken against drug manufacturers for defaulting on issuing warnings, no action taken against doctors for prescribing E.P. drugs for pregnancy testing, no action against chemists for selling prescription drugs over the counter, no action in case a woman produced a malformed baby—just business as usual.
Even when the drugs were banned in 1982, drug manufacturers promptly got stay orders against the ban from the High Court. It is a telling commentary on those who claim to be working in the interests of women, that no attempt was made by the government to get the stay orders vacated. Four years later, the Supreme Court ordered public hearing on these drugs, in response to a Public Interest Litigation (PIL) filed by Vincent Panikulangara, against the continued sale of banned drugs, including E.P. drugs Again, the DCI and the drug companies made every effort to scuttle the issue, so that business could go on as usual. Finally, it took the combined strength of concerned doctors, lawyers, journalists, health groups, women’s groups, science groups, consumer groups and activists to appear at the hearings and get the ban reinstated.
Saheli prepared a submission for the hearings which included a critique of the evidence presented by drug companies at previous hearings, and two affidavits highlighting how doctors were still prescribing E.P. drugs for pregnancy testing despite the hearings, and despite their giving testimony on behalf of drug companies.
Ours was one of the few, if not only, live, recent, fact-based presentation, and it had a good impact at the hearing. The positive fallout for Saheli was that the establishment and health activists changed their opinion of us to an extent—we were not just rabble rousers — we could also think rationally, and that too on medical issues. This did help by the time Net-En came along.
A constant refrain of the government is that ‘we are working in the interests of women’s health, we are trying to meet their needs’. The E.P. campaign should have then given the government and manufacturers of drugs and health equipment the clear message that women genuinely need an effective, safe and cheap way to test pregnancy. Women need access to safe abortion. Women need simple and clear guidelines on what to do if they suspect they are pregnant.
Ours is not a completely market driven economy, at least it wasn’t in the early 1980s. Even if the country did not have an indigenously produced pregnancy testing kit, is it so farfetched to assume that the government could have subsidised the cost of the available urine test?
Strategising to stop sex selection
The practice of medicine is no longer an art, but a science, with each new technological innovation being hailed as progress. It is also a huge industry, with commercial interests sometimes outweighing everything else as could be seen with E.P. drugs. Throw in the population control equation and the matter of ‘women’s choice’, and the result is a heady mixture of contradictions. Such was the case when we started campaigning against sex determination tests in 1982.
In this case, technologies which were genuinely useful in detecting congenital malformation in the foetus, or in monitoring the development of the foetus, also had the potential to determine the sex of the unborn child. And it was this latter capability which provided unscrupulous members of the medical profession a great opportunity to play upon and benefit from our society’s craze for a male child. Amniocentesis was one such procedure that could detect about 70 genetic abnormalities by examining foetal cells.
In 1974, amniocentesis was being tested in India as a technique for detecting genetic abnormalities. The All India Institute for Medical Sciences, Delhi, easily managed to enrol 11,000 pregnant women as volunteers for the research. As soon as the women knew that they were carrying a female foetus, they demanded an abortion. Sex determination tests were subsequently banned in 1978 in government hospitals by the Janata Government.
From 1979 onwards, amniocentesis became available through private clinics and hospitals and proliferated rapidly not only in urban areas but in small towns as well. Places which did not have potable water or electricity had flourishing clinics doing amniocentesis. Rural health centres which did not have basic facilities for testing for tuberculosis, or storing polio vaccine in the refrigerator were sending samples of amniotic fluid in ice packs through courier to laboratories in towns for sex determination.
These tests were widely advertised in local trains, wall writing, in the press and through leaflets and direct mail. According to a Times of India report, an estimated 78,000 female foetuses were aborted between 1978 and 1982.
The initial response of the women’s movement was to protest this ‘femicide’ by informing women’s organisations and voluntary agencies about these tests. The Committee for Reproductive Control set up in Delhi, comprising Saheli, VHAI, and others sent telegrams and letters to the Ministry of Health and Family Welfare (MoHFW), Indian Medical Association and others and urged all groups to do likewise. International women’s groups were also requested to write letters of protest to the Minister of Health.
While media reports, and other investigations were sending shockwaves about the number of female foetuses being aborted, a raging controversy erupted about the rights and wrongs of sex determination. Discussions on the ethics of doing amniocentesis were still raging between the pro and anti abortion lobbies. The anti abortion lobby saw this as yet another violation of divine law. The arguments ‘for’ sex determination were aplenty: there’s nothing new about getting rid of female babies; more humane to abort a female foetus than to have her live a life of hell; will control the population explosion; if the ‘supply’ of women is reduced in society, their ‘demand’ and consequently their status will improve; isn’t abortion a woman’s right? In this flurry of argument and counter argument, we had to continuously articulate our position publicly. In the process, the terminology being used got redefined: from ‘female foeticide’ to sex selective abortion; from a concept of individual right over the body linked with a notion of social justice.
The women’s movement and other concerned groups and individuals (including some doctors) were hard put to separate the strands of these arguments. The overtones of population control, and official sanction or laxity in addressing the issue because the ‘numbers’ were reducing by means fair or foul; the reality of a fast declining female sex ratio; the increasing privatisation of the health care sector; religious fundamentalism; together with a highly unregulated medical community; and of course the miserable plight of women in the country, created many pressures and counter pressures. Along with other women’s groups and health activists we continued to highlight how coercive population policies were contributing to the growing incidence of sex determination and pre-selection. We also protested against government policies which were contributing to unregulated private medical practice, and demanded accountability from the medical community.
By the mid-1980s sex determination tests, by now being conducted also by ultrasonography, had spread all over India, but most rapidly in Maharashtra. Under continuous pressure from women’s groups and voluntary agencies, under the banner of the Forum Against Sex Determination and Sex Pre-selection (FASDSP) in Mumbai, the Maharashtra government in 1986 enacted a legislation to ban these tests.
While the legislation was a victory of sorts, it had a lot of loopholes. First, amniocentesis, though the most common used technique at the time, was rapidly being joined by other techniques such as chorionic villous sampling, ultrasound, etc., and had to be included in the legislation. Second, the tests could not be banned outright; their use had to be limited for certain purposes only. Third, bringing out legislation State by State was very cumbersome and counterproductive. As soon as the Maharashtra legislation was out, people started going to neighbouring Gujarat and Goa for the test. Fourth, we were very concerned that the woman undergoing the test was being made out as the villain of the piece and liable for punishment. Thus was born the demand for a comprehensive Central legislation.
