Gao Yaojie, an AIDS prevention activist living in exile in the United States, once pointed out that the current number of individuals diagnosed with AIDS in China is far higher than official statistics report. Many are unaware of their illness or unwilling to seek medical attention. Although Chinese officials provide free drug treatment programs, free drugs also have unavoidable side effects and drug resistance. At the same time, once an HIV infection is diagnosed, this data will be on the intranet of various institutions in China. Out of privacy concerns, many of those diagnosed have also played a "cat and mouse game" with disease control departments. Coupled with the inherent prejudice, discrimination, and stigma of HIV-infected people in China, the process of diagnosis and treatment is more difficult than one can imagine. Xiaowei, who has been diagnosed with AIDS and is living in Beijing, shared his 10 plus years of experience of AIDS diagnosis and treatment to Wainao and revealed the hidden struggles faced by those diagnosed. Xiaowei is a pseudonym. "In the summer of the 2008 Beijing Olympic Games, I went to Tuanjie Lake to swim and sunbathe every day. When I went home at night, my body itched so bad that I often couldn’t sleep at night. Skin ulcers appeared on my body one after another. By the end of summer, ulcer wounds appeared on my face and applying medicines did not help. Peter, a reporter friend from the United Kingdom, saw my situation and gave me an imported HIV kit. My self-test result resulted in two red lines—positive. Over the next two weeks, in quick succession I went to two public hospitals for HIV blood tests, but the results were both negative. At that time, I had no other symptoms except for the skin ulcers, so I chose to just ignore everything and trust public hospitals." "In my entire education, from elementary school to university, I never heard the term AIDS. I went to the Capital Library and the National Library to search for books on this, but I searched in vain for a few days and never found any books about AIDS." "I struggled, and in the winter of 2010 I was admitted to a public hospital in Beijing with AIDS and pneumonia. At that time, I weighed only 40kg and felt that a gust of wind could blow me over and had a reduced hemoglobin level of 180g/l that caused blue and purple bruises all over my body. I had a persistent high fever, difficulty breathing, and weakness that made it difficult to walk. The next day, the nurse drew seven vials of blood from me. When the blood test report came back at noon, the head nurse told me to transfer to a hospital." “I was confused and asked the reason. She said that HIV was detected in my blood, and no doctor in their hospital was willing to see me. The nurse pushed my bed into the corridor. After that, this hospital wanted nothing to do with me.” Professor Lu Hongzhou, an AIDS researcher in Shanghai, was interviewed saying that AIDS will cause patients to feel stigmatized and affect the willingness of potential patients to self test. He pointed out that most who are diagnosed with AIDS in China have other symptoms and get blood tests in the hospital before being tested for HIV. Once confirmed to be HIV-infected, the patient is required to go to a designated hospital for treatment. For example, in Beijing, there are five designated hospitals including Ditan Hospital, You'an Hospital, Harmony Hospital, and Fifth Medical Center of PLA General Hospital. However, in provinces with relatively scarce medical resources, some have only one or two designated hospitals. In Xiaowei's personal experience, ordinary hospitals use "going to designated hospitals" as an excuse to evade or refuse treatment for other diseases HIV-infected patients have. After his diagnosis, he began to move between different medical and administrative agencies. “After asking around and getting friends’ experiences, the only hospital that was able to receive AIDS patients was Xiaotangshan Hospital in the suburbs of Beijing, which was a quarantine site specially built for SARS in 2003. The next day, my friend drove over two hours to take me to the hospital. However, it was a waste of time. The hospital said that the diagnosis must be confirmed by the Chinese Center for Disease Control and Prevention (CDC) before they could admit me." “When I was sitting in the CDC’s office and explaining why I was there, the staff member put a few forms on the table in front of me and asked me to fill them out and sign them. The forms clearly stated, 'homosexual intercourse experience', 'number of homosexual intercourse partners, names’, ‘receiving therapy for homosexuality’ and so on. These not only invaded my privacy, but even required me to admit to the ‘crime’ of homosexuality. I refused to fill out the forms. A female staff member threatened me harshly: ’You are a criminal if you leave this building; if you make it out to the streets you’ll be spreading poison; you should carefully study the Infectious Disease Law...’ I staggered out of the CDC, her yelling gradually fading. At that moment I decided to give up on treatment and hoped to end my life soon." Wainao consulted publicly available information from the Chinese Center for Disease Control and Prevention. Within a 2015 announcement titled, “National AIDS Comprehensive Prevention and Control Demonstration Zone Supervision and Evaluation Program”, it is stated that “prostitutes, men who have sex with men, and drug users" are the main groups targeted for AIDS monitoring. It also includes statistics on the number of sexual partners of infected persons. According to the “China's Infectious Diseases Law,” if a medical institution diagnoses a patient with AIDS, it “should take necessary treatment and control measures based on the condition of the disease.” However, CDC staff have no legal basis for Xiaowei's claim that “leaving the building is a crime.” Later, Xiaowei met a doctor from Canada in an underground church through his UK reporter friend. The doctor arranged for him to stay in a private hospital in Beijing and gave him some spiritual encouragement. "My ward was on the third floor with a bed by the window. The doctor injected antibiotics three times a day and drew blood once a day. His healthy hands were very dexterous, and he easily treated a few bedsores on my back with medicine. Within a week, I was out of bed and ran to the park opposite the hospital to feed the wild ducks. "When I was discharged from the hospital, I kept in touch with the doctor. His words were like royal edicts, and I had no choice but to take heed: ‘The criticism and vilification of those diagnosed with AIDS in China causes far more suffering for those diagnosed than the disease itself. In fact, physiological illness has nothing to do with integrity, but there rather is a disease of civilization among the general public.'" Fighting against the “disease of civilization among the general public” was the most difficult problem for Xiaowei during the treatment process. Although NGOs and medical practitioners have conducted HIV science advocacy for many years, and Chinese law stipulates that “no place of employment or individual shall discriminate against HIV-infected persons, AIDS patients, and their families,” prejudice against HIV-infected people still exists. At one point, Chinese airlines refused to fly HIV-infected individuals, and boys diagnosed with AIDS were banished from their villages. “Many patients I know don’t go to public hospitals but buy generic drugs on their own. On the large display screens in public hospital waiting rooms, patient information such as ‘xxx, AIDS, No. 3 consultation room’ will be displayed. When seeking medical care, company medical insurance cards will have all this information for the company’s human resources department to see, and they will not be able to get ahead in the company." In 2016, the information of hundreds of individuals with HIV in China was leaked. They received calls from strangers who knew their names, ages, addresses, ID numbers, places of employment, and even family members. However, only a small number of people choose to report these calls to the police because they were worried that asking the police for help would cause them additional harm. Isolated and feeling helpless, these individuals usually start their social media usernames with "A" or put the character "艾 [Ai]" in their names as a coded way of recognizing each other and finding comradery. Xiaowei told Wainao that there is a "circle of patients" in Beijing—everyone fully understands that they are marginalized people, like “wandering ghosts”, and some in the group simply couldn’t go on and took their own lives. “In the late autumn of 2016, as soon as my friend’s solo exhibition ended on Long Island, New York, his works were directly transported to Stockholm for a touring exhibition in Sweden at the end of the year. At the same time, Taschen Publishing released his art book. At 4 a.m. while in Paris, he was bombarded by a series of international long-distance calls. People with unknown numbers accurately reported his name, age, ID number, and HIV status. They told him to watch this step, and that if he didn’t transfer 50,000 yuan at a designated time, his medical file would be published on the Internet. One week after he transferred the money, the other party continued to blackmail him, adding another 100,000 yuan..." “The New York Times reported that people living with HIV in more than 30 provinces in China said they were blackmailed and received extortion phone calls, and that their personal information was leaked by the CDC. Only 275 people with AIDS have filed reports with the police in China; most people have chosen to give in and remain silent. Just like many social incident outbreaks, the rights and interests of those who file reports with the police are not protected but are suppressed to maintain stability. Leakage of citizens’ information has become the norm. Because of their ignorance of how HIV is contracted, people have a common and ill-informed view of individuals diagnosed with AIDS. Once this diagnosis is made public, an ordinary citizen will be discriminated against, abused, and driven away, not to mention public figures like my friend. I am sure this is one of the straws that broke the camel’s back.” In June 2021, researchers from Penn State’s College of Medicine issued a report stating that people living with HIV and AIDS are more likely to have suicidal thoughts than others, and that the probability of dying from suicide is 100 times higher. The report also pointed out that although AIDS treatments have made great progress and quality of life has been significantly improved, the concurrent diseases, neurological changes and social stigma brought about by HIV and AIDS cause psychological crises for those diagnosed. "It feels like a nightmare, struggling my utmost to get out but still I can't wake up from the dream." When Xiaowei met up with his fellow friends diagnosed with AIDS in Beijing, he found that some of his them were already so thin as to be emaciated, some couldn’t be found, and some “endured to the end and lay down on the bed without the strength to even commit suicide.” Wainao asked Xiaowei, with so many friends having passed away over the years, did he have any plans for his own life? "My plan is to keep surviving."