Women's GlobalNet #276: Activities and Initiatives of Women Worldwide June 26, 2005
FIJIAN FEMINIST WHO FOUGHT FOR PEACE, JUSTICE AND EQUALITY IN THE SOUTH PACIFIC
Amelia Rokotuivuna August 7, 1941 -June 2, 2005
On June 2, 2005, a woman of extraordinary energy, passion and ability who dedicated her life to promoting peace, democracy and social justice,died in Suva, Fiji, at the age of 63.
Amelia Rokotuivuna was a community leader far ahead of her time, who grew up in the Fiji mining town of Vatukoula and went on to become head girl of Adi Cakobau School, Fiji's most prestigious college for girls. She was a founder of the Fiji YWCA, joining Australians Ruth Lechte and Anne S. Walker in 1962 to begin the programmes of an activist organization that worked for peace and democracy in a multi-cultural Fiji. In 1967, she attained a diploma in social administration and development from the University of Swansea in Wales, returning to become General Secretary of the Fiji YWCA in 1973.
For the next two decades in this position, Amelia led the fight on issues such as equal rights for women, a nuclear-free Pacific, political reform and multi-culturalism. She advocated for those without a voice,reminding the great and powerful of their obligations to the poor and disadvantaged. Referring to her charismatic leadership of the Y during those years, Dr. Wadan Narsey, formerly an economics lecturer at the University of the South Pacific (USP) and regular columnist with the Fiji Times, wrote: "As an Indo-Fijian non-Christian male, I found myself on YWCA committees on issues such as economic justice, constitutional reform, the anti-nuclear movement and numerous other important issues of the time."
In furtherance of her anti-nuclear beliefs, Amelia took centre stage at the non-governmental meeting held parallel to the first United Nations world conference on women in Mexico City, 1975, speaking out against nuclear testing and raising the awareness of the world regarding the continuing abuse of the Pacific and its peoples by nuclear powers.
The Fiji coups in May 1987 demonstrated the real character of Amelia. Never was her fearlessness and true grit more splendidly displayed. She defied many of her own people to commit to a multicultural, tolerant and caring vision of Fiji. Amelia, among others, was imprisoned briefly for her beliefs.
From 1992 to 1995, Amelia worked as Programme Secretary for Advocacy for the World YWCA in Geneva. At the time of her death she was President of the Fiji YWCA Board of Directors and a lecturer at USP.
Amelia leaves behind a son, Peceli, who continues her work as a community activist, brothers Apisalome (Mudu) and Sevuloni, sister Veniana and their families, and the family of sister Manaini (dec.). She will be sorely missed by family and friends alike, but her life spent in the search for peace, equality and justice in Fiji and the South Pacific will be forever cherished and celebrated.
Written by Anne S. Walker, AM, with excerpts from eulogies by Fiji Senator 'Atu Emberson Bain and Ratu Joni Madraiwiwi, Vice President of Fiji.
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DifferenTakes is an investigative series of issue papers, published by the Population and Development Program at Hampshire College in Amherst, MA, providing alternative information and analysis on a wide range of reproductive rights, population, environment, peace and social justice issues.
We are pleased to send you our 35th issue, "The U.S. Occupation and Rising Religious Extremism: The Double Threat to Women in Iraq" by Anissa Hélie who has worked since 1984 with the organization Women Living Under Muslim Laws. This issue critically examines how both the U.S. occupation and Islamic extremism threaten women's rights and lives. It draws attention to the problematic tendency of many progressives in the West to romanticize the Islamic insurgency in Iraq and Islamic fundamentalist movements in their own countries while ignoring their negative impact on women.
- Betsy Hartmann and Amy Oliver Co-editors, DifferenTakes
The U.S. Occupation and Rising Religious Extremism: The Double Threat to Women in Iraq
On February 8, 2005, the international feminist and anti-militarist network Women in Black (WIB) launched an urgent appeal for the immediate liberation of Giuliana Sgrena, an Italian journalist and WIB activist, who had been kidnapped in Iraq by a militant Islamist group (and who was later shot by U.S. forces as she was en route to safety). Three days after the appeal, various WIB groups around the world had mobilized, holding 463 silent vigils across several continents. While this was an impressive display of both the efficiency and strength of women’s global solidarity, the incident remains just a snapshot of the mounting acts of violence against women in Iraq.
With about 140,000 troops currently deployed and a mounting death toll, the U.S. occupation of Iraq raises numerous issues, ranging from allegations of war crimes to the backing of a new Iraqi government based on tribal, ethnic and religious affiliation – a fact likely to have long term implications for the region. However, the Iraqi context is marked not only by the U.S. occupation, but also by the rise of an extremist Islamist armed insurgency that is targeting women. The left needs to avoid romanticizing forces that, despite their claim to be primarily opposed to U.S. imperialism, in fact pursue a fundamentalist agenda in Iraq. The left also needs to heed and challenge the steady incursion of the Muslim religious right in the West.
Mounting Violence Against Women The ongoing trend of violence against women in Iraq should be seen in the broader context of human rights violations perpetrated by U.S. forces against detainees and civilians, including children. Indeed, the dehumanization of anyone identified as ‘Arab’ or ‘Muslim’ post 9/11 and a culture of institutionalized racism within the US army have led to many acts of brutality. There is serious evidence, corroborated by Amnesty International and Human Rights Watch, that jailed Iraqi women have suffered abuse and torture at the hands of the U.S. military.
The breakdown of society in Iraq provoked by the U.S. occupation has also had a detrimental impact on women. The current security situation is so poor that parents are reluctant to send their daughters to school unaccompanied and large numbers of teenagers have now abandoned pursuing their studies. Threats of sexual violence and murder have also led professional women to quit their jobs. Iraqi women and girls (some of them as young as nine years old) are abducted for both ransom and trafficking purposes.