In the late 1980s, the FASDSP spearheaded a nationwide campaign to demand a Central legislation. A massive signature campaign was initiated, and thousands of signatures poured in from all over the country. Saheli took the lead in Delhi, not only to gather signatures, but also to educate Members of Parliament about the need for a Central law. Dossiers were put together, data was simplified, and women activists attempted to communicate to the law makers the gravity of the situation.
While the campaign for Central legislation was going on, new reproductive technologies (NRTs), or assisted reproductive technologies (ART) were gaining a foothold in the West. In vitro fertilization, surrogate motherhood, cloning, were just some of the techniques being tested. All these techniques did not bode well for women or for human rights for we were steadily progressing towards a world of designer genes, designer human beings. A world in which the desirable would live and the undesirable would not be brought into the world. It was easy to see how women, being the undesired sex in a country like ours were even more in danger of being eliminated. This heightened our concerns for broadening the terms of the legislation to cover all future technologies for sex selection. NRTs had already come to India, albeit in a small way.
By this time, another voice joined the campaign. What had been a tiny voice earlier, became stronger - and has since become even stronger - was from the disability rights groups: who decides what is ‘normal’? Who decides who has the right to live? Where does ‘choice’ conflate with eugenics in deciding which foetus is fit to be brought into the world?
The government went through the motions of seeking the opinion of all concerned parties, and set up a Joint Parliamentary Committee (JPC). Saheli, along with other groups, deposed before the JPC in 1992, critiquing the proposed Bill in detail, to presenting evidence gathered first hand by Saheli members who had posed as pregnant women seeking sex determination tests. The Prenatal Diagnostic Techniques (Regulation and Prevention of Misuse) Act (PNDT Act) was enacted in 1994, six years after the Maharashtra Regulation of Pre-Natal Diagnostic Techniques Act 1988. But despite all our inputs, it was also an ineffective piece of legislation. It took another decade of campaigning and a PIL by Centre for Enquiry into Health and Allied Themes (CEHAT) et al., for the amended Act, 2002 titled the Pre-conception and Pre-natal Diagnostic Techniques (Prohibition of Sex Selection) to come into being. This Act received the assent of the President of India on January 17, 2003.
The long-awaited amendment – geared to strengthen the regulatory mechanisms and implementation of the Act and also broaden its scope – was greeted with applause by women’s groups and health activists, and hostility by the medical profession, which tried its best to scuttle the reframing of the law. By bringing into the ambit of the Act emerging techniques for pre-conception sex selection such as sperm separation and pre-implantation genetic diagnosis; increasing the fine; suspension and cancellation of the registration of violators, the law rightly targets the medical profession: the so-called ‘supply’ side of the practice of sex-selection. Manufacturers of ultrasound equipment are now required to sell their products only to registered clinics, and all ultrasonographers now have to maintain records of all tests conducted by them.
Research conducted by Saheli in 2006 shows a tremendous increase in the manufacture and import of ultrasound machines in the period following liberalisation of the economy in the late 1980s. One can conclude that sex determination, which also increased tremendously in this period, was being conducted through ultrasound, which by then was being routinely used in medical practice.
When any act moves from being ethically wrong to being legally prohibited, regulatory mechanisms play an important role. Cynics may deny the utility of a law simply because it is possible to flout it, and because the regulation brings with it the scope of corruption – the much decried ‘license raj’. Yet, the demand for legislation, and the articulation of what constitutes a wrong-doing/crime has been an important aspect of many campaigns of the women’s movement, as it establishes the notion of what is and is not socially acceptable.
While the ‘demand side’ of sex determination can be (and must be) tackled through social initiatives and not enforcement, this is a more long-term process, and one where change is not so tangible. Saheli has consistently attempted to change mindsets, in small ways – through college programmes, through street programmes – where we sang songs like Beta pyara beti nahi, main poochhuji kyun. We have also had animated discussions with doctors in meetings, seminars and continuing education classes.
For the women of India, the Census figures of 2001 showing a steadily declining sex ratio served to shake people out of their lethargy. Now we were dealing not with imagination but hard statistics—no matter how these were computed. Another fallout of these revelations was to set another ball rolling, one in which a lot of foreign agencies have become involved, pouring money into NGOs to tackle the problem of declining sex ratio! How long this will remain a priority for donor agencies and NGOs, remains to be seen.
Campaign Against Hazardous Contraception: Enough is Enough!
How and why did a bunch of feminists, armed with little more than abundant curiosity and enthusiasm, dare to enter the portals of the scientific establishment, and demand a thorough house cleaning job?
It is perhaps because contraception is perceived as a ‘women’s issue’, an issue that does not find centrality either in the campaign against hazardous drugs, or in the broader campaign for rational medical practice. Though many people involved in these campaigns lent unstinting support to our campaigns against hazardous contraceptives, they were spearheaded by the women’s movement and have remained our domain since then.
Saheli has campaigned against several hazardous contraceptives – long-acting hormonal contraceptives, anti-fertility vaccine (AFV), and chemical sterilisation, just to name a few. And our work on these campaigns spans more than two decades.
Rejecting injectable contraceptives Net-En and Depo-Provera
When we first heard about injectables, Depo-Provera and Net-En (contraceptives that come in the form of an injection), alarm bells rang in our heads. Given the injection culture in our country, we feared they could easily be administered to women without their knowing that they were being injected with a contraceptive. And given the target oriented family planning programme in our country, this was not at all a far fetched possibility.
In the early 1980s, Depo-Provera was the injectable everyone talked about. It was already mired in controversy. Not approved in the country of manufacture (U.S.) for contraceptive use, public hearings had already been held in U.K. and U.S. in 1983, to review its safety and effectiveness. Western feminists had participated in these hearings, voicing their strong reservations about Depo-Provera being in the interests of women. Women’s groups in Bombay successfully protested against the attempt by private practioners like Dr. Zhaveri to import Depo-Provera in India.
Depo-Provera soon acquired the name of the ‘controversial contraceptive’. Instead of abandoning injectables, Net-En was then pulled out of the closet, and this acquired the name of the ‘other injectable’. Though containing different drugs, both were derived from the female hormone progesterone, but in synthetic form. They were similar to each other in many respects, though some of the effects of Depo-Provera were more pronounced.
