It's a muggy day in Bangkok, Thailand, but in the waiting room of the Bumrungrad International Hospital, the air conditioning is on full blast. Wang Jie has been waiting for more than two hours now: usually, it's no longer than 15 minutes, but the patient ahead is taking a long time. He learns later that some people need extra support from the doctor if they are unable to cope with the news of their HIV diagnosis. It is August 2019, and Wang has traveled to Thailand for medical treatment for the first time. Just two days earlier, he took a routine home self-test for HIV, and saw two red lines emerge: a positive result. Wang Jie had been in the habit of testing himself for some time since his partners didn’t use condoms. A friend of his tested positive just over a year before, and he did a lot of research and gathered a lot of information from HIV prevention volunteers. So the thought that he could be next was always in the back of his mind. "But when it did actually happen to me, I panicked, and started contacting my friends," Wang recalls. "They told me to get on a plane to Thailand straight away, and get tested there. I listened, because I was really worried about the issue of privacy [in China], and also that I would be discriminated against in hospitals." What Wang Jie and his friends feared was that his test results would be reported to the Chinese Center for Disease Control and Prevention (CDC), show up on his medical records, and affect his future treatment in hospitals, popping up in the system as soon as he swiped his medical insurance card. He also worried that the information would leak out of the medical system and start affecting every aspect of his life. Wang Jie mentioned his concerns about privacy issues several times during the conversation with Wainao. Treatment in Thailand The website of the Bumrungrad International Hospital offers information in six languages including simplified Chinese, Japanese, Indonesian, and English, and sees people living with HIV from a range of different countries. An infectious disease specialist at the hospital stated in 2020 that the hospital treats around 10,000 HIV-positive people from China every year. When he went for this first test in 2019, Wang Jie spent a good deal of money on tests checking the level of drug resistance of the strain of HIV he was diagnosed with, his viral load, and his CD4 cell (T cell) count, which gave clues about his immunity. He was prescribed Genvoya, a fixed-dose combination of elvitegravir, cobicistat, emtricitabine, and tenofovir alafenamide, which is an effective first-line treatment for HIV-1 infection. Unlike the free combinations offered by China's CDC (for example, the Tilayi combination of tenofovir, lamivudine and efavirenz), Wang only needs to take a single pill at a time, making keeping up with the dosing regimen easier. Resistance to this combination is also rare. In China, Genvoya costs around 3,000 yuan a bottle, but Wang can buy a bottle in Thailand for just 1,000 yuan. He bought enough to last him for six months. He plans to go back to Thailand every six months to run tests. The Thai Red Cross AIDS Research Centre offers a cheaper option, with prices around half those of Bumrungrad, but it has been forced to ration medicines after an influx of Chinese nationals left them with no supplies. Wang typically spends tens of thousands of yuan on plane tickets and hotels each trip, but he regards it as part treatment, part vacation. "I have it much easier than a lot of people," he says. Despite the initial sense of panic, Wang has quickly reconciled with his diagnosis. With the medicine regimen prescribed for him, he now feels good -- both physically and mentally. "It seems as if this disease isn't actually going to bring me any pain," he says. "The hardest part is psychological; as long as you can cope with that, then you're no worse off than anybody else," Wang said, adding that he has carried on dating, and has disclosed his HIV status to partners. Wang says he has developed the ability to predict who will react rationally to this disclosure. "I can sense whether or not they’ll react with an open mind," he said. He gives an example of a friend in Yunnan to whom he introduced PrEP, a drug recommended to people who have not consistently used a condom, have a HIV-positive partner, or share needles to inject drugs, that reduces the risk of getting HIV. The friend was disgusted. "Only people who lived depraved sex lives would think of taking a drug like that," he told Wang. "I certainly wouldn't disclose my status in a situation like that," Wang says with a bitter smile. "But I also have partners who have studied overseas, and who understand the various preventive measures for HIV," he said. When Wang discloses his status to that kind of person, he is met with care and concern, and the infection “wouldn’t become an excuse for a break-up.” The impact of the COVID-19 pandemic With the daily antiretrovirals and biannual travel to Thailand for tests, Wang's plan was to delay an official diagnosis in China. And then the pandemic hit. In early 2020, the central Chinese city of Wuhan was placed under lockdown, with travel restrictions in place across the country, and people off work until well after Lunar New Year. Numerous individuals living with HIV-were left stranded by the travel bans, unable to get back to the cities where they were registered as patients and from the CDCs that normally dispensed their medication. They had to pay deposits so volunteers could lend free medicines to them, and they would return the medicines by mail after going back to their registered cities and regaining access to CDC’s free medicines. Wang Jie couldn't get to Thailand to fill his prescription and get his check-up. Luckily, a friend