Widespread violence also affects women’s political participation: following the 2003 murder of Akila al-Hashimi (one of only three female members of the Governing Council), many activists were forced to retreat from the public sphere. Yet a recent survey on “post-war” Iraqi women shows how much they continue to value access to political and legal rights. This study, undertaken in January 2005 by the Washington DC-based Women for Women International in collaboration with the Iraq Center for Research and Strategic Studies, is another example of women’s international solidarity.
In addition to the destruction of basic infrastructure, an overwhelming lack of security, and violence at the hands of U.S. occupation forces, the emergence and rise of religious extremism pose new threats to Iraqi women’s lives. In a move that goes beyond seeking to impose a rigid gender ideology, fundamentalist armed groups specifically target women in order to induce fear and helplessness among ordinary citizens. This is often a prelude to imposing an Islamic state. The work of Women Living Under Muslim Laws (WLUML) shows there is a pattern in Iraq that has been repeated in many other contexts: violence against women as a form of political intimidation is one of the strategies extreme-right religious forces systematically employ. As they seek to secure political power, fundamentalists of various creeds (whether Hindu, Muslim, Christian, etc.) often begin by intimidating, persecuting, abducting and murdering women as well as minorities. Religious, ethnic and sexual minorities are especially at risk. Fundamentalist forces then move toward terrorizing all other citizens who may oppose their authoritarian theocratic project.
For example, an extremist group in Iraq called Mujahideen Shura (council of fighters) warned it would kill any woman who is seen unveiled on the street. The recent case of Zeena Al Qushtaini has shown this is not an empty threat. Zeena, a women’s rights activist and businesswoman known for wearing ‘Western’ clothing, was kidnapped and executed by Jamaat al Tawhid wa’l-Jihad, another armed Islamist group. Her body was found wrapped in the traditional abaya which she had refused to wear when she was alive. Pinned to the abaya was the message: “She was a collaborator against Islam.” Muslim extremists have already moved on to assassinating male and female hairdressers whom they accuse of promoting ‘Western’ fashion. They also specifically target trade union leaders as well as gays and lesbians. Religious minorities are also under attack, such as Christians in the Northern city of Mosul – with women from the Christian community singled out in a rape campaign.
Given their political project and the violent tactics they employ, how can such militant groups gain any legitimacy in the West? It is necessary to reflect on the nature of the language used to refer to these increasingly powerful political actors.
Romanticizing “Resistance” Western mainstream media and human rights organizations tend to describe these militants’ acts of violence using terms such as “insurgency.” There is also a tendency within some leftist and feminist circles to label Muslim extremists - who kill, rape, kidnap women and girls and openly target civilians - as “the resistance.” This is highly problematic in that the word “resistance” has a revolutionary, heroic connotation that leaves unchallenged the political agenda pursued by fundamentalist factions in Iraq. In the U.K., leading voices from the left further romanticize the Iraqi “armed resistance against imperialism,” even comparing it to independence struggles in Vietnam and Algeria. It is worth remembering that there are plenty of unarmed civilians, as well as groups of every political affiliation, that reject the U.S. occupation yet do not engage in violence or human rights violations. Islamist fighters should not be confused with national liberation movements.
The “resistance” label is politically misleading in the Iraqi context, at least as far as Muslim fundamentalist groups are concerned. It is inadequate because the emphasis is narrowly placed on a rejection of U.S. occupation. Despite the anti-imperialist claims made by the leaders of armed groups, it seems very unlikely that if or when U.S. troops withdraw, persecution of women or religious and sexual minorities will stop – because what is really at stake is a theocratic agenda. Referring to “resistance fighters” is also dangerous because it valorizes and glorifies Muslim right-wing militants. It renders invisible the authoritarian nature of extreme-right movements that use religion, culture and ethnicity to impose their project of society onto people.
What we have in Iraq is violence. What we have is a struggle for power, with various forces using extremely violent means – and different discourses. Some use dialectics of “democracy” and “importing freedom,” while others use the “resisting imperialism” rhetoric.
The current situation in Iraq sadly illustrates the knee-jerk thoughtlessness with which some progressive constituencies in the West adopt a language that blurs complex political realities. Even more worrisome is the increasing tendency for left-identified individuals and groups to lend support to right-wing Muslims on the basis of their (alleged) anti-imperialist stand. Growing numbers of activists embrace short-sighted strategies, insisting for example that the Western “antiwar movement must not lose sight of the fact that its main enemy is at homeand any resistance to that enemy deserves our unconditional support.” What is alarming about this statement is the immediate allegiance to unconditional support, without regard to the ideologies, practices, and acts of violence of those groups.
In Muslim contexts, as elsewhere, there are progressive and reactionary voices. Somehow, these political standpoints become blurred as segments of the Western left seem to adopt the strategy of “the-enemy-of-my-enemy-is-my-friend,” even though Khomeini’s post-revolutionary Iran should have taught us that it is indeed misguided to confuse anti-women, anti-minorities, anti-diversity voices with those of feminists or progressive advocates. This ideological confusion is not lost on Muslim fundamentalists – who are anything but politically naïve. In fact, their soft-spoken leaders actively take advantage of a misplaced white guilt to expand their hold on the West. The bloody hands threaten and the educated intellectuals charm: such is the division of labor for these extremists.
Aware of the reality of racism and in an effort to befriend the oppressed, a “Muslim perspective” on just about anything is sought by progressive forces in the West, from playwrights to academics or (often self appointed) community leaders. Conservative voices, it seems, are seen as the most authentic. Liberal ones, somehow, lack the sweet perfume of exoticism. Hence, dangerously rigid standpoints are offered as the “true” expression of all Muslims. Space for dissent becomes monopolized by fundamentalists, at the expense of secular, feminist, and pro-democracy advocates.