Net-En was the less tested of the two injectables, because its efficacy was less than that of Depo-Provera. We first came to know about Net-En as a contraceptive that was not very well researched, was either not approved or approved for very limited use in Western countries, and had the potential of causing serious side effects.
At the time, in 1984, the government was testing Net-En in field conditions, in 45 primary health centres, prior to introducing it in the family planning programme. When Stree Shakti Sanghatana, a women’s group in Hyderabad got wind of this they went and saw for themselves what was happening and discovered that the women being enrolled for the study were merely being told, ‘injection le lo, baccha nahin hoga.’ The health workers admitted that they did not tell the recruits anything more, because if they did, no one would come, and how would they fulfil their targets?
This small fact finding mission, snowballed into a full fledged campaign. The first issue that arose was of informed consent. It was unethical to recruit women for a trial without telling them all about the contraceptive they were to receive. The second issue - it was unethical to offer a ‘yet to be approved contraceptive’ along with approved contraceptives, thereby granting the trial contraceptive the seeming status of an approved contraceptive.
If this was the way Net-En was being tested in one centre, chances were that it was happening in all 45 centres, affecting over 2000 women. In fact, several thousand women would have been affected in earlier trials of Net-En. Since it was not a local matter, and large numbers were involved, it was thought best to take advantage of the recently instituted PIL, and file a case in the Supreme Court against the MoHFW, the DCI, the State Government of Andhra Pradesh and the Indian Council of Medical Research (ICMR). The signatories to the petition were three women’s organisations, five doctors and a journalist. Since the Supreme Court is in Delhi and the case needed to be coordinated from here, Saheli took on the role.
The case against Net-En in the Supreme Court started off with a supposedly simple proposition—that the fundamental rights of women were being violated by the unethical manner in which phase IV (pre-programme introduction) trials were being conducted, and that the Court should intervene to stop all further trials; that several aspects of the safety of Net-En were questionable, and the Court should call for complete information about the contraceptive from the respondents and set up a commission to review all this data.
However, we were faced with a dilemma. Saheli, as well as the entire women’s movement and our lawyers were not sure how the Court would react to such a petition. The plea of fundamental rights being violated would probably have been stronger if we were able to show IMMEDIACY, but there was none; if we had been able to show horrific suffering being endured, (if 70 percent of the women found Net-En unacceptable and dropped out on their own, what was the problem?); and to top it all, population control was a priority programme of the GoI and the respondents were premier government institutions such as ICMR, DCI and the MoHFW. As the court does not generally get into technical scientific matters, it was thought best to include technical aspects but not hinge the petition on them.
The petition was filed in April 1986, and the few hearings that were held on Net-En finished so quickly, that we were left gasping, and could not hear a word of what the judge said or what our lawyer said. At the first hearing itself, the court was inclined to dismiss the petition. Our lawyer, Mr. M.S. Ganesh, saved the day by promptly quoting WHO from the petition – ‘... There are a number of questions on the effectiveness and safety of Net-En that continue to require research: optimal time and dose regimens, effects on lactation and progeny, long-term sequelae, effects on lipid metabolism, and on endometrial bleeding, and performance of these injectables in the normal service situation’. The Court then ordered the respondents to file an affidavit and show cause as to why the petition should not be admitted. It is important to note that the petition was still not admitted.
The Government of Andhra Pradesh and ICMR filed affidavits later in 1986 but the DCI and the MoHFW did not. Instead of providing the so called full and complete information, they resorted to being utterly dismissive. They made bald assertions about the safety of the drug and denied any health hazard to women users or their future children.
We had no choice but to counter these claims, for our petition was in danger of being summarily dismissed, and that would be a disaster for the present as well as the future. Furthermore, we had to counter not just ICMR, but WHO as well, since it was being quoted both by ICMR and us. Our experience with the E.P. drugs campaign (see box, some important issues…) had already told us that quoting one expert against another can be a dead end exercise. Our only chance lay in exposing what is wrong with the contraceptive in principle and showing why it is unsuitable in Indian conditions.
Our wide ranging study of material, collected by us and sent to us by supporters in India and abroad, enabled us to do an exhaustive analysis of a host of issues starting from the very process of developing new contraceptives down to the stage when a new contraceptive is introduced into the family planning programme. This process helped us create a detailed framework which we were also able to use later in analysing and critiquing other contraceptives. This massive research attempt, undertaken with the generous help and support of many medical and non-medical people, resulted in our filing a highly technical counter affidavit in 1988 which provided a point-by-point reply to ICMR’s affidavit.
The court case generated a lot of debate, and the issues received considerable attention in national and international journals, magazines and newspapers. However, it was consuming a lot of our time and energy. Also, the whole business of the ‘matter’ is in court, and cannot be talked about as it is sub-judice, did not sit well with our perception of ourselves as an activist group, one with a public face. We did not want the debate to be confined to the court room, hence attempted to disseminate information about Net-En as widely as possible, to women’s organisations, science groups, consumer groups and health professionals all over India. To reach women in rural areas, we prepared an exhibition of posters on Net-En which we displayed at a rural Mahila Mela in Rajasthan and other places. We also had a series of discussions with health activists and women from bastis in Delhi. We not only simplified material for each audience, we also framed a list of questions which could be used by any person to collect information about contraceptive delivery in their area. Nevertheless, we were limited in our ability to gather data from the field because we are not a mass based organisation and are not engaged in area based health work ourselves.
At a seminar organised by us on ‘Population Policy and its implications for women’, in 1986, several pertinent questions were raised:
Why is ICMR experimenting with so many contraceptives which are all meant for women, and all are hazardous? (implants, AFV). Why are no contraceptives for males being developed?
Why is research being done on long acting invasive methods of contraception, and no attempt being made to improve the existing non-invasive methods such as condom, diaphragm, cervical cap etc.? Is it because the long acting methods give the government more control?
If women’s health is the concern of policy makers, why do we have a target-oriented Family Planning Programme (FPP) which leads to so much abuse?
As so many hazardous contraceptives were being researched, it was felt that it was not feasible or desirable to file a fresh petition each time. Rather, it was imperative to demand a change in the FPP.
Challenging WHO’s legitimacy
The whole Net-En issue within the context of the population policy was also taken to the International Women’s health Meeting in Costa Rica in 1987. It was while Kalpana and Nalini were preparing for this conference, that they happened to come across mention of the connection of the WHO with the pharmaceutical industry. This news created quite a furore at the conference.
