THE HOME OF CARING AND LOVE: HIV and Heroin in Southwest China

By Ben Powers

Author's Note: While the information in this article accurately conveys the research conducted, names and identifying characteristics have been changed to protect patient confidentiality.

Early in the morning on a hot summer day in Liangshan Prefecture, patients walk down a dusty alley to a small, converted garage. A simple sign above the metal door reads 'The Home of Caring and Love' (guanai zhi jia). Inside, walls are plastered with posters of condoms in all shapes, sizes and colors to alert readers of the benefits of safe sex. Pop music radiates from the registration counter. Patients drawn by the new wooden couches browse the newspaper and enjoy a complimentary cup of tea. Yet subtle waves seem to suffice as the only form of doctor-patient communication as most patients rush in and out of the clinic. Naively, on my first morning in the clinic I asked why patients were so quick to leave. Stupefied by my question, the doctor exclaimed, "They are very busy now! The clinic may have amenities but the patients are finally living normal lives. Why waste time here?"

When the Home of Caring and Love opened in March 2004, it was one of the first methadone maintenance programs in China. Initially around 50 injection drug users (IDUs) were enrolled in the program. By July 2005 over 150 patients were receiving treatment, many infected with HIV. Although nascent outreach programs targeting populations at high-risk for HIV infection and transmission have achieved some success, there exists a great need to scale up resources to prevent and treat HIV/AIDS and address the suffering of people living with HIV/AIDS in China. The story of Gao Lin, a patient at the Home of Caring and Love, helps reveal the accretions of suffering faced by a woman with HIV living in poverty.

Poverty and Marginalization: Gao Lin

For Gao Lin, her troubles began when her mother was diagnosed with rheumatoid arthritis. Prior to the onset of arthritis, Gao Lin's mother sold garments as a street vender to earn money for her family and was the primary caregiver for her two daughters. As her joints deteriorated, appeals to work fewer hours and requests for assistance with household responsibilities were not taken well by her husband. Gao Lin's father became skeptical about the severity of his wife's illness and often doubted the existence of her pain. When Gao Lin was 13 her parents divorced. This turn of events left her mother with the burden of caring for her daughters and financially fending for her family. Although her mother endured severe physical pain, she continued selling merchandise to provide for her children. Living in poverty and without health insurance, it became economically untenable for Gao Lin's mother to obtain relief for the pain in her joints. Gao Lin despised her father during this time since he was unwilling to support her mother financially. The poverty faced by Gao Lin's family deeply impacted her and had significant consequences for her future.

When Gao Lin was 16 years old she quit school to help her mother sell garments. Desperately searching for a way to improve her family's situation, Gao Lin met an older man who promised her a better life. This man had a good work-unit (danwei) and ample income but after they moved in together he was unwilling to assist her financially or emotionally. "He didn't share anything with me. He didn't give me any money, not even one penny. I was completely dependent on myself." It was during this time that her boyfriend introduced her to narcotic drugs (dupin). He had begun using drugs (xidu) because he disliked his job and wished to escape life's hardships. Although Gao Lin frequently contemplated leaving her boyfriend, she felt compelled to stay with him in the hopes of finally receiving financial support. She continued to sell merchandise on the street and shared her extra earnings with her mother, whose rheumatoid arthritis had worsened. Gao Lin felt crippled by material and emotional burdens. Along with her boyfriend, she too began using drugs to relieve her suffering. This decision eased the tumultuous state of their relationship and they soon decided to marry. The emotional abuse that Gao Lin had endured while dating her boyfriend returned and intensified. Their relationship disintegrated, and after one year of marriage they divorced, leaving Gao Lin in a precarious situation. Gao Lin frequently went hungry in order to use her meager income to assist her mother. She then met a man who was an injection drug user (jingmai xiduzhe) and who was willing to provide Gao Lin with greater material security and alleviate her feelings of desolation. Like many other women at the methadone maintenance program, Gao Lin initially tried to resist injection drug use but her economic needs left her in an uncompromising position. To ease the pain of destitution and divorce, she began injecting heroin with him, only to find herself becoming more apathetic and depressed. Further compounding her suffering was the physical abuse she endured. "We often fought. He would hit me and then we would separate for a while. After a few days he would apologize and tell me he loved me. Then we would get back together. This went on throughout our relationship," she recalled.

