Some Chinese HIV/AIDS patients give up free medication to buy drugs from overseas

By Xu Ming Source:Global Times Published: 2018/4/25 18:23:39

Negative side effects make patients turn to drug agents traveling to Thailand

Chinese HIV-positive patients turn to Thailand and India for self-paid drugs, cheaper prices and privacy protection

Some medicines in Thailand are limited for purchase as the demand from China increases

New boom for foreign medicine reflects defects in AIDS treatment back in China

An HIV-carrier and his medicine Photo: VCG

Cheng Shuaishuai went to Thailand - again - last week. Like before, he came only for the antiretroviral AIDS medicine. This time he bought the drugs on the behalf of 10 HIV-positive patients in China.

Over the past four years, Cheng has been to Thailand at least 30 times. In 2003, the Chinese government began providing free antiretroviral treatment for citizens living with HIV/AIDS, but many who suffered from side effects (or for other reasons) instead turn to neighboring Asian countries for the drugs, creating big business opportunities for agents like Cheng.

"My 'clients' include patients who refuse to register for free medicine in order to protect their privacy, who could not obtain free medicine in their city, or who had physical difficulties adjusting to the drugs," said Cheng.

Among his clients are also high-risk people, including homosexuals and spouses of HIV carriers, who require the medicine to prevent possible infection. Many who have suffered from side effects from the free medicine now turn to overseas drugs that are not affordable for them in China.

As thriving as his business might be, Cheng has been humbled by his work. The young man, born in 1990, has also been criticized for "dealing in AIDS," with many saying that he is "making a profit off of dying people."

But agents like Cheng have also won applause from AIDS/HIV-infected patients and their family members for helping them get their medicine.

"I used to denounce such businesses before, but now I regard the whole thing differently," said Lucy, whose parents are HIV-positive and who regularly purchase drugs from Cheng.

"It is true that Cheng is earning money, but he is also doing these patients a favor, because they cannot buy cheap and effective drugs in China yet themselves."

Meeting demand

Cheng bought more than 70 boxes of the drugs on his latest trip. Learning that one person only can carry at most 30 boxes of medicine, for self use, through Chinese customs, Cheng asked several friends, who went to Thailand for the Water-Sprinkling Festival, to help him on a commission basis.

He feels that an increasing number of HIV-positive Chinese patients are taking self-paid drugs, particularly in the past two years.

According to statistics, in 2016 there were about 660,000 people infected with HIV in China. To better control the disease, starting in 2003 the Chinese government allows every HIV-positive patient, as long as they get registered at authorized centers for disease control and prevention, to regularly receive free drugs and tests.

It was reported that 90 percent of infected Chinese had their virus suppressed after receiving the free treatment. But not everyone was lucky enough.

Lucy, whose parents were infected 10 years ago, told the Global Times that she turned to foreign medicine mainly because her mother could not bear the side effects of the free Chinese medicine anymore.

"My mom vomited badly after taking those drugs for eight years, she could barely eat. So I had to turn to self-paid drugs. Who would give up free medicine if they work?" said Lucy.

She first tried self-paid drugs in China via lawful channels, but Lucy later met Cheng through another AIDS patient and found that the medicine sold in Thailand is much cheaper. After that, she asked him to buy her the medicine regularly.

She revealed that her parents have been taking self-paid drugs for two years and that their health condition is stable. "Previously, my mom had to go to a hospital several times a year. Now the disease is well controlled," said Lucy.

Eric, who found out he was infected with HIV six years ago, buys medicine from Thailand also because of the negative side effects of China's free medicine.

"Free domestic medicine in China updates too slowly, but the best medicine is too expensive. After all, for us, the happiest thing is to get medicine that is both cheap and effective," Eric explained to the Global Times.

People who want to protect their privacy, such as AIDS/HIV-positive teachers or civil servants, also seek help from Cheng. Afraid of losing their jobs after exposing their information to the disease control centers, many prefer to buy medicine from abroad instead. Cheng's first-ever client was a teacher.

Patients who do not have a residence permit for the big city they live and work in are not allowed to receive free drugs, forcing them to turn to agents like Cheng. Healthy homosexuals use antiretroviral drugs for preventative purposes, but they cannot buy the drugs in China. Healthy spouses of HIV-positive patients who desire a child also have to buy antiretroviral drugs abroad.

"All in all, China cannot meet their requirements anymore," concluded Cheng.