‘...Furthermore, the Programme has developed good working relations with the pharmaceutical industry in a variety of ways. Where products are marketed, but comparative data are unavailable, industry has provided compounds and devices for comparative trials, most often free of charge. Where products are not yet marketed, the Programme has carried out a variety of clinical studies, thus significantly contributing to the early registration of the products. Finally, in certain instances the Programme itself has been responsible for initial research and development of a new method, and then has approached suitable industrial partners to share the product development costs.’ Special Programme Of Research, Development And Research Training In Human Reproduction, 14th Annual Report, 1985, WHO.
WHO is widely believed to be an impartial scientific body, which one can turn to as a reference point. But if they are sitting midway between Drug Regulatory Authorities on the one hand, and the pharmaceutical industry on the other, their impartiality is severely stressed. Our fears of co-option are minor in comparison! The realisation that ICMR’s contraceptive units have been set up with the support of WHO, creates another linkage that does not augur well for impartial, country specific, need based research.
For the next ten years, there was no further progress on the legal front in the Net-En case, apart from it being occasionally listed for hearing and then getting postponed. ICMR, the DCI and the MoHFW could have replied to our counter-affidavit of 1988, but chose not to. Instead, quite surreptitiously, without any public announcement, they withdrew their plans for introducing Net-En into the FPP and it was to be available only on the prescription of a doctor.
When the petition was finally disposed of in August 2000, S.Murlidhar was our lawyer. The affidavit of the MoHFW said ‘… It is submitted that the said drug (Depo-Provera) and also Net-En although available in the market against prescription but they are not included in the family planning programme... The MoHFW is proposing to introduce Net-En injectable as a new contraceptive in National Family Welfare Programme in such places only where adequate facilities for follow up and counseling are available.’
In a wider sense the court case could be viewed as an attempt to redefine the relationship between the State and the public vis-à-vis population control. To make the State accountable for its actions, to press for the right to information, to demand adequate health facilities, to demand for redress in cases of abuse or contraceptive failure or adverse effects. There is no legislation covering these issues, and it is not possible for contraceptive users to sue the government for medical malpractice. Had there been an actual judgement in the case (remember, the petition was still not admitted, and does not exist in court records!), it would have been a landmark and set a very important precedent. Nonetheless, our repeated efforts at demanding accountability did bear some results, and helped future campaigns.
Meanwhile, in 1993, the tables had turned once more. Net-En was stuck in court, but Depo-Provera was not! Under tremendous pressure to approve Depo-Provera as a contraceptive so that it could be used in other countries, the US Food and Drug Administration (USFDA), after refusing twice finally granted approval. The decks were cleared, and the DCI lost no time in approving Depo-Provera for use by private practitioners in India. Unfortunately, the DCI could not grant approval for its inclusion in the FPP, for by then Depo-Provera had also reached the Supreme Court, due to an intervention application filed by Jagori et al. in a case filed by the Drug Action Forum against hazardous drugs in 1993.
The almost back door entry of Depo-Provera in the Indian context was also facilitated by the overall liberalisation of the economy. Not only was a contraceptive (hitherto believed to be hazardous) to be introduced into the market, it was to be promoted by a public relations firm, which would launch it in major cities of India.
Private marketing of public health hazards
Depo-Provera was officially launched for ‘social marketing’ in 1994, with the only proviso that Max Pharma, its manufacturer, conduct a Post Marketing Surveillance (PMS). This was more to appease the opposition (us!) since there was very little Indian data on this contraceptive. Women’s groups in several cities responded with strong protests. In Delhi in mid-1995, Saheli, along with other groups, gate crashed a press conference of Max Pharma, organised by public relations firm, Mudra Diversified. We raised pertinent questions, about the safety of the contraceptive and its service delivery, made it to the front pages of newspapers where our ‘unladylike’ behaviour came under scrutiny, as much as the pertinent questions we had raised. Subsequently, the DCI, in meetings with Saheli, expressed his inability to intervene, because of the ‘forces of liberalisation’. Jagori, along with some other women’s groups and individuals also filed an application in the Supreme Court case against the introduction of Depo-Provera. The campaign also highlighted the biased information being given to Indian users. The package-insert (drug information sheet) of Depo-Provera marketed in India contained only 34 adverse effects as against the package-insert in the US which lists as many as 72 adverse effects. It was around this time that Net-En too was permitted for private marketing.
The case against hazardous drugs filed by Drug Action Forum was referred to the Drug Technical Advisory Board (DTAB) which recommended a cautious approach. In its meeting in February 1995, the DTAB stated, ‘Depo-Provera is not recommended for inclusion in the FPP.’
The increasing privatisation of health care, has seen the entry of NGOs into the field of health and family planning in particular. This has thrown up a gamut of issues – how can they be made more accountable, and can their activities be monitored?
NGOs, with their flexible structure and closer outreach to people, appear to have more credibility and sincerity in implementing programmes. The government has sought to utilise this factor to the fullest extent. Many NGOs are little more than implementing agencies for the government with funding from foreign donor agencies. Depending on funding for their very existence leaves little scope to critique the donor driven agenda – be it family planning or the new catch all concept of ‘reproductive health’. NGOs such as DKT International, Mumbai, the Family Planning Association of India (FPAI) and Marie Stopes Clinics/Parivar Sewa Sansthan, with branches all over the country, have included Depo-Provera in their ‘reproductive health package’ in an attempt to ‘increase choices in spacing methods’.
Yet, monitoring the activities of NGOs, ensuring quality research and service delivery is essential. The growing trend of ‘privatising’ research has disturbing implications. PMS in lieu of Phase IV clinical trials conducted by impartial scientific bodies is another outcome of the liberalised economy.
Ordering PMS in lieu of clinical trials, and particularly, the handing over of PMS to the very pharmaceutical company which directly stands to profit from the results of the research, raises serious doubts regarding ‘scientific objectivity’ of the data collected and its analysis. It must not be forgotten that India is one of the largest markets for contraceptives in the world. According to government statistics, there are almost 40 million potential users – a potential market larger than the entire population of Switzerland, Norway, Sweden, and Australia put together. Little wonder that multinational pharmaceutical companies have been consistently wooing the Indian contraceptive market with aggressive propaganda and ‘information packets’ which hide more than they reveal.