Shortly after her introduction to heroin, Gao Lin stopped selling clothes. Without a job, without money, and living with an addiction to heroin, Gao Lin's earlier willingness to assist her mother waned and she instead turned to her mother for financial help. Although Gao Lin's addiction broke her mother's heart, she was willing to take the little money her mother had and use it to buy heroin. "My mother loved me and didn't want to see her daughter in pain, so she gave me money to buy food. But I just used her money to buy more heroin. I was completely addicted," Gao Lin recalls. After using heroin for one year, Gao Lin's mother told her ex-husband about their daughter's illicit drug use. He scolded Gao Lin and demanded that she go to the public safety bureau for drug testing and counseling. After completing a drug rehabilitation course, she returned home but soon began using heroin again with her boyfriend.

A few months later, Gao Lin was informed by the Center for Disease Control and Prevention (CDC) that she had tested positive for HIV. Initially, she did not believe that she was infected with HIV. At the time, rumors regarding the validity of HIV test results fuelled suspicions that the CDC had falsified reports to scare heroin users and prompted her to doubt her HIV status. However, Gao Lin was forced to finally come to terms with her newly infected status. She faced fear, isolation and widespread discrimination (qishi). A doctor from her rural village who discovered that she was infected with HIV refused to care for her; others aware of her HIV status refused to sit next to her or eat with her at restaurants. Without money for health care, access to a drug rehabilitation program, or social and emotional support, Gao Lin continued to feel entangled in a web of dependency and despair.

Heroin, HIV, and Hope

The trajectory of the AIDS epidemic in China has obtained growing attention as HIV infiltrates the 'general population'. Injection drug use is still the primary mode of HIV transmission, and IDUs are highly marginalized and underserved populations in many Chinese communities. Strikingly, HIV prevalence rate among IDUs is over 50 percent in certain areas of west and southwest China ¹. Liangshan, home to the largest population of the Yi ethnic minority in China, is also experiencing a disproportionate burden of HIV infection in the Sichuan Province.

On the heels of the SARS outbreak in early 2003, the Chinese government began to address HIV/AIDS as a national priority. By December 2003, the government formalized its commitment to halt the spread of HIV with the 'Four Frees and One Care' policy (simian yiguanhuai zhengce). The policy provides: 1) free antiretroviral (ARV) drugs to AIDS patients who are rural residents or people with financial difficulties living in urban areas; 2) free voluntary counseling and testing (VCT); 3) free drugs to HIV-infected pregnant women to prevent mother-to-child transmission and free HIV testing of newborn babies; 4) free schooling for children orphaned by AIDS; and, care and economic assistance to households of those living with HIV/AIDS ². By early 2004, a handful of pilot methadone maintenance programs were established to address heroin use in concert with HIV prevention and treatment efforts. Despite these steps, the implementation of user fees at the Home of Caring and Love for methadone treatment remains a barrier for many IDUs seeking help and has particularly affected impoverished Yi minority patients.

Although the Chinese Government has acknowledged the potential for widespread social and economic disturbances caused by HIV/AIDS, the view from the countryside shows that one of the largest obstacles facing China in its efforts to slow the spread of HIV is poverty. Despite differences in transmission route and varying degrees of 'risky behavior', poverty is a common factor underlying the spread of HIV in southwest China. In Liangshan, over one million people - about one-quarter of the population - struggles in poverty and the average daily income for a farmer is well under US $1 ³. China accounts for approximately 18 percent of the world's poor who live 'mostly in rural areas of the lagging inland provinces.' ⁴ As the meteoric rise of China's economy inspires awe and acclaim, over half of the population still lives on less than $2 per day ⁵. The social itinerary of HIV/AIDS has become well-known, often making frequent and prolonged stops among the poor and socially vulnerable who, like Gao Lin, are driven to engage in activities and dependent relationships that increase their risk of infection ⁶. The multiple dimensions of poverty in China have contributed to the dramatic rise in 'high-risk' behavior over the past two decades, particularly injection drug use. Not surprisingly, the impoverished southwest is experiencing one of the most severe AIDS epidemics in China.

