After the Severe Acute Respiratory Syndrome (SARS) epidemic in 2003, small incremental changes –as part of the government’s Four Free's and One Care Policy and China Comprehensive AIDS Response(China CARES)—, beginning with free pediatric HIV/AIDS medicines for children and the training of local doctors on the treatment of children with HIV/AIDS, revealed that the Chinese leadership was working on re-developing its welfare and healthcare system. The changes were slow however, and while HIV/AIDS treatment was free, patients and families had to pay out-of-pocket for opportunistic infections and related clinical tests. Many suffered in silence and lived in isolation, unaware of the new policies; the ballooning in size of NGO’s like AOS served as a reminder of the needs that remain unmet.
While some farmers in Fuyang prefecture had the financial capacity to manage their own economic and healthcare costs, farmers with HIV/AIDS needed additional financial and medical support. For example, children with HIV/AIDS need to take their medicines on time in order to ensure adherence. However, many children are left at home with aging grandparents and parents that are migrant workers. Some farmers in Fuyang, especially women and the elderly, are still illiterate and find it difficult to navigate the complexities of a pediatric HIV/AIDS medicine regimen.
The treatment of children with HIV/AIDS can be quite complex. Without proper adherence, the medicines lose their effectiveness, leading to the failure of the available drugs. A recent report on the Chinese National Pediatric Therapy detailed the problem of medicine adherence and the systematic failure of the first line drugs. The AOS NGO (with the help of a Boston based NGO PATS Kids) started the health workers project realizing early on that children with HIV in Fuyang needed proper oversight. The health workers project was loosely modeled after Mao Zedong’s “barefoot doctors.” The “barefoot doctors” from the Collective Period of China’s modern history were farmers trained in basic preventative medicine. Founded on the principle that health care does not have to be costly, and by using the resources of the local communities, basic public health can be implemented. Following this model, some of the AOS office staff were trained as health workers or “barefoot doctors” with a limited scope of care, just for ensuring the medicine adherence of children infected by HIV/AIDS.
The work of AOS healthcare workers was especially important in impoverished mountainous regions, where local village hospitals are underfunded and local doctors inexperienced and untrained in the treatment of HIV/AIDS patients. I remember visiting a small cluster of HIV/AIDS affected families in a mountainous region in Henan Province with the AOS healthcare worker. While families there were given free HIV/AIDS medicines and care, a trip to the local doctor takes two days, and is not an affordable expense. Additionally, inexperienced local doctors often fail to prescribe the proper combination of medicines leading to unnecessary physical pain and discomfort for their patients. Some of the HIV/AIDS individuals that I visited suffered from excess bloating, weight loss, and skin infections, which can often be alleviated with targeted personalized medical regimens, and steady, repeated exams with the doctor. The AOS healthcare workers documented these problems, tracked and monitored the basic health of the children they visited and worked to address medical issues that came up.
AOS healthcare workers also served as a steady source of information from outside the villages. Isolated families do not have access to information regarding treatment, mental support, and social support. I remember a father with HIV once said to me, “I don’t care about my own health, I just care about my child’s. I just don’t understand all of these medical issues, these medicines. I just want to know that my child will live a long and healthy life. I will do anything for him to be healthy.” To a small isolated family like this one, a visiting health care worker brings much needed relief from the daily anxieties and fear of living with HIV/AIDS
The healthcare workers served also as coordinators, relaying messages between the local doctors, and the center for disease control. Additionally, they helped to locate HIV/AIDS training for local doctors, and provided families with travel stipends. Outside of addressing medical problems, AOS healthcare workers often connected isolated families and individuals living with HIV/AIDS with one another. I remember visiting young newlyweds set up by an AOS worker. The couple met through introductions made by the healthcare worker. They fell in love and later moved in together. The young woman said to me, “When I met my husband, I felt the need to put on make up again. I look forward to getting up everyday and seeing him…”
Grassroots organizations like AOS function to alleviate and address specific needs that might be prominent in certain communities and not others. Today, farmers with HIV/AIDS in China continue to live with medical debt and physical degeneration. Their children, often discriminated in school, live in constant stress and fear that their parents will soon pass away. These are not problems with simple solutions, and while grassroots NGO’s are not the only solution, they work to bridge gaps where services simply do not exist.
Posted on July 22, 2010
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