The move to introduce Depo-Provera in the FPP, ably assisted by NGOs is ongoing. In October 2004, a workshop was organized and co-ordinated by Parivar Sewa Sansthan, in collaboration with the Government of India, UNFPA and Packard Foundation through Population Foundation of India to ‘expand choices of contraception’ by the introduction of hormonal injectable contraceptives. Although invited to the meeting, Saheli along with Sama and several other women’s groups boycotted the meeting and held a press conference to explain ‘Why we oppose Injectables’.
The attempts to introduce both Depo-Provera and Net-En in the FPP are ongoing – through NGOs as well as through the ICMR. Andolan zaari rakhna padega!
Saying ‘No’ to Norplant
Norplant was another long acting hormonal contraceptive that the government was in a hurry to introduce. In the 7th Five Year plan, (1985-90) the government stated ‘Research related to new methods of family planning which have been found efficacious and safe for their introduction into the national FPP would be completed expeditiously, i.e. long-acting injectables and sub-dermal implants will be introduced progressively in the seventh plan.’
What are sub-dermal implants?
A sub-dermal implant is a device that is inserted under the skin, usually on the underside of the arm. It consists of one or more matchstick-like rods. In case of Norplant, it contains a hormone that is slowly released into the body. Insertion and removal of the implant is done by making a small incision in the arm under local anaesthesia. Several implants have been developed, sometimes containing different hormones. Norplant is the brand name for an implant which has two or six rods containing the hormone levonorgestrel. This is also a synthetic form of progesterone, so it acts in similar ways to injectables. However, as it is a different hormone, it also has actions that are specific to it. Norplant is believed to be effective for three or five years depending upon the product.
While research had been completed in India on Norplant 2, meant to be used for three years, Norplant 6 meant for five-year use became available. The former was withdrawn from the world market, so in a quick shift, it was decided to proceed with introduction of Norplant 6 in a phased manner, starting with medical colleges, and skip the phase III clinical trials since these had been done with Norplant 2 and both contained the same hormone. We had already witnessed a similar switch with injectables-from Depo-Provera to Net-En and then back to Depo-Provera. The question that begs to be answered is, are we being forced to accept contraceptives that are second choice even for researchers?
In 1991, ICMR called a meeting for ‘women health advocates’, regarding the proposed introduction of Norplant 6 into the FPP. They claimed they wanted to know what women want, but wasn’t it too late to ask? Significantly, ICMR made no attempt to get broad based representation of women’s groups—not a single organisation involved in the court case against Net-En was invited while women representatives from Ford Foundation, UNFPA, FAO, were. Members of Saheli and Medico Friend Circle (MFC) had to barge into this meeting uninvited to voice our concerns, primarily that the research findings of Norplant 2 could not be automatically extrapolated to Norplant 6 because a different drug delivery system was used in them.
Predetermined, prestructured meetings such as these which use representation of women to rubber-stamp government proposals are dangerous in themselves. They also preclude the possibility of asking some basic questions, because everyone is so caught up by the preset agenda. For instance, is it really in a woman’s interest to use a contraceptive that lasts for five years? The desired birth interval is usually considered to be between 2-3 years. Is this why ICMR had been researching Norplant 2 in preference to Norplant 6?
However, the problem with provider controlled contraceptives is that you cannot ‘turn off’ their effect as and when you choose. In the case of Norplant, removal is a procedure requiring a degree of skill. Even though it is touted as a minor surgical procedure, requiring a small incision, experience has shown that removal is far more difficult than insertion because adhesions form around the implant and it has to be teased out with great care. Experience also revealed that while health providers are trained to insert the contraceptive, they are often not trained adequately to handle removal. These procedures add to the risk of HIV infection due to unsterile equipment.
Another aspect of using provider controlled contraceptives came to light when health personnel refused to remove Norplant on women’s request ahead of time because it was an expensive contraceptive and it would be a ‘waste’ to throw it away. A related issue is that there is no system of following up users of a particular contraceptive. In five years, women may move away, in fact instances have been reported of women not getting their Norplant removed at all, not even knowing that it needs to be removed. There is no information about what happened to these women if they became pregnant, whether they had normal deliveries or bore children with birth defects. If upto 30% of users can be lost to follow up during trials, what will happen when the contraceptive is available in the FPP? According to the Population Council Manual 1990, WHO warns about the need for regular medical check-ups and follow ups in women using Norplant, who are anaemic, have hypertension or diabetes. Is this at all likely to happen in the Indian context?
After the Net-En case, women’s groups have become more alert to the need to contact women recruited for trials. We also embarked on such a study, which could not be completed due to various reasons. However, Forum for Women’s Health in Bombay were able to talk to women recruited for Norplant trials. None of these recruits knew that they were participating in a trial; they claimed they were not given any medical check-up; and as they were poor jobless women with no permanent address, it was easy for them to be ‘lost to follow up’. Some women recruited for the trials in Delhi, claimed they had not been told about side effects and were refused removal on request. Hearing about Saheli’s campaign against Norplant, a gynaecologist from Nepal contacted us to tell us about her bad experiences with inserting Norplant. When, out of 351 women, only 27 had no complaints, she became convinced this was an unsuitable contraceptive!
Protesting about the introduction of Norplant took many forms. We petitioned all the institutions which by now had been set up supposedly in the interests of women. The National Commission for Women (NCW) received many a memorandum from Saheli and other groups, urging the NCW to take a stand. Jayanti Patnaik, the then Chairperson, in 1992-93 carried out a long correspondence with the ICMR, demanding information and raising our concerns with Dr. S.P. Tripathy, the then Director General. We also spearheaded joint petitions to Prime Minister Narasimha Rao, who was also Chairman of the National Development Council, when petitions to the MoHFW failed to elicit any response. We met Members of Parliament, and briefed them about the issue so that they could raise informed questions in the Parliament, to press for accountability from the government.
And we also took to the streets – with our play on Norplant. The spoof, with Dr. Khotedar (Dr BluffMaster), a take-off on the then Health Minister, Dr. M.L. Fotedar, was a major hit. Through the medium of a street play, with many songs and comic scenes, serious issue like the hazards of Norplant, coercive government population control policy and the politics of pharmaceutical MNCs were conveyed with ease. We performed the play at several street corners, bastis, colleges and in front of hospitals.
In 1997, Wyeth-Ayerst, the manufacturers of Norplant 6 had to face lawsuits from thousands of women users on the ground that the side effects experienced by them due to Norplant were far more severe than they were led to believe. In 1999, Norplant was withdrawn from the market in the UK, following many complaints. Concerted protests from Indian women’s groups, as well as international pressure, has so far staved off the entry of Norplant in the FPP. In India the women do not have a recourse to similar remedies and are therefore more vulnerable to abuse.
