Junsuda Suwanchandee

Junsuda Suwanchandee has passed away.

By working with Thai women, hospitals and policymakers to reframe the way in which HIV-positive women encounter their first crisis with the disease—discovery of their infection—Junsuda is helps women attain the information, resources, and support necessary to begin to effectively handle their future life with the virus.

For most women with HIV/AIDS in Thailand, learning of their positive status comes as a devastating shock after receiving routine blood tests at the beginning of a pregnancy. With the hospitals where these women are told of their infection offering little in the way of information or support at this critical time, positive women find themselves ill-equipped to make informed decisions about their health, their pregnancies, and their lives -- decisions which, if poorly made or made by others, can have devastating or irreversible consequences. Junsuda is changing the way positive women weather this initial storm, with special regard to their reproductive needs, an issue which receives scant attention from other HIV/AIDS programs. By working in hospitals and through her organization, Power of Life, Junsuda is creating effective practices, procedures, and institutional channels by which positive women can learn about their choices and rights, make their needs known, and access the necessary resources to address them. Additionally, Power of Life is partnering with academics, the medical community, and women's, human rights, and AIDS groups to raise the visibility of these women at the policy level. By empowering women to take control of their lives with the illness at the outset, Junsuda is helping them to both expanded their choices and they the necessary foundation for them to access the wider range of problems associated with living with HIV/AIDS.

According to 2002 UNAIDS statistics, there are approximately 300,000 women infected with HIV/AIDS in Thailand. For the majority of Thai women, who acquire the virus through consensual sex with boyfriends, husbands, and partners, discovery of their positive status only occurs when they seek medical care for a pregnancy. At this important time, positive women often receive little information beyond simply learning they have HIV; they do not consistently receive comprehensive information about the virus or their options for medical treatment, knowledge of their economic, social, and medical rights, or referrals to other resources that can assist them or provide them this information. Without the sufficient understanding of their choices that could lead to well-informed decisions, positive women act on the basis of fear or misinformation: a woman may quit her job thinking she will die immediately, leading to a financial crisis; or she could permanently pull her children out of school for fear of their abuse at the hands of others. Often, however, positive women are given no choices at all. Inconsistent or poorly enforced hospital policies, such as failing to acquire informed consent, leave women feeling coerced into taking certain medications or participating in clinical trial because they don't see themselves in a position to question their doctors.

This lack of power and information to make decisions is particularly acute in relation to reproductive rights and health. Although no official statistics exist, HIV-positive women report being left out of the most basic decision -- whether or not to continue their pregnancy -- with doctors or partners deciding whether or not a woman should deliver her child. Positive women also receive little information about birth control, sometimes being forcibly sterilized or provided information about only one contraceptive option.

Because hospitals are the entry point -- and the point of disorientation -- for many HIV-positive, Junsuda is working in three Bangkok hospitals to develop and demonstrate both the viability and impact of creating a new framework to educate and support HIV-positive women. Power of Life trains peer counselors to provide information prior to blood tests given to pregnant women, to minimize the shock for those with the virus and to provide basic information on AIDS and other sexually transmitted diseases to all. These counselors also immediately begin working with women whose tests come back positive, dispelling common myths and stereotypes about those living with HIV. Because the mental health units of most hospitals are not equipped to handle the specific needs of AIDS patients -- and because women are less receptive to counseling or support from men or those not living with the virus -- Junsuda and her staff organized the first hospital-based peer groups for these women, to counter the overwhelming sense of isolation and hopelessness felt by many of them. Through a partnership with CARE International/The Ruk Thai Foundation, Junsuda begun spreading this model, training positive women in the central, eastern, and southern regions of Thailand to initiate their own groups, with over 40 groups already established.

These peer groups additionally serve as a grass-roots input by which Junsuda can work with medical professionals to implement policies and procedures that are frequently violated (such as informed consent) and improve them to better reflect the experience of positive women. For example, peer group discussions surrounding the difficulty of informing partners and family members of a woman's positive status led to the suggestion that doctors or nurses help with this important task, using the respect garnered by these experts to support women while in this delicate situation.

Aware that hospitals cannot address all the immediate and long-term needs of HIV-positive women, Junsuda has positioned Power of Life to serves as a resource organization for this group. Power of Life operates both a 24-hour hotline and a Web site (utilized by 50 and 2000 people per week, respectively) to provide additional information and referrals to speak to needs not directly met through hospital-based counseling, ranging from financial crises to family relations: Junsuda can direct women to temporary emergency homes if they are abandoned by their families, and helps them contact organizations with expertise in labor law and AIDS-related discrimination if they lose their jobs. Power of Life also creates manuals providing advice and techniques on important matters including how to inform family and friends to how to negotiate with partners over contraception.

Since very little research has been completed in Thailand about the needs of HIV-positive women or the violation of their rights, Power of Life conducts studies and surveys on topics of concern to them, such as reproductive health. In keeping with her philosophy that positive women must be involved in decisions affecting them, Power of Life trains positive women to partner with academics in both designing the studies and conducting the research. Participation by positive women not only increases the self-confidence among the researchers, but also makes them more accurate, as HIV-positive women are more likely to speak freely to each other than they are to an unknown questioner.

Using this research as a baseline document for policy change, Junsuda has begun partnering with a broader coalition of organizations to promote national and international level policy change and to ensure the institutionalization of these policies at the local level. Power of Life works domestically with Thailand's NGO Coalition on AIDS, Thailand's first, largest and most influential AIDS network, along with women's organizations and Thailand's National Human Rights Commission. As a key regional leader in the International Community of Women Living with HIV and AIDS (ICW), an international network run for and by HIV positive women, Junsuda also mobilizes international support to affect change within Thailand.

Junsuda was born in 1971 into a well-off family in Bangkok. Feeling isolated while in her teens, Junsuda found companionship in a gang that sold and used drugs, activities which she began engaging in herself. However, after seven months of using heroine, Junsuda decided to change her life, stopped abusing drugs, and found a job. It was during a mandatory medical test for this new position that she first learned she was HIV-positive. Treated as an outcast by hospital staff and given no information about the virus or how to live with it, Junsuda succumbed to stereotypes and misinformation on the uselessness and immediate death of HIV-positive people. Only 17 years old at the time, Junsuda fell into a period of despair, relapsed into her heroin addiction and attempted suicide. Junsuda was then disowned by virtually all of her family, and left without money, a place to live, or any means of support.

Only after many months did Junsuda eventually find and begin attending a support group where she learned more clearly about her illness and gained confidence by educating others about the disease. It was during this time that Junsuda discovered that in addition to discrimination from those without the virus, discrimination -- based on gender and means of contracting HIV -- exists within the AIDS community as well. This realization led her to leave the support group and establish her own organization to promote the equal treatment of all HIV-positive people. In addition to developing a successful project for secondary school students that not only gave them information about HIV/AIDS, but also sensitized them to the reality of those living with the disease, Junsuda began offering counseling to other at-risk groups, such as pregnant women.

Witnessing regularly the devastating consequences that resulted from pregnant women learning of their infection in an information vacuum and struggling in a hostile hospital environment that was meant to help them, Junsuda became more acutely aware of the lack of choices often presented to these women. These limitations became even more tangible when she herself unintentionally became pregnant. Going against strong pressure from her physician to terminate her pregnancy, Junsuda instead decided to raise a family. Trying on her own experiences and that of many women she had counseled, Junsuda reoriented Power of Life to addressing the needs of HIV-positive women.