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Living with HIV/AIDS in China
Of all the challenges Doctors Without Borders/Médecins Sans Frontières (MSF) faces treating HIV/AIDS in China, perhaps none is as daunting as the pervasive stigma surrounding the disease
November 21, 2005
"Before I had AIDS I worked in an office," said 40-year-old D. "When they found out I had the disease, they fired me on the spot. Now I face difficulties from family, friends, and society."
D.'s story is one of many and typical for those living with HIV/AIDS in China today. But he has found some hope, and some help, free of prejudice and fear. Since December 1, 2003, Doctors Without Borders/Médecins Sans Frontières (MSF) has operated an HIV/AIDS clinic in the southern Chinese city of Nanning, the capital of Guangxi Autonomous Region. Offering basic health care, medical consultations, psychological support, and antiretroviral (ARV) therapy, the clinic is one of the few in the region where HIV-positive people like D. can receive care and treatment. It is also the only place they can receive the entire treatment package, from testing and life-extending ARV medications to drugs for opportunistic infections, for free.
Discrimination and a lack of understanding of the disease are still the reality in the region. These societal problems affect people living with HIV/AIDS in many ways, creating huge difficulties for those infected. Fear of stigmatization and isolation is one of the first obstacles people must overcome to obtain proper diagnosis and treatment.
"Many people in China think if they have this kind of disease, it's a very bad thing," said Qin Yusong, 42, the MSF clinic's administrator and lifelong resident of Guangxi. "The residents of Nanning don't want to come to our clinic. They are afraid of having their friends and their relatives find out that they have this disease."
The result of this reluctance to know their HIV status is to postpone testing for the disease often until its advanced stages when their immune systems may already be severely comprised. At this point they are very vulnerable to many opportunistic infections.
"It's frustrating to see that some people come too late to our clinic, and there's not so much we can do to help them," said Stefano Manfredi, 35, coordinator for the project in Nanning, and head of the clinic. "In fact it is the main cause of death in our clinic."
The longer people wait for treatment, the more likely they will fall victim to diseases like the two most common opportunistic infections in the region, tuberculosis (TB) and penicilliosis — a rare disease that causes skin irritations in healthy people, but can be fatal to people living with HIV. Treating these diseases in concert with a patient's HIV poses a serious challenge for the MSF doctors and nurses. For example, a patient taking medications to treat both HIV and TB may be forced to take up to thirty pills a day. Such a heavy pill burden can affect a patient's ability–and willingness–to fight the diseases.
Unfortunately for patients like Deng, the causes of the initial fears–being ostracized by friends and family–can become realities after they have been properly diagnosed. Such a rejection from their community can have devastating results.
Discrimination in Unexpected Places
The stigma attached to HIV status affects many aspects of victims' lives, and for these people with compromised immune systems, perhaps the worst form of discrimination comes from the Chinese medical community itself.
"Besides family members, work colleagues, and friends, in the hospitals, the nurses and doctors still have strong feeling against the HIV patients," said MSF nurse Chen Xuelian, 27. "Some HIV-positive patients will go to local hospitals to get some tests, and the doctors will refuse to treat them."
The problem within the medical community is pervasive. For the staff at the MSF clinic this means constantly trying to find medical professionals who understand the nature of disease, and who are willing to treat their patients when they refer them to area hospitals.
"If we want to run some tests, like biopsies, and they know our patient has HIV, usually the doctors will refuse to do it for us," said Dr. Lu Guo Gang, 32, one of the staff doctors at the MSF clinic. "Each time we have to contact a young doctor in People's Hospital Number Four to help us with this kind of test. He's the only guy. Every time we need a small surgery, we have to ask him."
With a reported HIV-infection rate below 0.1 percent of the population, Chinese doctors may feel they have some excuse for their lack of focus on the disease. But in a country with such a large population this translates into at least 840,000 people living with HIV/AIDS in China today. And by some estimates, the number could reach as high as 10 million by 2010 , if efforts are not made to curb the disease's spread. Quickly educating the medical community on the proper care of HIV patients is a critical place to start.