Chemical sterilisation: NGO-ised research and distribution
If remoteness were not so much a part of scientific temperament, scientists may understand how women may perceive Quinacrine sterilisation (QS) as violent or barbaric. This process of sterilisation entails inserting quinacrine (an anti malarial drug) within the uterus to induce burning leading to scarring which would then block the fallopian tubes.
Doctors and unregistered medical practitioners in various states like West Bengal, Karnataka, Uttar Pradesh, Gujarat, Delhi and Chandigarh have used quinacrine to sterilise poor and illiterate slum and rural women. In some regions the use of QS dates back to more than two decades. In June 1994, the WHO warned researchers to immediately stop quinacrine trials on women all over the world. The Scientific and Ethical Review Group of the WHO was categorical that no national drug regulatory authority in the world has approved QS.
Although QS was being used right through the 1980s, the campaign against it in India picked up only in 1997 when we protested against the importers of the drug. ‘The Yellow Haze’ a documentary film, produced by students of the Mass Communications Research Centre, Jamia Millia Islamia University was immensely helpful in raising the issue.
After sustained pressure and lobbying against the Quinacrine method, we at Saheli were heartened to receive a positive response from the DCI’s office. The letter in December 1997 informed us that the DTAB had ‘recommended the banning of quinacrine pellets on benefit risk consideration.’ It is significant that QS, even prior to the government ban in 1998, was not an approved method in the country. It did not have the approval of any national drug agency like the DCI whose permission is essential for the trial or use of any new drug/method in the country.
The Saheli report, ‘Quinacrine:The Sordid Story of Chemical Sterilisation,’ published in 1997 made waves in many forums. In August 1997, the International Federation of Gynaecology and Obstetrics (FIGO) in Copenhagen was one such opportunity to highlight the issue. Following their tried and tested modus operandi, the International Federation for Family Health (IFFH), the organisation of Drs. Kessel and Mumford (the promoters of QS), had set up an ‘information booth’ to recruit physicians from the third world to use quinacrine pellets for female sterilisation. Samples of the inserters containing pellets, literature, booklets and video tapes detailing the procedure were being distributed free of cost. As a counter, the newly formed Quinacrine Alert Network distributed an information package critiquing the procedure. The local press also highlighted the abuse of this method on third world women.
According to a report by Shree Mulay, who attended the Conference, ‘The atmosphere at the conference was well captured by the discussions outside the hall with Dr. Jain who saw a copy of the report on Quinacrine published by Saheli, and was furious. He asked, ‘Who is funding you people to come and make trouble here? Must be foreign funding.’ In response he was told, ‘From now on you can expect that women will be present wherever Quinacrine is promoted. You can expect trouble wherever you go.’
While we are undoubtedly pleased that our report had some impact, the vast outreach of the promoters of Quinacrine is a sobering thought. It was around July - August 1997 that the US Food and Drug Administration (USFDA) warned the public not to purchase a self-sterilisation kit using quinacrine pellets, advertised on the internet. Recent permission granted for the testing of QS in the US portends no good for women the world over, for, as we have experiences, licensing in the US paves the way for sale in the rest of the world.
Though the banning of Quinacrine for female sterilisation is undoubtedly a victory for the women’s health movement in India, any complacency would be misplaced. Loopholes exist in the very law under which QS has been banned. Section 10 of the Drugs and Cosmetics Act itself contains a proviso: ‘Provided that nothing in this section shall apply to the import, subject to prescribed conditions, of small quantities of any drug for the purpose of examination, test or analysis or for personal use.’ The vague wording, i.e. ‘prescribed conditions’, ‘small quantities’, ‘any drug’ etc., leaves ample scope for misuse.
Widespread awareness and sharing information among doctors, especially private practitioners would go some way in keeping the issue alive in the public mind. It is only when one knows that a procedure is illegal and harmful, that one can go about bringing the culprits to book.
Anti-Fertility vaccine research: Halting the race
Consider the desperation of scientists who, for something like three decades, were trying to control women’s fertility by tampering with the body’s immune system. At a time when India was considered to be 20-25 years behind the West in all technological matters, Indian scientists were in the forefront of research to produce a vaccine which will prevent pregnancy. Dr. G.P. Talwar was involved with this research since the early 1970s, through the Department of Biochemistry at the All India Institute of Medical Sciences.
Was this scientific adventurism, or was it borne out of a realisation that all other contraceptive methods could not/would not quite fit the bill when it came to controlling the ‘runaway’ population of the third world?
WHO-speak tells a tale
The WHO Task Force on vaccines for Fertility Regulation was established in 1973 to ‘investigate the feasibility of inhibiting reproduction by immunological means’. ‘Because of the large number of questions that require to be resolved, this development effort may be considered high risk and fairly long-term (10-15 years). However, the impact of a vaccine, to be used either by men or women, especially in developing countries, would be so great as to warrant this involvement.’(WHO Annual Report 1974). (Emphasis added).
WHO’s annual report of 1976 says, ‘The potential advantages of an immunological approach to fertility regulation are that active immunization with an Anti-Fertility Vaccine could provide long-acting fertility control, the vaccines could be administered by paramedical personnel and large-scale manufacture of vaccines at relatively low cost may be possible’.
Clearly, the motivation behind this research was not the ‘felt need’ of potential users just as it was not for injectable contraceptives and implants. But one can clearly hear the clink of cash registers! Contraception is also big business—and we should not forget it.
Researcher’s dream, women’s nightmare
For the women’s movement, the immunological approach to contraception created something of a panic. On the one hand it brought up images of horrific consequences, on the other it severely challenged the capacity of ordinary women to comprehend the complexity of the immune system. Grasping the ramifications of hormonal contraceptives had been hard enough.
What is the Anti-Fertility vaccine?
The human body fights what it recognises as ‘foreign’ to itself, and then builds up immunity against it. This self-protecting mechanism is used in vaccinating/inoculating people against some disease.
A similar outcome is sought in the attempt to create an anti-fertility vaccine. A foreign product such as tetanus toxoid is linked to a hormone such as hCG (which is not ‘foreign’ in itself) so as to cheat the immune system and produce immunity against hCG. If the woman’s immune system can be cheated successfully, vaccine will work and she will not get pregnant. If the woman’s immune system cannot be cheated, the vaccine is of no use to her. If the cheating is discovered soon enough, the effect of the vaccine lasts for a very short period (as has been the case in most instances).