Three recent examples highlight this point. In Ontario, Canada, so-called “moderate” fundamentalist groups lobbied to introduce Shari’a (the interpretation of Muslim jurisprudence that in some countries has condoned penalties like whipping, amputation and stoning to death) so that the “Muslim community” can resolve family conflicts without interference. There are similar pressures in Manitoba and Quebec, as well as in Europe and Australia. Despite the fact that laws framed with reference to religion have proven to be extremely detrimental to women’s rights in numerous contexts, the “multicultural” argument leads many on the left to blindly support an oppressive agenda.
In a less naïve and more strategic move, the U.K. Labor government, as it introduced its new Equality Bill in February 2005, decided to prioritize discrimination on the basis of religion and disregard discrimination on the basis of sexual orientation – for fear that “Muslims might feel offended if they were ‘lumped together’ with homosexuals.” One can only wonder how British gays and lesbians from the Muslim community will appreciate the sacrifice of sexual rights on the altar of religious freedom.
Finally, the last European Social Forum (ESF), held in London in October 2004, was – in the tradition of the larger World Social Fora - meant to bring together large numbers of activists committed to debate issues such as “imperialist globalization, religious sectarianism, identity politics and fundamentalism.” Sadly, ESF organizers took pride in inviting a number of extremist Muslim leaders. At the same time, they actively discouraged more progressive initiatives - such as a proposed panel including speakers from various feminist groups and international networks (WLUML, WIB, Women Against Fundamentalism, Catholics For a Free Choice and Act Together). While the Muslim Council of Britain and other similar endeavors could boast access to all available facilities in the several panels they organized, the feminist panel’s request to obtain translation facilities was turned down. One wonders whether it was because the feminists’ focus on "unholy alliances" between the left and Muslim extreme-right forces was deemed too threatening.
Building Real Solidarity These are not isolated incidents, and warnings about such alliances on such a broad scale have been circulated by international feminist groups. Fundamentalism’s proponents seek support from progressive forces by appealing to the very ideals the left stands for, such as equality, anti-racism, and freedom of expression. At this time in history when one can witness extreme-right offensives gaining ground (whether in the U.S. with the Christian right, in India with the Hindutva forces, or in Iraq, Bangladesh and elsewhere), the need for international solidarity becomes all the more urgent. To avoid lumping together cultural and religious identities and to recognize that not all those born in Muslim contexts happen to be believers, or choose to define themselves primarily on the basis of their faith, would be a good start. Indeed, with fundamentalists building coalitions across cultural and religious divides, we ourselves – as progressive people and as feminists of various horizons - should devise common strategies of resistance to groups who practice violence and oppression toward women and people in general. This is a matter of priority and an opportunity to further strengthen our global solidarity.
Anissa Hélie is a feminist historian by training and an activist by choice. In 2005 she was a recipient of a research/teaching Ford Foundation Fellowship at the Five Colleges, Inc. in Amherst, MA. She has worked with a wide range of women’s groups and human rights groups in various countries, focusing on issues of sexuality, fundamentalisms and reproductive rights. She has been involved with Women Living Under Muslim Laws since its inception in 1984.
The Population and Development Program CLPP • Hampshire College • Amherst • MA 01002 413.559.5506 • http://popdev.hampshire.edu Opinions expressed in this publication are those of the individual authors unless otherwise specified.
Refer Feminist Research: Corea, Gena. The Invisble Epidemic: The Story of Women and AIDS (New York: Harper Collins Publishers Inc., 1992, and at the time widely acknowledged as the female equivalent of Randy Stilts' classic, And the Band Played On .... , plus in December of 1992 was listed in The New York Times Book Review "Notable Books of the Year".
In other words, a decade-plus of neglect which largely accounts for research into the highly promising protective measure of microbicides still being in its infancy in 2005, even as the feminized face of HIV/AIDS becomes more and more obvious. Under which rock have the the below mentioned "experts" been hiding since 1992? =========================== Pakistan Saturday June 11 2005-- Jamadi Al Awwal 03, 1426 A.H.
Women: more vulnerable to HIV
HIV/AIDS is rapidly becoming a woman's epidemic. Approximately 14,000 people become infected with HIV every day, half of them women Bobby Ramakant
Global HIV data -- tragically -- confirms what women's health, rights, and social justice advocates have said for a decade. The social, economic, and sexual vulnerability of women -- particularly young women and girls -- harms their health and increases their risk of HIV and other sexually transmitted diseases (STDs). Existing prevention strategies have largely failed to address this vulnerability, focusing on abstinence, mutual monogamy and male condom use -- none of which are easily controlled by women. The faces of HIV and AIDS in the world today are increasingly those of young women, many of whom are married, many of whom contracted the virus during adolescence.
Predictably, HIV/AIDS is rapidly becoming a woman's epidemic. Approximately 14,000 people become infected with HIV everyday. Half of them are women. A vast majority of women had only one mode of exposure to HIV -- sex with their male partners. Women are biologically more vulnerable to STD including HIV/AIDS. Women are twice as likely as men to contract HIV from unprotected intercourse. Vaginal membranes are exposed to infectious fluids for hours after sex; younger women are at greater risk because the immature cervix is more vulnerable to damage and infection. STDs often go undetected, and therefore untreated, in women. They increase women's vulnerability to HIV and if untreated, can lead to infertility, ectopic pregnancy, infant mortality and cervical cancer.
Gender inequalities prevent many women from being able to protect themselves. Millions of women lack the social and economic power to insist on HIV prevention measures, such as condoms, abstinence or mutual monogamy. Male and female condom use requires the tacit cooperation, if not outright participation, of the male partner. HIV risk escalates among adolescent girls because of their physical vulnerability and susceptibility to rape, forced marriage, trafficking, economic dependence and coercion. Violence, coercion, and economic dependency render millions of women of all ages unable to "negotiate" condom use or to abandon partners who put them at risk. Millions live in societies that permit them no role in sexual decision-making, condone male infidelity and assign to women the burden of shame and stigma associated with infectious disease.