"There are not enough experienced doctors and not enough training for them," said Dr. Tang Zhirong at the Chinese Center for Disease Control (CDC) in Nanning. His team is responsible for HIV/AIDS treatment for the entire Guangxi Autonomous Region, home to the third-largest HIV-positive population in China.
Dr. Tang is an expert on HIV/AIDS whose government agency runs the Nanning HIV clinic in conjunction with the MSF team. He has been involved with a recent push to educate more local doctors about HIV/AIDS by bringing them to the CDC and MSF clinic for exposure and training. Dr. Tang already travels to regional hospitals, but hopes to make Nanning a center of HIV education. Over the past few months, the local government has been sending doctors and nurses to the MSF clinic for trainings, but there are still problems.
"Most of these doctors, they themselves are not willing to treat AIDS, said Dr. Lu Guo Gang. "They are appointed by the local health bureau for training."
This reluctance can have far-reaching effects on the fight against AIDS in China."It will be a big problem if they don't treat the patients properly and we wind up with lots of drug resistance," said Dr. Lu.
No one in the MSF program has died after being denied medical care, "because, said Dr. Lu, "we try very hard to find doctors willing to work with us."
Not everyone is so fortunate. X. Lan, 32, discovered she was HIV positive after taking her son to the hospital when he was ill with a cough and a fever. After it was discovered that the boy was infected, the parents also took a test and found they were as well. They were shunned by their family, and had to leave their home.
"We rented a house in another part of town, but the landlords found out that we have the disease and threw us out," Lan said.
The family was forced to move to Nanning where they could lead more anonymous lives. Then her son became sick again. "My son was in hospital and he needed a blood transfusion to replace the white blood cells. The doctor was scared of AIDS patients, and we were told we had to get out of the hospital. My son, Wei Tingfeng, died three days later."
Wei Tingfeng died in November 2003. He was five years old. The MSF clinic, where Lan and her husband now receive free ARV treatment, opened December 1.
Changing Attitudes and Empowering Patients
MSF operates ARV programs in 29 countries around the world, and each one represents a unique context. In many of these programs, the patients have taken it upon themselves to fight the stigma of the disease, and take back some control of their lives. In China, many people thought this to be impossible.
But since 2003, a small group in the southern province of Guangzhou called AIDS Care China has been working to change that. Through a program they call the Red Ribbon Center, people enrolled in the ARV program have begun to discover themselves again, share their experiences, and find strength and solidarity in each other.
In June 2005, the Red Ribbon Center opened in Nanning in a rented office space above the MSF clinic. "The main objective of the center is to provide ARV counseling to all of the CDC clinic's ARV treatment patients," said Xiao Fei, head of the center. "We also provide psychological support for those infected with the disease."
The ARV counseling is focused on adherence issues — how and when to take the drugs, what type of side effects to expect, and how to cope with them. The Red Ribbon Center's 100-plus members are HIV positive and on ARVs, giving them the ability to speak from experience. Counselors all reinforce the important fact that once you start ARV treatment, you have to continue taking the medication every day for the rest of your life.
As the leaders of the center know, this intensive drug regime can cause emotional strains and social problems. They have arranged psychological support for each other, set up a website to answer questions, and given out their mobile phone numbers so that, according to Xiao Fei, the patients can "think of us like friends."
"There is a lot of frustration," said Xiao Fei. "Each patient must take pills, lots of pills for the rest of their lives. We arrange outings to help the patients release and share some of this frustration."
The Red Ribbon Center has also set up a shelter in Nanning to provide a safe, clean place for people from rural areas who come to the clinic for their ARV treatment. Because the members are no strangers to the societal intolerance and discrimination, the shelter doubles as a temporary refuge for people evicted from their homes as a result of their HIV status.
This level of peer support is just one aspect of how the people living with HIV/AIDS in Nanning are taking back control of their lives. Each day they take their drugs at the MSF clinic is another day they have decided they want to survive.
"What is rewarding," said Stefano Manfredi, "is seeing people come to our clinic, and somehow, because they get access to care and treatment, because they can find a place where they can meet people who are having the same kind of problems and issues, and to see that their life changes, and that they find new focus for their lives, and new meaning in the things they can do."