Yu had fully anticipated starting a new life. At age 30, he moved to one of China’s most prosperous cities, Shanghai, for a new job in the tech industry. Having grown up in the poor northeastern province of Heilongjiang, he was looking forward to the beautiful cityscape and fast-paced lifestyle of wealthy Shanghai.
Then he learned that he had contracted HIV and wasn’t eligible for free medication in his new home city. “I didn’t know what to do,” said Yu, who is gay.
The young man began to lose hope, before discovering a solution in the unlikeliest of places: a controversial Weibo microblog account called “HIV Volunteer,” which sells cheap antiretroviral drugs. Run by AIDS activist Cheng Shuaishuai, the online service functions both as a trading platform for vital drugs that help maintain daily health for those with HIV, as well as a general source of information about the virus.
In 2015, the year Yu was diagnosed, nearly 300,000 people started antiretroviral treatment, up from just over 126,000 in 2011. It was the highest number on record of Chinese concurrently receiving the treatment — and Yu was supposed to be one of them.
Yet in order to be eligible for free drugs from a city’s hospitals and pharmacies, a person must possess either a hukou, an often hard-to-get household registration document, for that city, or a residency permit. And to obtain a residency permit, the minimum wait period is six months — a dangerously long time for HIV patients to go without treatment.
“I had even thought about giving everything up and moving back to Heilongjiang in order to get the antiretroviral treatment,” Yu said.
A person holds a package of free antiretroviral medication provided by the Chinese government, Tianjin, Nov. 23, 2016. You Sixing/VCG
Through HIV Volunteer, Yu was able to buy the drugs he needed for just 800 yuan ($116). “Cheng’s platform helped me get through the days before I eventually qualified for free treatment,” he said.
The drugs Cheng sells, which he gets from Thailand, are considered more effective than the free drugs available in China. But he also sells the free drugs given out by domestic hospitals and pharmacies, which some people consider to be unethical.
In theory, people who are not able to get free medication can simply “borrow” medicine through the platform, provided they leave a 200-yuan deposit for each one-month drug supply. But since most borrowers consume rather than return the free drugs, they’re essentially paying 200 yuan per bottle.
HIV attacks its host’s immune cells, including white blood cells and helper T cells, and weakens the body’s immune system so much that otherwise innocuous diseases like fevers or the common cold can prove life-threatening.
With the right treatment, however, the virus can be kept in check for decades, as long as an effective cocktail of drugs — for example, tenofovir, zidovudine, lamivudine, and efavirenz — is taken every day. Under a new government regulation passed last year, these antiretroviral drugs are free of charge for HIV carriers in China — a policy experts believe has had a hugely positive impact on patients’ lives.
Yu believes that HIV Volunteer, which provides a medium through which users can trade drugs they are able to obtain for free, helped save his life.
After his diagnosis, he had decided to stay in Shanghai and risk living without his medication for six months. After this time elapsed, however, he found out that he’d have to wait another three months due to an administrative oversight. By then, his CD4 count — an indicator of immune system health — had dropped from over 400 to 260, a relatively dangerous level for HIV carriers.
“I saw no way out — I felt desperate in that moment,” Yu recalled. He spent 3,800 yuan, about half of his monthly salary, on one month’s supply of a drug he should have been able to get for free.
Critics of HIV Volunteer have accused Cheng of encouraging patients to give up their own drugs for money. Some have labeled him a “drug dealer,” and state broadcaster CCTV said that selling free drugs for a profit would constitute a “very serious crime.”
But Cheng, who runs a small hotel in China’s southern Sichuan province, said he’s merely helping those in need, and that all profits are going to charity. “I used to be afraid of AIDS because there was an outbreak in my hometown in Henan province when I was a child,” he said. “But as I grew up, I had friends whose parents were living with HIV, and they were just like everyone else. That was why I started to devote myself to helping people living with HIV/AIDS.”
Some of these people, like Yu, needed medication because of hukou issues while living away from their hometowns, he said, while others were experiencing serious side effects from locally obtained drugs.