introduced him to someone who knew how to get hold of imported medicine, so he was able to keep taking the Genvoya. But he couldn’t get his viral load and CD4 count tested. Given the ongoing pandemic, Wang didn't know when he would be able to get to Thailand again, and was forced to rely on a subjective sense of his own well-being, in the absence of data on which to base adjustments in treatment plan. So when he started to experience dizziness, he didn't know whether the virus was developing a resistance or the dose wasn't enough to control the viral load. Fearing the worst, Wang went to a hospital in Shanghai for treatment. Unsurprisingly, the hospital wanted to run blood tests to check for infectious diseases before he could see any doctor. He was told that the results usually came back in a day, but, two days later, they still hadn't arrived. There had been some kind of hitch. When he told the doctor that he was HIV-positive, the doctor said, "Sorry, but we have to report your status to the CDC." Nonetheless, Wang didn't experience any obvious discrimination from the doctors and nurses, all were friendly and caring. Overall, he felt things hadn't gone too badly, and was relieved that the test results showed that his dizziness hadn't been caused by HIV. There was still no call from the CDC. He learned from other people living with HIV that his positive test result would be registered with the CDC and AIDS prevention agencies, who should follow up with a phone call and an inquiry about his access to drugs. But no phone call came. Was his diagnosis even logged by the CDC? "I don't mind the government knowing. But I don't want society to know," Wang says. Then, Wang was turned down for cosmetic surgery by the Huadong Hospital in Shanghai. "Because of your HIV-positive situation, we can't help you," they told him. Limited choice of hospitals for those living with HIV According to an interviewee in Beijing who disclosed his HIV status to a doctor during an endoscopy, the doctor called two AIDS experts who advised that routine protection was enough to protect healthcare workers from HIV. Two layers of gloves, a face screen and protective clothing was plenty -- far less than was needed to protect against COVID-19. But the doctor still insisted on transferring him to Beijing You'an Hospital, which is a designated facility for those with HIV. Doctors in China can refuse to perform surgery. Even though the protective protocols in place in tertiary hospitals in China are more than enough to protect against the risk of HIV infection during surgery, doctors in those hospitals will still insist on transferring patients to designated HIV hospitals, claiming that their hospital doesn't have the protective protocols in place to treat them. But these designated facilities don't offer certain surgical specializations, meaning that patients living with HIV don't have access to the best possible treatment. In Beijing, two of the designated hospitals for patients with HIV are You’an Hospital and Ditan Hospital. "Out of all the doctors and resources available, we only get to go to the designated hospitals; such is our fate," an interviewee tells Wainao. Wang Jie has been refused treatment on more than one occasion now. A while ago, he went to get a tooth extracted. He was careful to check international guidelines that no blood tests would be required, and that dentists were required to wear PPE, protecting them from exposure to HIV. But the Shanghai Public Hospital required a blood test prior to a tooth extraction, and refused treatment when it saw Wang had HIV. In the end, Wang had to pay significantly more for a private dental clinic run by someone from Japan. "In China, you need some extra money in the bank in case you run into problems like this," Wang says. Individuals with HIV often signal their status on social media with an “A” in their username, or the Chinese character "艾(Ai)," so as to be able to identify each other, share information, and offer mutual support. The subject of blood tests and the refusal of treatment often comes up. Some people post on social media after they are left with no access to treatment at all. "I'm not trying to be greedy, but I have people who need me. Am I just supposed to die now?" one comment reads. Being young and strong, Wang Jie doesn't need to see a doctor very often. He just needs to keep up with his drug regimen and get tested regularly. Now that he cannot travel to Thailand, he has sought out a sexual health clinic for young people in Shanghai to get his viral load and CD4 tests done, so he will have the necessary information to inform his treatment plan, believing that clinic will maintain patient confidentially. He follows all the latest research on HIV treatment regimens. When Gilead Sciences entered the Chinese market, Wang switched to Biktarvy, a more advanced form of combination therapy that costs 3,680 yuan a bottle. Like Genvoya, it's a single pill, but you don't have to take it at mealtimes, and there is a flexible window of up to two hours for each pill. Wang is well aware that his economic circumstances have given him many options, including where to get his diagnosis, the opportunity to combine his trips for treatment with a vacation, a choice about how many pills to take at a time, and whether or not to go to public clinics for a tooth extraction. Even so, he still worries that one day he could get in an accident and be refused surgery by doctors in all of the tertiary hospitals. "I'm in good health now," Wang says. "My most pressing worry is about what happens if I need to see a doctor in future. I know they'll take me to a hospital like Qingshan or Ditan if I need surgery. In the longer term, I'm thinking about ways to leave China." (Wang Jie is a pseudonym.)