Despite animal studies, there was no satisfactory answer to multiple questions regarding the safety issue, which were a major concern of the women’s movement. The question of long term effects on the progeny in case of failure of the vaccine was crucial. Effects on the functioning of other hormones important in the reproductive process due to vaccination was also important. The other concerns of the women’s movement in this context were:
- Unethical clinical trials
- Lack of informed consent
- Potential for abuse
- Inadequate health delivery system
A truly international campaign
While the international women’s movement has always been supportive of our efforts in campaigning against hazardous contraceptives, they have not had to deal with the problem of ‘overpopulation’, coercive population control except with the ‘undesirable’ segments of their population (blacks, Hispanics, mentally retarded etc.). However, since developments on the AFV were taking place simultaneously around the world, indeed India seemed to be leading the pack, the response of the women’s movement was also more synchronised.
After the launching of the International Campaign to Call a Halt to Research in 1993, a correspondence was initiated with the funders of the research on AFV, raising concerns about the health hazards, potential for abuse and unethical trials of these vaccines. Women’s groups from India, who were signatories to the campaign, put pressure on the Indian investigators to hold discussions with them.
A meeting of 30 women’s health activists with the International Research Development Centre (IDRC), Canada in 1995, and continued pressure for more than two years, was instrumental in the discontinuing of funding of the next Phase of trials. Saheli continued, until 1998, to pursue the IDRC to pressurise them to fulfill its responsibility in following up women who had participated in the clinical trial.
In 1996, Saheli took forward the international campaign, by initiating a post-card campaign urging the WHO to stop research on AFVs. The postcard, which could be cut-out from the newsletter and posted to the WHO office in India, demanding a stop to research on AFV, met with overwhelming response.
In November 1998, Saheli, along with several other women’s groups staged protests at the venue of the International Immunology Congress in New Delhi. Some of us attended the official sessions as delegates and raised questions during the time allotted. Distribution of pamphlets articulating our view also led to dialogue with scientists attending the Congress. We also held a parallel conference in Delhi, strategising with like-minded groups from all over the world.
In addition to the scientific concerns raised from within the community, the pressure that women’s groups put on the scientific community and the funders finally paid off. The concerns raised were considered serious enough that the hCG-based Indian vaccine was never tested in the next phase of clinical trial. As far as we know, the funding agencies have shelved any further development, testing or marketing of this vaccine as an AFV!
One of the significant points emerging from the campaign against AFV was the co-option of the jargon of the women’s health movement by ‘women health advocates’ who purportedly speak on behalf of women. These women (and men too!), in influential positions on various boards and panels of the scientific establishment such as the WHO, supposedly speak the same language as those in the movement. For instance, Dr. Talwar, one of the pioneers of AFVs in India, claimed he was against long acting contraceptives because the user cannot control them!
Taking stock: We won many battles, but the war
Twenty five years is a long time. And it is tempting to ask what we have achieved after all the court cases, public hearings, joint Parliamentary Committees, Lok Sabha questions, lobbying with MPs, press statements, writing numerous articles, letters to ICMR, MOHFW, Drugs Controller, NCW, networking with groups in India and abroad, posing as decoy patients, storming meetings, seminars, signature campaigns, producing documents, performing plays, singing songs, distributing parchas, leaflets, posters, sitting on dharnas, marching in rallies…
E.P. Drugs, 1997, nine years after the Ban: Drug companies seek permission from the DCI to market E.P. drugs for post menopausal women and Hormone Replacement Therapy and make out a case of how these are beneficial in fighting osteoporosis etc. They include letters from experts in India and abroad. The DCI writes to Saheli seeking our opinion in the matter. No we are not the ICMR, and are unlikely to have kept abreast of technical literature on E.P. drugs. In writing to us, they can cover their bases by saying they did consult us, and then go right ahead and do what they always wanted to do anyway. We are put in a dangerous place, and so the war continues... In any case, we are hardly in a position to monitor over-the- counter sale of drugs, or monitor prescription practices of doctors.
Sex Determination tests: We succeeded in getting Central legislation against Sex Determination and Sex Pre-selection but we are not in a position to monitor genetic clinics, and follow up on malpractices. Technologies are difficult to keep up with, and ultrasound is difficult to control. Mindset of people and son craziness will take some time to change. We cannot be the vigilance committee and so...
Net-En, and Depo-Provera: It could be considered a major achievement that were not introduced into the FPP for 14 long years. However, it appears that ICMR is not willing to give up on injectables. In 2002 it initiated a pre-programme introduction study on Net-En, the progress of which was reported publicly only for two years.
Norplant: It seems that a pre-programme introduction study on Norplant has been initiated in some states of India. However, precise information is not available.
Quinacrine Sterilisation: QS was never officially approved, but to prevent misuse, it was banned in 1998. However, it continues to be used in some parts of India, notably in West Bengal.
Anti-Fertility Vaccine: Research on the AFV has reached an impasse since 1998.
Informed Consent: In demanding informed consent and the enforcement of ethical guidelines, we have made some headway. ICMR, due to pressure from women’s groups and health activists, had to revamp its guidelines of 1980. Twenty years later in 2000, ICMR brought out revised guidelines which still lack adequate protection for subjects of trials. However, the notion of accountability and individual patient’s rights has begun to be accepted, albeit reluctantly.
Improved health care services: Post liberalisation, there has been increasing privatisation of health care. Few attempts are being made to upgrade the health facilities of the poor, especially the rural areas, which is the ‘target population’ whose fertility has to be controlled. Therefore, the safe delivery of hazardous contraceptives on a wide scale seems most unlikely.
Population Policy: Since the government is unlikely to give up its mantra of ‘population explosion’, this is an issue which we will have to continue to battle. International pressure on the government to control population compounds the problem for us too.
WHO: Because of its global reach, and links with a host of agencies world wide, the pronouncements of WHO have far reaching impact. They are beyond our reach, due to diplomatic immunity, and cannot be sued by us as the ICMR was. WHO instituted a Gender Advisory Panel several years ago, and continuously talks about gender perspectives, but how this will be translated into reality is a question. However, international pressure from women is forcing them to start dialoguing with us.