But there is always hope that not only gender inequity might change for the better, and women and men will recognise, appreciate and respect the rights of each other, but women will have more meaningful roles to play in decision-making, and will be empowered enough to access, afford, use and negotiate the use of STD/HIV prevention options with their partners. This struggle will indeed be a long one.
Some dedicated advocates, scientists and donors are working to develop microbicides -- gels, tablets, or other intra-vaginal products a woman could use to reduce the risk of getting HIV through sex. Microbicides are substances that can substantially reduce the transmission of HIV and other sexually transmitted infections (STIs) when applied vaginally and, possibly, rectally. Epidemiological models suggest that a microbicide with 60 percent efficacy could avert 2.54 million HIV infections worldwide over three years.
However, microbicides are still being researched; it will require significant political will, public investment and popular demand before they become available. Microbicides are at different stages of research in a number of countries. They could be produced in a variety of forms: gel, cream, film, suppository, sponge or vaginal ring. Some would enable women to become pregnant without risking infection, while others would also be contraceptives, offering women a dual protection method.
Many studies have reported that women who perceive themselves at risk for HIV had little success in asking their husbands to use condoms. While condom promotion has encouraged men to use this protection with sex workers and casual partners, most men still refuse to use condoms with wives or regular partners. No wonder HIV cases are increasing rapidly among married, monogamous women in countries like India. Microbicides will certainly help these women to protect themselves from STI/HIV.
Many women want to get pregnant -- for their own reasons and/or to achieve the status and security that, in many societies, they can only attain through motherhood. Since condoms are contraceptive, women now have to choose between childbearing and HIV prevention. Microbicides offer a ray of hope here too, being developed into two variants: contraceptive and non-contraceptive, which will make it possible for a woman to conceive without exposing herself to the risk of HIV transmission.
Microbicides must be safe for all potential users -- women and men, pregnant women, HIV-positive women, adolescents. They must also be compatible with condoms and other barrier methods. Potential mechanisms of microbicide action include: killing or inactivating the virus by disrupting the surface membrane (surfactants), boosting the vagina's natural defences (acidifying agents), or preventing the virus from binding to its target cells (adsorption inhibitors), blocking replication of the virus once it has entered cells.
There are about 60 possible microbicides in the pipeline. Six potential products are likely to enter the phase of large-scale multi-centric clinical trials soon to assess effectiveness in prevention of vaginal transmission of HIV. These products include the surfactant (Savvy), the acidifying agent (buffer gel), and the adsorption inhibitors (PRO 2000, dextrin sulphate, carageenan and cellulose sulphate).
There are also some barriers to widespread support for microbicides. Morally conservative and patriarchal social norms make it difficult to confront the reality of a sexually transmitted epidemic. A culture of silence around women's sexuality enhances the stigma associated with seeking information or interventions about self-protection.
Much progress has been made on microbicides, but many challenges remain. Badly needed is a significant increase in investment from both the public and private sectors.
Another challenge is to involve men and try to address the unequal power equation between a man and a woman, thereby increasing the understanding of each other's need, and collectively demand: HIV prevention must address women's needs and vulnerabilities. Women need education, economic opportunity and social support, and gender equality in order to protect their health and rights. Women need HIV and STI prevention tools they can control. Women need microbicides.
The writer is a key correspondent for Health and Development Networks, Thailand, and volunteers as AIDS Care Watch campaign coordinator for South Asia
DifferenTakes is an investigative series of issue papers, published by the Population and Development Program at Hampshire College, providing alternative information and analysis on a wide range of reproductive rights, population, environment and social justice issues. This spring we are launching a special series of DifferenTakes focusing on 'Reviving Reproductive Safety' in movements for women's health and reproductive justice.
We are pleased to send you the fourth fifth in the series, "Quinacrine Sterilization in India: Women's Health and Medical Ethics Still at Risk" by Rajashri Dasgupta. This issue explores health risks and ethical controversies associated with the use of quinacrine sterilization, a method banned in India in 1998 but which is still being used by medical practitioners in in the country to sterilize women.
- Betsy Hartmann and Amy Oliver Co-editors, DifferenTakes Download .pdf format here ^^^^^^^^^^^^^^
Quinacrine Sterilization in India:Women’s Health and Medical Ethics Still at Risk
Women’s groups in India are only too aware that the “real battles” are fought outside the court room. In 1998, when the Supreme Court of India banned quinacrine sterilization (QS) because its long-term effects on women are unknown and are potentially harmful, activists knew they had to continue the struggle outside the courts. Their fears proved true when a group of medical practitioners violated the ban on the use of the drug for female sterilization.
A study conducted in 2003 found that five years after the ban, medical practitioners in India were still using quinacrine to sterilize women.1 None of the women interviewed knew that QS was an unauthorized method, with potential health hazards. Most of the women who underwent QS said that the provider never asked them to sign or give their thumb-print on any consent form or other document. The few who did sign forms said that they were not aware why they were asked to do so. "It calls into question any claim that informed consent was given by these women, thus violating their human rights," stated Shree Mulay, Director, Centre for Research and Teaching on Women, McGill University, Canada, who led the team of researchers based in Kolkata, the capital city of West Bengal, the Indian state bordering Bangladesh.2
QS is a non-surgical, permanent method of sterilization by the synthetic anti-malarial chemical quinacrine. When quinacrine pellets are inserted into the uterus through an intra-uterine device, they dissolve, form scars and block the fallopian tube to prevent fertilization.
In 1997, women's health advocates around the world were alarmed to discover that large-scale clinical trials had been conducted with QS on over 100,000 women in 25 countries. An ardent proponent of QS, Dr. Ashi Sarin, claimed in a telephone interview that at least one-fifth of the QS cases in the world were done in 26 centers in India before the ban. Sarin herself has conducted 134 QS procedures among ‘high-risk’ women and found it to be effective. "In most countries like India the trials were covert. We are concerned that women are being targets of unethical drug trials," said Mohan Rao of the Public Health faculty of Jawaharlal Nehru University (JNU) in Delhi.
