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Diagnosis Without Discrimination
While medical care has improved, more education is needed to end bias and make the battle against AIDS fully effective
By Li Fangfang | NO. 50 DECEMBER 15, 2016

   

A staff from the center for Disease Control in Xingtai, north China's Hebei Province, explains facts about HIV/AIDS to students on December 1 (XINHUA) 

His 27th birthday was a dark milepost in Wang Bing's life. On that day, Wang learned he was HIV positive and he had been infected through unprotected sex.

"It hit me like a ton of bricks," the 31-year-old said. "The doctor didn't even let me use his pen. I felt discriminated against."

The timing of the disclosure couldn't have been worse. His grandmother had just passed away and the family was still mourning the loss. It was not the right time to break the news to them.

"I'm not worse than other people," Wang said passionately. "I didn't want my mother to worry and be hurt."

The local medical center where he had gone for treatment was a bad choice. Wang found the staff lacking in empathy. So he decided to go to Beijing for treatment.

A welcome surprise awaited him at the medical center there. "I was warmly received," Wang said. "They explained the medical process to me and my medication started."

Facts and figures 

Wang is one of the 654,000 people living with HIV/AIDS in China today. This number includes 96,000 new infections reported between January and September. According to the Chinese Center for Disease Control and Prevention, 120 million people were examined in this period. There have been 201,000 deaths since AIDS was first diagnosed in China in the 1980s.

The update indicates three new trends. Sexual transmission accounts for 94.2 percent of the new infections. Of this, 27.5 percent of the infections occurred due to sex amongst homosexuals.

A notable increase was detected in young people aged between 15 and 24 as well as among people aged 60 or more. In the first age group, over 2,300 tested positive. This was a fourfold increase in this group over 2010. There were 13,000 people aged above 60 who accounted for the new cases, 3.6 times the number in 2010.

The good news is that China's domestically developed experimental AIDS drug is undergoing its final review by the China Food and Drug Administration. Once it gets approved, it can be available for treatment. While traditional antiretroviral drugs used in HIV/AIDS treatment are oral and need to be taken daily, the new drug is an injection that can be administered weekly.

Zhao Yan, a treatment specialist at the National Center for AIDS/STD Control and Prevention, said currently, seven or eight oral drugs are provided to patients for free. However, very few patients use the ones distributed by the national healthcare system because "the procedure is complex and could violate their privacy."

HIV/AIDS patients usually go to local disease control and prevention centers or hospitals treating infectious diseases, where they can get free medicine.

In Beijing, there are four designated hospitals for HIV/AIDS treatment. However, not every city provides such service.

"Patients diagnosed as HIV positive in third-tier cities or remote areas usually get discriminated against," said Kong Lingkun, founder of Love Without Borders Foundation, an NGO. "Patients can't get linked to appropriate consultations as soon as possible, not to mention medication."

 

Yin Zuluan, a doctor in Yunnan Province, examines an HIV/AIDS patient in November 2011 (XINHUA) 

Social stigma 

Although a medical solution is in progress, social reactions remain mixed, despite the awareness campaigns in the past two decades.

Cheung Kam Hung, founder of Rainbow China, a non-profit organization registered in Hong Kong, has been living with AIDS for over two decades since being diagnosed in 1995.

He calls AIDS a socio-psychological disease. "You make your [sexual orientation and HIV status] public because of stress. You may lose your family, friends and job. There are lots of fears [about going public]."

"One of my friends was diagnosed as HIV positive," Wang Bing said. "No one helped him with medical information. He suffered the stigma of HIV/AIDS and [then] concealed his disease. [So] he didn't get medical treatment in time and died."

This kind of scenario explains why it is difficult to get a precise idea about the number of HIV/AIDS patients in China. It is estimated that 30 percent of infected people in China are still hiding their health status, which makes treatment and prevention of fresh infections difficult.

Li Yinhe, a well-known sociologist and sexologist, describes the situation and its consequences.

"People with HIV/AIDS are [often] discriminated against in this traditional culture," Li said. "People tend to doubt these patients' private lives." Discrimination against same-sex intercourse means many infected people are not willing to get tested, which increases the risk of further transmissions. "Those who lose their jobs or sources of income [due to the revelation of their HIV/AIDS status] might start doing high-risk jobs where the virus could be easily transmitted," Li said. Prostitution is one of the common recourses when other sources of income dry up.

Prevention and care 

To eliminate discrimination is one of goals of the UN plan to end the AIDS epidemic as a public health threat by 2030.

People working to create awareness about HIV/AIDS patients say prevention is an essential tool to address discrimination.

"If we can't tighten the faucet, the dripping will never stop." It's a favorite saying of Zhang Yinjun, co-founder and Managing Director of the AIDS Prevention Education Project for Chinese Youth (APEPCY), a non-profit organization engaged in raising young people's awareness about HIV/AIDS and sexual health.

The 47-year-old advocates sex education for children to halt new infections. "Sex has been a taboo subject in China. One is not supposed to talk about it openly, especially with children," she said, pointing out that this mindset was preventing sex education from receiving adequate attention and resources.

Meanwhile, the Chinese Center for Disease Control and Prevention's report shows there is an urgent need for sex education, starting from school.

Zhang's APEPCY runs educational activities in schools, using books, videos and lectures. They started in a middle school in Fushun, northeast China's Liaoning Province, in 2007. APEPCY usually works by training one teacher from each partner school to teach students about sex and health. So far, 625 schools have been part of this sex education project and thousands of teachers have been trained.

 

A technician checks an HIV rapid test kit at the national AIDS laboratory in Xinqiao Hospital, southwest China's Chongqing Municipality, in December 2015 (XINHUA) 

Unfulfilled vision 

While Zhang fights the battle in classrooms, Wang Kerong works at the frontline of the fight against HIV/AIDS.

The 53-year-old is head nurse at the Home of the Red Ribbon, a social organization affiliated with Beijing Ditan Hospital. She started nursing HIV/AIDS patients in 1997. Now she has 1,000 patients' phone numbers, ready to answer their call 24/7. She also teaches them how to deal with emergencies like a condom tearing or a bleeding finger. A bleeding injury and unprotected sex are two ways in which HIV infection can occur when in the company of someone who already carries the infection.

Founded in January 1999, the Home of the Red Ribbon is the first social organization for AIDS care in Beijing. Its seven-member team includes nurses, a pharmacist, two trained volunteers and two nuns.

Besides monitoring the physical condition of her patients, Wang Kerong provides them with emotional support and links them to available community care. In addition, she organizes social activities and recruits and trains volunteers. In 2013, she was awarded the Red Cross Florence Nightingale Medal as a tribute to her work.

Wang Kerong has a vision. "I have long held a dream that HIV/AIDS patients would be able to receive equal, timely medical treatment and live as normal a life as possible without discrimination," she told the media two years ago. That dream is yet to be fulfilled.

(Wang Bing's name has been changed to protect his identity) 

Copyedited by Sudeshna Sarkar 

Comments to lifangfang@bjreview.com  

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