By Annie Ye Ren

 

For the past four years, I have periodically worked with a Chinese grassroots HIV/AIDS
non-governmental organization (NGO) that serves children in Fuyang Prefecture,
Anhui Province. The Fuyang AIDS Orphan
Salvation Association (AOS) gives aid directly to local communities, addressing
local needs that are often overlooked or underfunded by large-scale government
projects.

After the Severe Acute Respiratory Syndrome
(SARS) epidemic in 2003, China’s leadership began to develop
programs to provide care for people with HIV/AIDS, beginning with the Four
Frees and One Care Policy and the China Comprehensive AIDS Response (China
CARES). Among other things, this has included free pediatric HIV/AIDS
medicines for a small number of children, and the training of local doctors
on the treatment of children with HIV/AIDS.

 

These changes have been slow to take hold, however, and patients and families still
pay out-of-pocket for treatment for opportunistic infections and related
clinical tests. Many more suffer in silence, and because they live in isolation
are unaware of the new treatment policies. The growth of NGOs like AOS serves
as a reminder of the needs that remain unmet.

 

While some farmers in Fuyang Prefecture have the financial capacity to manage their own
economic and healthcare costs, most farmers with HIV/AIDS need support. For
example, children with HIV/AIDS need to take their medicines at set times of
day. If patients do not maintain strict adherence, the medicines lose their
effectiveness. A recent
report on the Chinese National Pediatric Therapy detailed the problem of
treatment adherence and the resulting growing resistance of patients to first-line
antiretroviral (ARV) drugs.

 

However, many children live at home with aging grandparents who are unable to follow
this strict schedule, while their migrant laborer parents work far away. Some farmers
in Fuyang, especially women and the elderly, are illiterate, and find it
difficult to navigate the complexities of a pediatric HIV/AIDS treatment regimen.

 

With the help of a Boston-based NGO, PATS Kids,
AOS started a health worker project to provide assistance with treatment to
children with HIV in Fuyang. The health workers project was loosely modeled
after Mao Zedong’s “Barefoot Doctors.”
In the Mao era, the “barefoot doctors” were farmers trained in basic
preventative medicine. The program was founded on the principle that basic health
care does not have to be costly and can be provided by drawing on the resources
of the local communities. Following this model, some of the AOS office staff were
trained as “barefoot doctors” with a limited scope of care: their mission was
to ensure the treatment adherence of children living with HIV/AIDS.

 

The assistance of AOS healthcare workers was especially important in impoverished
mountain regions, where local village hospitals are underfunded, and local
doctors inexperienced and untrained in the treatment of HIV/AIDS. I remember
visiting a small cluster of HIV/AIDS-affected families in a mountainous region
in Henan Province with an AOS healthcare worker. While families there received free
HIV/AIDS medicines and care, a trip to the local doctor took two days, and was not
an affordable expense. Additionally, inexperienced local doctors often failed
to prescribe the proper combination of medicines, resulting in unnecessary
physical pain and discomfort for their patients. As a result, some of the
people living with HIV/AIDS that I visited suffered from bloating, weight loss,
and skin infections. All of these symptoms can often be alleviated with
targeted personalized medical regimens, and regular medical exams. 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 reliable source of information from outside
the villages. Isolated rural families do not have access to information
regarding treatment. They also lack psychological and social support. A father living
with HIV once told me, “I don’t care about my own health, I just care about my
child’s. I don’t understand all of these medical issues. I just want to know
that my child will live a long and healthy life. I will do anything to help him
to be healthy.” To an 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

 

These healthcare workers served also as coordinators, relaying messages between local doctors
and the Center for Disease Control. They helped to locate HIV/AIDS training for
local doctors, and provided families with travel stipends to visit the hospital.

 

In addition, AOS healthcare workers often connected isolated families and individuals living
with HIV/AIDS with one another. I remember visiting young newlyweds who had
been introduced to one another by an AOS 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 makeup again for the first time. I look forward to getting
up every day and seeing him.”

 

Grassroots organizations like AOS can alleviate and address specific needs of local
communities. Farmers with HIV/AIDS in China live with heavy medical debt and
the constant strain of illness. Their children, who are often stigmatized at
school, live in constant stress and fear that their parents will soon pass
away. These are not problems with simple solutions, and while grassroots NGOs
are not the only solution, they work to bridge gaps where services simply do
not exist.

 

Annie Ye Ren is a graduate intern with Asia
Catalyst, and has worked over the past several years on international projects
focusing on HIV/AIDS.

 

For more information on children living with HIV/AIDS
in China, see Asia Catalyst’s 2009 report, “‘I Will Fight to My
Last Breath’: Barriers to AIDS Treatment for Children in China”.