It was this concern that led to intense campaigns by women’s groups in several parts of the country. Protest demonstrations were held in front of clinics of doctors practicing QS in the cities of Delhi and Kolkata. Saheli, a prominent women’s rights group, published an in-depth study that countered the arguments put forward by QS advocates and media reports questioned the government’s failures in regulating and monitoring illegal drug trials. To further strengthen the growing movement, the faculty of Public Health at JNU joined hands with the All India Democratic Women’s Association to file a public interest litigation that finally led to the Supreme Court ban on QS.
Two years later in a workshop in Kolkata, a study with a feminist perspective was developed to document women’s experiences of QS, determine if there are any deleterious effects, investigate whether QS is being used after the ban and find out whether women were aware that QS was an experimental method. The workshop participants were women’s health advocates, academics and media personnel, many of whom had been involved in the movement against QS in India, Bangladesh, the USA and Canada; they supported the study team with ideas and advice during the entire research period.
Given limited resources, a larger population-based study was not possible. Instead the study in West Bengal would conduct in-depth interviews with 32 women in one region who had undergone quinacrine sterilization, followed by medical examination offered to those who wanted one. An equal number of women who had undergone surgical sterilization (SS) were selected using parity parameters such as socio-economic status, current age, age during the sterilization procedure, and reproductive history at the time of the study.
In 2003, the study was released in Kolkata with the support of women’s activists and the Women’s Commission of West Bengal, a statutory body. It found the striking difference between the QS and SS women was that the former had several cases of cervical erosion and inflammation, requiring long-term follow up. Thirteen of the 32 QS women “bled on touch” during internal examination, and the cervices of 13 were diagnosed as "clinically unhealthy” and “ulcerated,” and had “growth,” therefore requiring further microscopic investigations, according to Dr Sanjeev Mukherjee, a Kolkata-based gynecologist who conducted the medical examination.
In the last decade worldwide unethical QS trials received a series of setbacks. In 1998, the U.S. Food and Drug Administration (FDA) asked the two Americans, Dr. Elton Kessel and Stephen Mumford, the spirit behind the trials, to halt immediately the distribution, import, manufacture and export of quinacrine pellets for female sterilization. Earlier in 1994, the World Health Organization (WHO) had cautioned researchers to stop all human trials until laboratory and animal testing was complete, the first essential steps in the development of any new drug. But it was the Indian ban that was an “enormous setback” for QS worldwide, said Dr. Mumford, as it “undermined the efforts of individuals in numerous other governments to have their own governments undertake national clinical trials.”
QS is promoted in countries like India by a network of doctors (like Sarin) in urban areas, who in turn train rural practitioners and supply them with pellets. In West Bengal, gynecologist Biral Mullick claimed to have done 10,000 QS procedures; he trained hundreds of rural practitioners and set up the Indian Rural Medical Association (IRMA) that claims a membership of 40,000. The rural practitioners have a smattering knowledge of allopathic drugs and combine it with traditional medicine and homeopathy.
"The doctors are my friends and I only teach them the technical know-how and provide them with pellets," admitted Kessel when he was in Kolkata in 1998 to convince doctors to appeal to the Indian government to rescind the ban. “I do not do anything illegal, I do not do trials in your country.”
What drives Kessel, founder of the International Federation for Family Health, and Mumford, director of the US-based Center for Research on Population and Security (CRPS), is their life-long devotion to fighting population growth in developing countries and increased immigration to developed countries. They promote QS as the answer to maternal deaths in poor countries while simultaneously promoting the need for sterilization by playing on upper-class fears of the “population problem.”
"The explosion of numbers will come from the immigrants and their offspring and will dominate our lives. There will be chaos and anarchy. It's even more serious than the nuclear threat," said Kessel. “The threat of immigrants invading and taking over is real, they are swarming all over and draining the resources. Look at the chaos in India’s eastern region with thousands coming in from Bangladesh and in the USA, Mexicans and Caribbeans are pouring in. No civilized government can allow this.”
By exploiting fear of the “population explosion,” Mumford and Kessel shift attention away from pressing issues of hunger, unemployment and rising costs of health care and education, according to economist Navsharan Singh, who co-authored the West Bengal study. Like national governments and the international population lobby, the duo do not take into account the impoverished lifestyles and gender inequality that rob most women of their choice on issues of marriage or repeated pregnancies.
The West Bengal study, for the first time, documented the actual experiences of women who have undergone QS. Apart from the health impact, it probes deeply the socio-economic context in which women are choosing to be sterilized and the issue of easy availability of QS from private medical practitioners in the context of deteriorating public health services. Rural medical practitioners who provide QS were interviewed to understand their informal networks and to provide a contrast to the information given by the women.
A major factor that influenced women's decision-making was that the rural medical practitioners who provide QS are locals and trusted members of the community. Moreover, they have a personal relationship with the women and their families since over the years they have treated them for various ailments. As one woman sterilized with quinacrine put it, "He (the provider) guaranteed that there would be no side-effects. And his medicines really work. He has treated me many times; I have faith in him." In contrast, surgical sterilizations are done in impersonal camps by unknown doctors with hundreds of women sterilized on one day with makeshift facilities and little counseling.
In the absence of adequate public health services, particularly in rural areas, the easy availability and accessibility of these providers make the community dependent on them. The IRMA of unregistered ‘doctors’ also provide essential services like abortion and thus endear themselves to women. In such a scenario, women who are desperate for birth control need little convincing to try QS after hearing positive things about these ‘doctors’ from relatives or neighbors who have undergone the procedure.
