A doctor makes a quick test on HIV antibodies in a lab at the Third Military Medical University in Chongqing on December 1 (XINHUA)
Xie Jun (pseudonym), a patient with advanced lung cancer and in need of an urgent operation, was rejected by a hospital after disclosing, just before the operation, that he has HIV.
Xie published his account on the micro-blogging site Weibo on November 18, right after he was turned away for the operation. Just one year earlier, the Joint United Nations Program on HIV/AIDS (UNAIDS) named the hospital that rejected Xie－Xiangya Hospital of Central South University in Changsha, central China's Hunan Province－as a model hospital that had never rejected a patient diagnosed with AIDS.
The episode caused uproar among those living with HIV/AIDS in China and restarted a conversation in health circles about how to safely operate on high-risk patients.
A popular female activist called Miss Yue on Weibo forwarded Xie's post with the comments, "It is a shame for a hospital with such an award to reject patients who are HIV positive. We need an apology, and the hospital needs to operate on this patient immediately."
The incident came shortly before World AIDS Day, a UN event intended to raise awareness for people living with HIV/AIDS. The National Center for AIDS/STD Control and Prevention under the Chinese Center for Disease Control and Prevention released its updated HIV and AIDS statistics on November 30. According to the release, 575,000 people had been infected with HIV or AIDS in China as of the end of October, up from the 437,700 reported in 2013. Of those cases, 97,000 were newly reported between January and October.
Some HIV/AIDS activists warn that occurrences like the one at the hospital that turned Xie Jun away are likely to happen with more frequency.
Xiaoqiang, another activist living with AIDS in Shanghai, revealed on his Weibo that almost every HIV-positive patient has had experiences similar to Xie Jun.
"We definitely tell the doctors about our conditions before receiving treatment, but it has always caused unnecessary worries and then we get rejected," Xiaoqiang said. "In most cases, they change the treatment method from an operation to a more 'conservative' one, which largely reduces their contact with us."
Miss Yue, who also has AIDS, wrote on her blog that such worries are mainly a symptom of people's biased stereotypes of people living with HIV/AIDS. "In their eyes, we are just bad people that have sex randomly with other people or take excessive drugs, so they think we deserve this. I don't know why this disease is so closely related to a moral standard. Other diseases, such as hepatitis B, are transmitted through the same channels as AIDS, but those patients are seldom rejected."
Meng Lin, the longest surviving person with AIDS in China, was diagnosed at the end of 1995. At that time, there was no treatment available in China for people living with HIV/AIDS, and everyone in the hospital, medical staff and patients alike, had little knowledge of the disease and were subsequently terrified of it.
Finally, Meng was accepted by the Beijing You'an Hospital, which specializes in infectious diseases. The hospital was trying to develop AIDS treatments that incorporated traditional Chinese medicine.
Meng and a few other people with AIDS were kept in isolated, sunless wards next to the hospital morgue for three months. At night, they were locked indoors in case "we might go out and do harm to the society."
"Faced with widespread discrimination and the huge stigma attached to being HIV-positive, I lost all hope," Meng wrote sharing his experience in the newsletter Our Voice published by the China Alliance of People Living With HIV/AIDS in 2009.
"Our country has provided free medicine to people living with HIV/AIDS since 2003. Before that we either waited to die or spent a huge amount of money to buy medicine from abroad," said Meng, who was able to come up with the funds and had friends who could get the medicine for him.
After the disease was under control, Meng went back to his normal life and became a successful businessman and founded Ark of Love, an organization that aims to inform and help those living with HIV/AIDS organize and set up their own structures to give each other help and defend their liberties.
But Meng's life took a turn for the worse in 2005 after a TV program showed his face and made his health status public without his permission. He told China Youth Daily in November 2013 that his business partners left him, along with his friends, and that he had to sell his company and become a full-time volunteer at the Ark of Love.
"I have been living for 20 years with AIDS and have tried to commit suicide quite a few times. I know what people living with HIV/AIDS really need and my story alone is encouraging enough to help them pick up hope and live on," Meng said.
In 2008, UNAIDS in China gave Meng an award for "an outstanding contribution in the field of AIDS." He was also given the Barry and Martin's Trust prize, the first time the charity organization's prize had been awarded to an individual with AIDS.
Having witnessed at first hand the arrival of the epidemic in China, and the development of the government's response to it, Meng said that the current situation is much better now that people have more knowledge on HIV/AIDS. But the stigma attached to disease is still stubborn and needs more time to be removed.
To help combat the stigma and discrimination people living with HIV/AIDS face at hospitals, the Chinese Government issued a regulation in 2006 stating that no hospital can reject these people and that they will face punishment if they do, but it failed to detail exactly what that punishment would be. Hospitals all over the country claim that they never reject patients with HIV/AIDS, but the facts paint a different picture.
In September 2012, Meng was denied a CT scan by a Beijing doctor. Two months after that, Xiaofeng, the pseudonym of another person with AIDS and in need of a lung operation after being diagnosed with lung cancer, was turned away by a hospital. Li Hu, former head of Haihe Star, a Tianjin-based NGO that helps people living with HIV/AIDS in local communities, helped Xiaofeng change his medical records to conceal his HIV-positive status, which allowed him to finally get the operation.
Li later posted the story online, igniting a debate about the frequency with which patients with HIV/AIDS are denied medical treatment.
Li Keqiang, then Vice Premier and now Premier of the State Council, China's cabinet, took up the cause after learning of Xiaofeng's case in the media.
In November 2012, Li Keqiang sat down with Li Hu and other 12 NGOs that provide assistance to people living with HIV/AIDS. "We are excited to express all of the medical obstacles that people living with HIV/AIDS face," Li Hu told China News Service at the time. "But I know the situation will not be very optimistic as the discrimination we face is steadfast and solid."
On August 6, 2014, Li Hu, who himself had AIDS, passed away at the Beijing You'an Hospital, one day after his 40th birthday. Though he was seen as a controversial subject in the general public, many people associated with the HIV/AIDS plight saw him as a hero.
"He did a lot to fight against patients being rejected for medical treatments," said Xiaoqiang on his Weibo. "Only we know how harsh and difficult it is and it is still going on."
On November 3, a 17-year-old named Xiaolin, who is HIV-positive, operated on himself at home in Xi'an, Shaanxi Province, with a pair of scissors after several hospitals rejected to treat his genital warts.
"I felt hopeless and could not find an alternative way," he told Wu Yong, Director of a local HIV/AIDS NGO Home of Love.
Wu tried to connect the young man with other hospitals but all of them refused to treat Xiaolin after learning about his conditions.
"Patients and doctors are like two sides of a coin. Both have their own rights and concerns, some are contradictory and some consistent. The interests of both groups are based on information transparency," Chen Wei, Assistant Director of the Department of Parenteral and Enteral Nutrition of Peking Union Medical College Hospital in Beijing, told Xinhua Daily Telegraph on December 1.
Chen has been treating people living with HIV/AIDS for more than 10 years. He thinks the current predicaments concerning medical services for patients with HIV/AIDS are caused by regulatory flaws.
"Under current regulations, doctors are allowed to redirect patients with HIV/AIDS to hospitals that specialize in infectious diseases, but those hospitals are often not qualified to perform the major surgeries that the patients often need," Chen said.
Copyedited by Jordyn Dahl
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