Of the HIV Volunteer users who spoke to Sixth Tone about their experiences, all were satisfied customers who supported Cheng and appreciated the vital service he and his platform offer.
Cheng Shuaishuai (seated behind kettle) shares his experience trading antiretroviral drugs online at a meeting in Guangzhou, Guangdong province, Sept. 23, 2016. Courtesy of Cheng Shuaishuai
In 2002, when Yuan’s son was 7 years old, he was infected with HIV during a surgery. One of the drugs he has to take causes anemia, so Yuan replaced it with a better-quality import she buys on HIV Volunteer.
Yuan still receives free drugs for her son and sells them online to offset the cost of the ones she buys. “I don’t want him to suffer from the side effects of the domestic drugs,” Yuan told Sixth Tone.
Experts like Zhang Ke, a doctor at Beijing You’an Hospital, said that the new drug policy has made access to essential medication easier for people with HIV. “Many more who have been confirmed HIV-positive are showing up at hospitals and health care departments because of this policy,” Zhang said, “which is also important to help our country control the scale of HIV infection.”
But Zhang also acknowledged that only seven antiretroviral medications are currently free in China, and that these tend to cause more serious side effects than top-selling medication abroad.
With more than 10,000 followers, Cheng’s microblog account has highlighted the shortcomings of China’s free antiretroviral drug policy. “People living with HIV are often stuck waiting on free antiretroviral medication,” Yu said, explaining that each move means at least six months in limbo until the necessary documents arrive. “Personally, I can’t wait another six months,” he said.
As China’s workforce becomes increasingly mobile, many people face the same, or an even worse, situation as Yu when they move to cities where they do not have a valid hukou.
A person with AIDS receives treatment at a hospital in Kunming, Yunnan province, Nov. 20, 2010. Zhang Yongqiang/VCG
Unskilled workers who do not qualify for health insurance or welfare, for example, are not eligible for free medication, and according to official government data from 2015, about 247 million Chinese are classified as migrant workers without hukou.
Feasibly, family or friends back home could present lab test results at a hospital, obtain the patient’s medicine on their behalf, and send it to them wherever they are living — but practically, the pervasive stigma around the disease means many people in China living with HIV never tell their relatives and closest friends about their carrier status.
Asking a health care professional from home to send the medication directly is another option, but since doctors are not legally required to do this, additional payments would be expected for such above-and-beyond service.
The only option many HIV patients have left, then, is to travel back to their hometowns every three months — but the incurred costs in terms of money, time, and energy are considerable, especially given that living with HIV is a lifelong challenge.
“For years, we [physicians] have called for changes, but the problem is linked to the larger household registration and health care systems, and not much has changed so far,” Zhang told Sixth Tone. “I sometimes even recommend that my financially capable patients buy foreign medication from these third-party platforms to avoid all the hassle.”
There are other reasons to use resources like HIV Volunteer, too: namely, the taboo of being HIV-positive. Cheng told Sixth Tone that many people who borrow drugs on his platform work at schools and government departments. “News spreads quickly, especially in small towns and villages,” Cheng said. “These people can easily be outed if they go to local hospitals or infectious disease centers to get drugs.”
A friend of Yu’s who did not want to reveal his name for fear of being stigmatized said that although the policy change toward free medication was a good move, the government should aim to provide a wider range of drugs, as well as drugs with fewer side effects. “China is economically more advanced than countries like Thailand, yet we have fewer choices and more expensive drugs for HIV carriers and AIDS patients,” he added.
For now, Yuan and other patients will continue to source their medication from Cheng’s platform.
“There is a need for this kind of platform due to the social stigma and the deficiencies of our medical system,” Yu’s friend said. “It has triggered controversies and medical safety concerns because it is run by an individual — but these problems should have been solved by government organizations or higher authorities. At this time, I don’t see any effective solution.”
Yu is afraid that his family might one day find out about his condition. In fact, he hasn’t visited his hometown for three years because he’s worried they might see him taking his antiretroviral drugs. “I miss my home,” he said.
(Header image: A man with AIDS looks out of the window of his hospital room in Chongqing, Nov. 29, 2011. VCG)