Conclusion

After a publicity campaign in Liangshan, Gao Lin discovered the services offered by the Home of Caring and Love and enrolled in the methadone maintenance program. Gao Lin completed the clinical requirements and soon began treatment for her heroin addiction. She now volunteers as an HIV/AIDS peer educator (tongban) teaching IDUs about HIV and providing information about the services offered by the Center for Disease Control and Prevention. With the scaling-up of access to antiretroviral therapy for those who qualify under the national 'Four Frees and One Care' policy, Gao Lin was finally offered the opportunity to begin taking antiretroviral treatment (kangbingdu zhiliao). Although her doctors and I vigorously pleaded with her to begin treatment immediately, she initially decided that living the rest of her life without drugs would be better than having her newfound freedom from heroin addiction effaced by the potential side effects of ARV treatment. After a few conversations with Gao Lin, it emerged that rumors regarding the efficacy and safety of ARV drugs fuelled fear and skepticism among potential ARV patients and contributed to Gao Lin's resistance to start treatment. After some reassurance, Gao Lin became convinced that treatment was worthwhile. She is now receiving free ARV treatment and has made impressive progress in her battle with AIDS.

Like many patients at the Home of Caring and Love, the miasma of fear and discrimination generated by Gao Lin's HIV status remains a significant part of her daily life. She remains disturbed by memories of abusive relationships and also worried about her future. "I am sometimes afraid. We don't have psychologists in China and there is a lot of discrimination against people infected with HIV. But the doctors here [at the methadone maintenance clinic] are very helpful and very understanding. It really is like a family here…But I'm still scared. Actually, sometimes I am very scared."

Gao Lin has been able to reap some benefits of the Chinese Government's reversal in their approach to HIV/AIDS. Fortunately for her, the most important benefit of the change in policy - access to life-saving medications - came at a crucial point. Yet the economic and social constraints placed on Gao Lin from an early point in her life helped structure her risk of HIV infection. The contours of economic insecurity, gender inequality, lack of access to health resources, and the unequal distribution of disease produced an environment where the odds of breaking free - that is, to escape poverty without becoming the victim of drug abuse, violence or infectious disease - were greatly stacked against her. These social conditions structured an inertia of dependence for Gao Lin. Alhough she is now receiving methadone and free ARV treatment, access to a slim range of biomedical services has not eliminated economic constraints or been a panacea for other forms of social and personal suffering.

The complexity of AIDS in China is highlighted by the diversity of the epidemic in a dynamic and changing society. As China continues to undergo social and economic changes, describing individual and social experiences of HIV/AIDS offers an avenue to highlight the struggles and suffering of those living with HIV/AIDS. Individual experiences can demonstrate the forms that large-scale forces - political, economic, social and historical - take in a local context and provide a basis for critically analyzing such forces and the fields in which they occur. A closer examination of the relationship between poverty and HIV/AIDS will hopefully challenge existing assumptions regarding risky behaviors that fail to critically address the immense role that structural forces play in sculpting one's risk of infection.

BEN POWERS, a first-year medical student at Wayne State University School of Medicine, plans to pursue a career in medical anthropology and infectious diseases. He can be reached for comment and questions at ben.powers@gmail.com.

Footnotes:

1. State Council AIDS Working Committee Office and UN Theme Group on HIV/AIDS. A Joint Assessment of HIV/AIDS Prevention, Treatment and Care in China (2004). http://www.unchina.org/unaids/ekey.html .

2. Ibid.

3. Liangshan Yizu Zizhi Zhou Tongji Ju "Liangshan Zhou Tongji Nianjian: 2004" Liangshan Autonomous Prefecture Statistical Department. Liangshan Prefecture Statistical Yearbook: 2004.

4. World Bank China CAS-Country Assistance Strategy: January 22, 2003.

5. Blakey et al. "The global distribution of risk factors by poverty level." Bulletin of the World Health Organization, February 2005, 83 (2).

6. UN Millennium Project Task Force on HIV/AIDS, Malaria, TB, and Access to Essential Medicines Working Group on HIV/AIDS 2005. Combating AIDS in the Developing World. Earthscan: London, 2005.

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