According to women's rights activist Laxmi Murthy, "The non-governmental organizations (NGOs) like IRMA providing QS tend to be better-behaved and have better services than the government-run clinics. So when NGOs use these banned procedures, people unfortunately tend to trust them more than the government, which they are more suspicious of. Since government services are almost non-existent especially in villages, NGOs fill the gap and are welcomed."
The use of banned drugs and procedures in India is possible because of weak regulations and lack of monitoring and enforcement. Two years ago, members of IRMA conducted trials on 700 women in Bengal by inserting crushed erythromycin tablets through an intra-uterine device to sterilize them. Last year, doctors experimented with chord blood on HIV/AIDS patients without their consent or following research protocols. "It's the lure of fame, foreign travel and the glamour of seminars that encourage doctors to pursue these so-called trials," said gynecologist Mukherjee.
Health and women's rights networks have used various opportunities to raise awareness about the campaign against quinacrine sterilization in India. They have suggested to the state drug controller that medical professional bodies should be informed repeatedly and warned against its use. Following the public hue and cry, the rampant use of QS seems to have weakened among qualified doctors in the cities.
However, some doctors have appealed to the Drug Controller of India to rescind the QS ban. Last year Dr. Sarin filed a legal petition in the Punjab High Court to lift the ban on quinacrine. For the last six years, said Mumford, Dr. Kessel and he have “personally” talked to perhaps 20,000 American clinicians about QS, including physicians, nurse practitioners and nurse midwives. Since without FDA approval, there is little chance of QS being approved by any governments, least of all India, the International Federation for Family Health and CRPS have encouraged FDA-approved trials initiated by Dr Jack Lippes in the U.S. “We are now preparing to apply to the FDA for approval to undertake a much larger national trial,” said Mumford.
If so, the struggle against QS is far from over. In India, the QS ban, the study to document the experiences of QS women, and the coalition of health activists and academics are a step forward in the campaign. However, while women continue to be sterilized with quinacrine, thousands of QS women are left without health follow-up, medical practitioners conducting the unapproved trials go scot-free and governments remain indifferent.
With the unholy alliance of right wing groups keen to stop the ‘invasion’ of third world immigrants and a group of dubious medical practitioners quick-fixing medical ethics, only a sustained campaign with a stronger and wider network of international solidarity backed by more feminist research can highlight how quinacrine sterilization exploits and harms women. The stakes are high not only for women’s health, but for the ethical practice of medicine. QS threatens to be another infamous chapter in an ongoing saga of unethical medical experimentation on human beings.
Rajashri Dasgupta is a journalist with a special interest in issues relating to gender, health, development and politics. She is active in the women’s and peace movements.
Mulay, Shree; Singh, Navsharan; Dasgupta, Rajashri (2003) “Quinacrine Non-Surgical Sterilisation In West Bengal: What We Have Learned From The Women On The Ground,” A report presented in a workshop to discuss the research findings, Kolkata, India, November 28.
The interviews quoted in the text were conducted by the author either on phone or through email. Interview with Elton Kessel was conducted personally in November 1998 when he was in Kolkata to attend a medical conference. In March 2005 Dr Mumford replied to the set of questions I sent to April Mayberry referred to by Dr. A. Sarin. He said she was out of the office traveling.
DifferenTakes is an investigative series of issue papers, published by thePopulation and Development Program at Hampshire College, providing alternative information and analysis on a wide range of reproductive rights, population, environment and social justice issues. This spring we are launching a special series of DifferenTakes focusing on 'Reviving Reproductive Safety' in movements for women's health and reproductive justice.
We are pleased to send you the fourth issue in the series, "Egg Donation for IVF and Stem Cell Research: Time to Weigh the Risks to Women's Health" by Judy Norsigian, co-author of Our Bodies, Ourselves and co-founder of the Boston Women's Health Book Collective. This issue critically examines the process by which women donate their eggs both for IVF (in-vitro fertilization) and stem cell research purposes, and its implications for women's health.
- Betsy Hartmann and Amy Oliver Co-editors, DifferenTakes
Also available in pdf format ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Egg Donation for IVF and Stem Cell Research: Time to Weigh the Risks to Women’s Health
By Judy Norsigian A Publication of the Population and Development Program at Hampshire College • No. 33 • Spring 2005
Last year, Barbara Seaman’s article, “Is This Any Way to Have a Baby?” in O (Oprah) Magazine (February 2004) caused quite a stir among infertility experts as well as women dealing with infertility. It explored women’s experiences with fertility drugs and underscored the paucity of long term safety data as well as the serious, occasionally irreversible problems experienced by some women using these drugs. In response, members of the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technology (SART) posted an unusual rebuttal at the ASRM website, and the controversies continue.
Because there is now significant debate about embryo stem cell research, and because one type of embryo stem cell research (“somatic cell nuclear transfer” or SCNT) requires women volunteers to undergo egg extraction to produce eggs for research purposes, there is renewed attention to the larger question of risks to women’s health from egg extraction procedures. These procedures are the same whether performed for reproductive purposes — as is the case in an infertility clinic where women undergo “in vitro fertilization” (IVF) procedures — or performed for research purposes, as is now being proposed in a number of states pursuing embryo cloning as part of a larger plan to expand stem cell research.
