2017-04-01 11:26:52  + video 

SHANGHAI — Concentrating intently on a video game on the tablet in his hands, 10-year-old Zhang stood by his bed in a neat but empty hospital room in Shanghai. 

Zhang was awaiting a surgery to repair his urethra, which had been severely injured in a car accident three years ago. 

On Friday, one of the city's best medical centers turned Zhang away. A doctor informed the family that the hospital staff did not want to operate on the little boy because he had HIV.

“He [the urologist] told me that he would like to perform the surgery, but the surgery room [staff] would not allow him to. He said they were afraid that other patients would be infected,” Zhang’s mother, surnamed Li, told Sixth Tone.

A 10-year-old boy with HIV tries to find a hospital that will treat him in Shanghai. By Zhong Changqian/Sixth Tone

By Saturday morning, mother and son were packing their bags. They had traveled all the way from central China’s Hunan province and had informed the doctor beforehand that their son had HIV. “So I thought it wouldn’t be a problem,” Li said.

Hospital staff told Sixth Tone that those authorized to comment on the case would not be available until after the Tomb-Sweeping Festival, which falls on April 4 this year. The doctor on Zhang’s case was not available for comment on Friday or Saturday, and Li asked for the name of the hospital not to be revealed, as she feared it would negatively affect her son's chances of getting treated in the future.

A top urologist, the doctor asked if Zhang could move to another hospital that specializes in infectious diseases — including HIV/AIDS — in hopes of being able to perform the surgery there, Li said.

Since his car accident, Zhang has had to undergo around 20 surgeries at hospitals across the country to repair his urinary tract. During one of these surgeries, he contracted HIV — a diagnosis his family only learned of when another hospital refused to operate on Zhang in 2015.

The family is now suing a total of three hospitals who treated him in the past as well as a blood bank and a company that provided human albumin, or blood plasma proteins, that Zhang received during transfusions.

People living with HIV or AIDS are heavily stigmatized in China. For the 800,000 people who’ve been diagnosed with HIV, finding a hospital willing to treat them is a major hurdle, despite a 2006 regulation that says doctors are not allowed to refuse treatment to HIV-positive patients.

In the new five-year plan on HIV/AIDS prevention issued in February, the government reiterated that hospitals must not deny patients with HIV or AIDS medical treatment, no matter the circumstances.

Ten-year-old Zhang watches a movie on the bed next to his mother’s at a hospital in Shanghai, March 31, 2017. Zhong Changqian/Sixth Tone

Ten-year-old Zhang watches a movie on the bed next to his mother’s at a hospital in Shanghai, March 31, 2017. Zhong Changqian/Sixth Tone

When Zhang was hit by a car, Li and her husband were thousands of kilometers away, having migrated to China’s populous coast to find work and leaving their son with his grandparents in Hunan. “I wished I had brought him with me so that this would have never happened,” Li said.

Because many children can only attend school in the area in which they were born, migrant workers generally have to leave their children with relatives when they move to cities for better jobs. “Now his whole life is ruined,” Li said.  

Zhang is shy around strangers but full of energy. While Sixth Tone spoke to his mother on Friday afternoon, he ran excitedly around the room and folded paper airplanes.

But when he saw his mother wiping away tears, he grew quiet. Not knowing what to do, he squatted beside the hospital bed and silently played with his paper toy.

In a study on the stigma surrounding people with HIV/AIDS, respondents said that they lived in fear that others might find out about their disease, and worried that they might be threatened, insulted, or even physically attacked. 

Zhang’s case illustrates why many try to keep their HIV status a secret. Zhang had just finished first grade when he received the diagnosis, and in his small hometown, news of the boy with HIV spread quickly. His primary school informed Li that her son wasn’t welcome anymore.

Our neighbor asked us to move.

They were also forced out of their village by fellow residents. “Our neighbor asked us to move,” Li said. “They were very scared of the word ‘AIDS’ and said that even mosquito bites can spread the disease.” 

In rural China, around 73 percent of people surveyed in a study said that HIV was a “shameful” disease. 

“If we did not move, they would move away from us,” Li said of the family’s neighbors, adding that they saw no choice but to leave their home and rent an apartment in Zhangjiajie, a city in Hunan province.

The move placed the family near hospitals that would treat Zhang. Due to the lawsuit, the family’s case had been reported in local media, and the government tried to help Li find a school for her son. So far, the efforts haven’t been successful.

“Many people told me that he is very clever and that he could go to a very good school. But those words are nothing but torture to me,” Li said. 

After a year of primary school, during which he learned to read only the most basic Chinese characters, Zhang had to give up on getting an education. Instead, he spends his time watching TV and playing video games.

“Sometimes I have wanted to buy him books,” said Li, “but he refused, saying that he could not understand the words.”

Li has stopped working in order to take care of Zhang. The family now relies on the meager wages her husband makes as a lumberjack, which range between 2,000 and 5,000 yuan ($290 to $725) per month. Their last hospital stay in Shanghai cost them 40,000 yuan.

When they got off the train in Shanghai on Wednesday, they were hopeful that this would be Zhang’s last surgery. For now, Li can only hope that the infectious diseases hospital will allow the urologist to perform the surgery.

Contributions: Zhong Changqian and Denise Hruby; editor: Denise Hruby.

(Header image: 10-year-old Zhang lies in bed with his mother, Li, at a hospital in Shanghai, March 31, 2017. Zhong Changqian/Sixth Tone)