Cheng Shuaishuai sorts out drugs he bought for HIV-positive patients. Photo: Courtesy of Cheng Shuaishuai

A gray business

Cheng is certainly not China's first or only AIDS drug agent. As early as 2004, many HIV-positive patients suffering severe side effects from the free medicine turned to NGOs that help buy overseas medicine, as reported by The Beijing News.

Searching online, advertisements for Indian and Thailand-made drugs are spotted here and there buried in Chinese forum discussions, in response to numerous posts seeking reliable agents for antiretroviral drugs.

But Cheng is one of the few who conducts his business openly. When he started offering the service on Weibo four years ago, the 28-year-old had already been profiled in the media for his involvement with AIDS.

Having witnessed the horror of AIDS in his hometown in Henan Province 15 years ago, Cheng has been deeply involved in AIDS-related public welfare since 2012 after graduation and is regarded as an AIDS activist.

Cheng became "famous" in 2012 after he opened a free apartment for AIDS patients near a hospital in Zhengzhou, Henan's capital. In an attempt to dispel ordinary people's fear of AIDS, Cheng lived with these patients.

Later, Cheng built a sharing platform for patients who lost their free drugs and those who had extra free drugs. As free drugs are supplied only in fixed quantities at specific times, many patients who lost their drugs depend on such a platform to maintain daily health. Cheng charges a "guarantee deposit," which has resulted in accusations that he is "manipulating these free drugs and making profit." "But without the deposit how could I tell whether they really need the drug or are just cheaters?" Cheng responded.

In 2014, seeing the rising demand for AIDS drugs in China, he started the agenting businesses, calling it a "charged public welfare." But the criticism continued, with some saying he was making money on "dying people."

"Some also worry about the quality and the source of the drugs, and others say that casually changing prescription medicine is harmful," said Cheng.

By 2017, a large number of AIDS agents have emerged around China to cater to the growing demand. Criticism gradually decreased once it became obvious that their services were desperately needed - and appreciated - by infected Chinese.

"While running the free apartment for AIDS patients, I enjoyed a good reputation, but I was not happy and under huge pressure. Now I am infamous for charging for my service, but I'm happy," Cheng explained, saying that charging patients money makes him feels more equal with them.

"Now it is a golden time for agents," Cheng said, adding that what he does is in a gray area but not illegal as long as he is buying medicine on the patients' behalf rather than re-selling it to them.

Making drugs purchasable

Many agents themselves are HIV-positive, according to Cheng. He explained that he is probably the only one who is not an AIDS or HIV carrier. Many patients who used to buy medicine through Cheng later became agents themselves thanks to his help.

"Compared to agents who are also patients, I'm less convincing," said Cheng. "They can prove they take the drugs by showing their medical certificates (as HIV-carriers)." He further explained that being an official HIV-carrier also helps agents bypass police scrutiny.

The growing Chinese demand for antiretroviral drugs has helped India, Thailand and South Africa pharmaceutical industries thrive, according to Cheng.

"Competition between Chinese agents is also becoming quite fierce, with new channels and lower prices," said Cheng, who revealed that there are already purchase restrictions in Thailand due to the large demand from abroad.

"People come to me mainly because of the high price of self-paid drugs in China," said Cheng, "But when the price goes down, and when patients feel that their privacy is better respected (like at the anonymous clinics in Thailand), I will be totally out of business."

Cheng emphasized that he would be very happy to see that day, insisting that he is providing a public welfare service for the common good until "no one needs it any longer."

In the meantime, Cheng has been calling on the government to cancel its free AIDS drugs and instead make them all purchasable at general hospitals under a national medical insurance plan, which is strongly opposed by many patients who are used to the free treatment. But he believes this could help dispel discrimination against AIDS patients in some Chinese hospitals.

"You have to give up some special treatment to get treated more equal," said Cheng.

Currently, AIDS patients in China must go to disease prevention centers and special "hospitals for infectious diseases" for medicine and treatment. Lacking experience in dealing with AIDS/HIV, some hospitals around the country refuse to admit infected patients.

Lucy once took her mother to a local hospital for an operation and came to an agreement with the doctor, until the doctor found out she was HIV-positive. That doctor then suggested they just "stay at home with medicine."

Tired of discrimination and being rejected by hospitals, some have chosen to go abroad for treatment, as the Global Times has found.

Newspaper headline: Dealing in AIDS

Posted in: IN-DEPTH

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