ICMR and Drugs Controller of India: We have been writing to them for the past 25 years, seeking information, making demands, protesting outside their office—all to no avail. They continue to function behind a cloak of secrecy, not parting with information on on-going research and developments. This cageyness continues despite their soliciting our cooperation in promoting women’s health.
Co-option of the women’s movement: The language of the women’s movement has been adopted by all and sundry, from international and multilateral agencies, to funders, to funded NGOs working on all kinds of issues. It has become very easy to get representation of women in any forum. The increasing NGO-isation and donor funding for reproductive health and population issues is tending to skew the priorities of the women’s movement. Lines are getting blurred and agendas and motives difficult to separate, as was the case with the ‘feminist’ population policy. The autonomous women's movement may soon be placed in the ironical position of fighting the Gender Advisory Panels!
The Press has played a vital role in all our campaigns. Many significant moves of the government or ICMR were brought to our notice by newspaper articles. Given our limited reach, the press has played a vital role in reaching out to a wider audience, even though from time to time they have been critical of us and the manner in which we protest. Of late, the population control mantra seems to be overriding their concerns.
Autonomous women’s movement: We have come a long way in terms of ability to tackle women’s health issues. While we have gained considerable conceptual clarity, forged strong links nationally and internationally, our biggest drawback stems from our lack of direct outreach.
Joint forums for action: Being a small organisation, Saheli has continuously sought to form alliances with others—women’s groups, women’s wings of political parties, health groups, science groups, consumer groups etc. As with all broad based alliances, a common programme has to be thrashed out, and all issues of concern to us may not find acceptance.
Legislation: Despite our reluctance to use legal measures, they have been used in most of the campaigns, either by us or others, to good effect. It was the PIL filed by Vincent Panikulangara, a Cochin based lawyer, in 1982, against the continued sale of banned drugs including E.P. drugs, that got the Supreme Court to order public hearings. Similarly, though the enactment of a Central legislation to restrict the use of technologies for sex determination was a demand of the autonomous women's movement, and it was enacted in 1994, it remained an ineffective piece of legislation until a PIL was filed by CEHAT et al., for the PC-PNDT Act, 2002 to come into being. PIL was used in the case of Net-En, and Depo-Provera also reached the Supreme court, due to an intervention application filed by Jagori et al. in a case filed by Drug action Forum against hazardous drugs. And then, a PIL was also filed by All India Democratic Women’s Association et al. in 1998 against Quinacrine.
All this litigation has basically served the purpose of highlighting issues and in certain cases compelling the concerned agencies to stop, and take some conclusive action. Also the results have sometimes come tangentially.
However, as all these matters are technical in nature, and the court does not directly pass rulings on them, we have not been able to set any precedents. Consequently each new hazardous drug/contraceptive/medical procedure has to be battled afresh.
Pressurising government agencies/lobbying/making representations: We have been able to successfully lobby to get some questions raised in Parliament, or through representations to the MoHFW, get to interface with the Department of Health and FW and then with the ICMR. We have written numerous letters to the DCI and the ICMR, but the response has either not been forthcoming, or it leaves much to be desired. While we would like an open sharing of information and discussion, which does not happen, we are invited to meetings more as a rubber stamp than anything else. Sometimes ICMR calls meetings and includes women’s representatives, carefully excluding women’s groups that have been working on the issue.
International alliances: The nexus between the government, donor agencies, research agencies and trans-national pharmaceutical companies has necessitated forging links internationally with like-minded women’s groups and health action groups. This has enabled applying pressure in a targeted manner in whichever part of the world significant events were taking place. Besides intervening in meetings and seminars and staging demonstrations, signature campaigns and petitions have also been effectively used. We have chosen to participate in the numerous international meetings very selectively. Saheli has been a member of the Women’s Global Network for reproductive Rights (WGNRR), the Feminist International Network Against Genetic Engineering (FINRAGE), Quinacrine Alert Network among others. Several friends in various parts of the world have been consistently supporters and sources of information.
Direct Action/Taking the Campaign to the Streets:We always felt the importance of reaching out to ‘women at large’ with information. Seminars, poster campaigns, working with other women’s groups to collect information, gathering evidence through decoy customers, dharnas, demonstrations at the Health Ministry (Nirman Bhawan), songs about injectables and a play about Norplant.
Various forms of protest:By now, autonomous women's movements have come up with a wide variety of ways to take issues to the streets and to reach a wide audience. Among the more recent ones was the postcard campaign used in the campaign against AFV. The reluctant, though necessary, inclusion of computers has not only made networking easier, but is likely to generate a few more novel ways to protest. All the same, our outreach is limited, particularly in the rural areas.
Saheli and the autonomous women’s movement has faced a lot of criticism for our opposition to hazardous contraceptives. We are perceived as ‘trouble makers’ intent on disrupting the smooth functioning of government agencies working in the best interests of the country. Twenty-five years ago, we were labelled as trouble makers intent on breaking up families. Times have changed, not the dynamics of the forces that shape women’s lives in India.
Significantly, despite ‘making trouble’ for 25 years, on a lot of the same issues, the establishment has not been able to meaningfully address any of our concerns. ‘Gender perspectives’, ‘gender concerns’ etc. grace the pages of many documents of the government, international agencies and the WHO. Earlier, the term was ‘user perspectives’. But for how long can one hide behind words?
The stark fact is that women need safe, effective, contraceptives in their control. None of the recently available methods fulfil the needs of women on a large scale. If they did, nobody, including the entire international women’s movement could have prevented women from using them!
In this day and age of market forces driving the world perhaps policy makers should forget ‘social marketing’ for the time being and learn ‘product development’ strategies from the manufacturers of consumer products. The concepts of ‘informed’ users, after-sales service, replacement of equipment, etc. may help them understand the problems people face as users. This is not to advocate privatisation of health care. It is merely to suggest that if as much attention were given to user and gender perspectives as is given to user concerns in developing refrigerators and automobiles, we may have been a different place now. Who knows? Happy contraceptors may have dramatically lowered the birth rate all by themselves!
Hazardous contraceptives are a big worry, but more worrisome are the host of new reproductive technologies, stemming from genetic engineering, cloning, pre-implantation genetic diagnosis; creating embryo farms and promoting surrogate motherhood, that totally alter the nature of the debate in terms of ‘rights’, ‘interests’, ‘choice’ and of course ethics. These technologies raise issues that skew even more the status of women in society, and their right to live a life of dignity.