What are the risks of multiple egg extraction? The drug most often used to shut down a woman’s ovaries (before stimulating them with other drugs to produce multiple follicles) is Lupron™ (leuprolide acetate), which has caused a range of problems reported to the Food and Drug Administration (FDA), including rash, vasodilation (dilation of blood vessels causing a “hot flash”), paresthesia (sensation of burning), tingling, pruritis (itching), headache and migraine, dizziness, urticaria (hives), alopecia (hair loss), arthralgia (severe joint pain, not inflammatory in character), dyspnea (difficulty breathing), chest pain, nausea, depression, emotional instability, loss of libido (sex drive), amblyopia (dimness of vision), syncope (fainting), asthenia (weakness), asthenia gravis hypophyseogenea (severe weakness due to loss of pituitary function), amnesia (disturbance in memory), hypertension (high arterial blood pressure), tachycardia (rapid beating of the heart), muscular pain, bone pain, nausea/vomiting, asthma, abdominal pain, insomnia, swelling of hands, general edema, chronic enlargement of the thyroid, liver function abnormality, vision abnormality, anxiety, myasthenia (muscle weakness), and vertigo. Although approved for several specific uses, 1 Lupron is NOT approved for use in procedures for multiple egg extraction — something not well understood by many women. (It is legal to use a drug for a non-approved use, as long as it is on the market for at least one approved use, and Lupron is just one of many drugs used “off-label” in this fashion. But proper studies justifying this use for egg extraction have never been formally submitted to the FDA).
The drugs used to “hyperstimulate” the ovaries also have negative effects, most notably a condition called Ovarian Hyperstimulation Syndrome (OHSS). Serious cases of this syndrome involve the development of many cysts and enlargement of the ovaries, along with massive fluid build-up in the body. As noted in an article about OHSS, “the reported prevalence of the severe form of OHSS is small, ranging from .5 to 5%. Nevertheless, as this is an iatrogenic complication of a non-vital treatment with a potentially fatal outcome, the syndrome remains a serious problem for specialists dealing with infertility.” 2 Also, as noted by Dr. Suzanne Parisian, a former Chief Medical Officer at the FDA: “OHSS carries an increased risk of clotting disorders, kidney damage, and ovarian twisting. Ovarian stimulation in general has been associated with serious life threatening pulmonary conditions in FDA trials including thromboembolic events, pulmonary embolism, pulmonary infarction, cerebral vascular accident (stroke) and arterial occlusion with loss of a limb and death.” 3
So why is multiple egg extraction the norm in IVF clinics? With such risks involved, why don’t specialists just try to extract the single egg that women normally release each month? If only one egg is “harvested” using so-called “natural” cycling, there is a good possibility that it will not be successfully fertilized, or if fertilized, it may not develop into an embryo that could be successfully implanted into a woman’s uterus, thus requiring repeated surgical procedures to extract more eggs. Extracting multiple eggs obviously increases the likelihood of success with each IVF procedure.
The same reasoning can be applied to the research context, as it would be better to have more eggs with which to conduct research rather than fewer eggs. But given the early stages of embryo stem cell research, with only very hypothetical benefits at hand, it may be far wiser to protect women from the risks of multiple egg extraction solely for SCNT research purposes and to permit only surgical extraction of the usually single egg produced each month. Others argue that whatever the risks are — known and unknown — a woman should have the choice nonetheless to take these risks, especially if she has a strong personal investment in seeing certain therapies developed, even if they are only a distant promise.
Those who oversee the ethical conduct of research, especially members of Institutional Review Boards (IRBs), are supposed to think carefully about the matter of “risk/benefit” ratio when making decisions about whether to approve a research protocol. Embryo cloning research (SCNT) poses significant challenges in this regard. One IRB for Advanced Cell Technology in Massachusetts did approve a protocol for somatic cell nuclear transfer several years ago and included in the informed consent document the following language: “Severe lung and blood clot events have resulted in death.” 4 They clearly decided that it was ethical to ask women to take such a risk, though others might argue just the opposite.
Reading the stories of young women who agreed to be multiple egg donors for IVF clinics and ended up with tragic consequences should give us all reason to think carefully about whether these risks are justifiable in the research context. Many advocates believe that such risk-taking would not be ethical, partly because true informed consent is not possible in the absence of better data regarding Lupron in particular. 5
One of the more serious issues needing far greater attention is the absence of any good quality long term safety data on the infertility drugs commonly used. There are hundreds if not thousands of anecdotal reports, where complications were NOT short-lived. As noted in a three-part series in the Boston Herald:
“Seven of the women interviewed for this story say they suffered memory loss and bone aches while on Lupron, and that the problems continue years after stopping the drug. Some say seizures and serious vision problems that started while on Lupron also haven’t gone away.
One woman, Linda Abend in southern New Jersey, started a National Lupron Victims Network after her 34-year-old sister was hospitalized with seizures while taking Lupron in 1991 for a benign fibroid. Abend says her sister continues to suffer daily seizures, plus debilitating bone and muscle pain eight years later. And Abend said she has heard from more than 1,000 people nationwide — mostly women — who also report serious side effects that continue after stopping Lupron.
The FDA says it has not tracked claims of such long-term effects.…” 6
In a report submitted by TAP Pharmaceuticals to the FDA in April 1998, researchers wrote that they were “concerned” because more than one-third of the women they studied who took Lupron did not “demonstrate either partial reversibility” or “a trend toward return” of bone mass in the six months after they stopped taking the drug. Further, the researchers noted some women lost as much as 7.3 percent of their bone density during treatment — more than twice the amount the drug’s packaging lists in its warnings. The researchers concluded, “A more complete assessment of the effects of Lupron on (bone density) can only be made with longer term follow-up of these patients.” 7
Some women’s health advocates argue that it is premature to conduct SCNT, especially when it involves multiple egg extraction, because the substantial risks involved are not offset by any clear benefit. In the case of IVF, the best infertility clinics can now offer 30- 40% success rates, so that women undergoing multiple egg extraction — whether to achieve a pregnancy themselves, or to be an egg donor for another woman — do know that there is a clear potential benefit, and one that is of inestimable value: a baby.
The risk/benefit ratio is vastly different in the case of SCNT, where the possible benefits of such research are quite hypothetical at this stage. It is far from clear that SCNT will lead to any viable therapies, and much of what we need to learn in this realm of research can result from studying embryo stem cells derived from “conventional” embryos that would otherwise be discarded by couples who are no longer pursuing IVF at an infertility clinic. (Thousands of such embryos are now available for embryo stem cell research being conducted around the country.) It is conceivable that, over time, when embryo stem cell research has demonstrated that viable therapies are possible, a stronger case can be made for pursuing SCNT. (SCNT theoretically will make it possible to develop therapies that will be immuno-compatible, thus avoiding the problem of tissue rejection, which is more likely to occur with stem cell therapies that have a different genetic make-up.)
Although SCNT does provide an opportunity to study the progression of certain rarer diseases, some of this research can be done with embryos that were rejected during the process of preimplantation genetic diagnosis (PGD). Again, these are embryos that will not be used for reproduction purposes, because problems were detected, and thus would likely be discarded if not used for research.
Some women’s health advocates urge that multiple egg extraction for research cloning purposes not be pursued at this time, and that any eggs for such research be obtained only via “natural cycling” — where a woman would not use fertility drugs but simply have the (typically) one follicle per month that she releases surgically collected. Given that South Korean researchers had to extract 242 eggs from 16 women to create one clonal embryo from which they developed a line of embryo stem cells to study further, there will certainly be pressures to accelerate the collection of eggs through more widespread use of multiple egg extraction procedures. Ads for egg donors are already commonplace on many college campuses, where young women are motivated to undergo egg extraction for much-needed income ($4-7,000 in most cases) as well as for altruistic reasons. Both of these motivations could influence thousands more young women and economically disadvantaged women to undergo risky egg extraction procedures solely for research, and under circumstances where the benefits are far less clear and mostly still hypothetical. This will be another arena where we will see the mantra of “reproductive choice” once again co-opted and falsely applied.
Given that there may be new techniques developed soon that would obviate the need for multiple egg extraction, there is even more justification for a cautious approach. As noted in the New York Times, a technique called “in vitro maturation,” or I.V.M., may make it possible to obtain multiple eggs without using hormone injections. “Doctors have found that a few days before ovulation, as many as 30 to 50 egg follicles have begun to mature. Normally, only one will fully ripen for ovulation, and the rest are lost. But if the eggs are removed before ovulation, many of them can be matured in the laboratory.” 8
The push for SCNT (also called research cloning or “therapeutic” cloning) will be strong in the coming years. Because the most vocal critics of this research are from the anti-abortion community, many prochoice advocates are reluctant to get involved with this debate for fear of lending support to a larger anti-choice agenda. Although there are those who have deliberately confused this issue, sometimes conflating embryo cloning research with ALL embryo stem cell research, it is important to keep the two separate and to insist that health concerns for women don’t take a back seat.
Judy Norsigian is a co-author of Our Bodies, Ourselves and co-founder of the Boston Women’s Health Book Collective, now called Our Bodies Ourselves. She serves as the organization’s Executive Director and is involved with numerous women’s health initiatives nationally and internationally.
Endnotes 1 For example, the treatment of endometriosis and fibroid-associated anemia. 2 Delvigne, Annick and Rozenberg, Serge. “Epidemiology and prevention of ovarian hyperstimulation syndrome (OHSS): a review” Human Reproduction Update, vol. 8, no. 6, 2002, pp 559-577. 3 From Dr. Parisian’s February 2005 memo now posted at www.ourbodiesourselves.org 4 Other language from this document, titled “Consent to Participate in a Study Involving Egg Donation for Stem Cell Research”:
Complications associated with being an egg donor include unpredictable response to the hormones provided to you, surgical complications during the egg collection, and unknown long-term side effects from the hormones. If any of these complications arise the reproductive biologists involved in this research may choose, at their discretion, to terminate your continued participation in this research.
Risks and side effects associated with hormones (gonadotropins, hCG and GnRH agonists). The gonadotropins will be used in order to stimulate your ovaries. Adverse reactions reported in women treated with gonadotropins include ovarian hyperstimulation. This is a condition in which the ovaries continue to enlarge even after the eggs have been collected. In addition to enlarged ovaries, fluid begins to be retained in the abdomen and becomes very difficult to control, resulting in fluid imbalance. Rare, but serious, consequences of this imbalance include lung and circulation problems such as collapse of a lung, acute respiratory distress syndrome, blood clot which may lead to inflammation of the veins, obstruction of blood vessels in the lungs, damage to the lung tissues, stroke, obstruction of an artery resulting in the loss of limb(s); blood in the abdominal cavity; kidney damage; large ovaries; increased heart rate; shortness of breath; rapid breathing; flu-like symptoms of fever, chills, musculoskeletal aches, joint pain, nausea, headache and tiredness; breast tenderness; and skin reactions such as dry skin, blood rash, hair loss and hives. Severe lung and blood clot events have resulted in death.
The following adverse reactions have been reported in patients receiving human chorionic gonadotropin therapy: headache, irritability, restlessness, depression, fatigue, edema, and pain at the injection site.
Adverse reactions regarding GnRH agonists include anemia; changes in various heart problems; high blood pressure; fluid accumulation in the limbs; formation of blood clots which potentially could be dislodged from the involved vein or artery causing damage to vital organs such as lungs, heart or brain; intestinal problems such as decreased appetite, constipation; nausea and vomiting, diarrhea, difficulty in swallowing; intestinal bleeding, intestinal ulcers and polyps; thyroid enlargement; breast tenderness; hot flashes; bone, muscle and joint pain; anxiety; depression; blurred vision; mood swings; nervousness; numbness; taste changes; memory problems; lightheadedness; blackouts; and headaches. 5 See “Risks to women in embryo cloning,” op ed by Judy Norsigian, February 25, 2005, Boston Globe. 6 Lazar, Kay “Wonder drug for men alleged to cause harm in women,” Boston Herald, August 22, 23, 24, 1999. 7 Ibid. 8 Duenwald, Mary “After 25 Years, New Ideas in the Prenatal Test Tube,” New York Times, July 15, 2003.