Covert underground market
Groups on Chinese social media platforms QQ and WeChat are the two main channels for patients and drug dealers to trade APIs. Most founders of these groups sell these drugs. If you want to buy APIs, you need to provide your clinical records to the founder and submit to their inspection to enter the group. To guarantee safety, those who haven't provided clinical records and their diagnosis certificate will be kicked out within 24 hours.
"The APIs are labeled as fake medicines in China. Selling them violates the law. And buying an API to make medicines on our own is also risky," one patient told the Southern Weekly.
The channels for getting the APIs are complex and it's hard for people to tell whether they are genuine.
According to patients and dealers, most APIs come from scientific institutes, laboratories and drug companies. The price of an API varies according to its purity. An API of "average" purity costs about 500 yuan per gram and if the purity reaches more than 99.7 percent, the API can be sold for 1,000 t0 1,500 yuan per gram.
"The side effects of highly pure APIs are much less than low-purity ones. Low-purity medicines have more heavy metals and other impurities, which can damage the patients' liver and kidney. Thighs also get puffy easily due to eating low-purity medicines," said one dealer. In his online shop, high-purity APIs are priced at 900 yuan per gram.
Another dealer guarantees that the purity of the APIs he sells for 1,500 yuan per gram is 99.98 percent. "We synthesized the APIs in a Beijing scientific institute. They're first-hand," she said, but declined to reveal the name of the institute.
Some others are quite open about the home-made nature of their chemicals. One vendor explained that a whole kit to synthesize APIs can be bought for 800,000 yuan.
One seller contacted by the Southern Weekly claimed that his medicines take effect within a month and can help extend a patient's life span by at least 10 months.
"Couriers have been checked very strictly these days. You should take the chance to buy the APIs if you want them. I still have several grams in stock," the seller urged.
Li Yinghuan, a teacher of Capital Medical University, told the Southern Weekly that most new medicines are invented abroad and then imported to China. Some 95 percent of Chinese drug companies make copycat medicines.
Once a new drug enters the market in the US, for example, its molecular structure is made public.
Then drug companies and laboratories in China make similar new medicines.
As the molecular structure is clear, it's easy to copy. According to Chinese law, it's legal for medical institutions to synthesize these APIs, but they are only allowed to use these compounds for research. Selling them for human consumption before they are officially approved is banned.
Li said that it's understandable that terminal patients synthesize APIs to make medicines on their own.
"They (patients) don't care whether it's safe or not. The side effects of the APIs are much less of a problem compared to them taking no drugs at all. If they don't take medicine, they are just waiting to die," she said.
To help or not
However, homemade medicines do carry a significant risk. "In a medical sense, the purity, proportioning and quality safety are all uncontrollable. In a clinical sense, a low dose could lead to drug resistance and a high dose could be deadly," said a scientist from the China Food and Drug Administration.
A doctor at Shanghai Huashan Hospital said that he is unsure whether doctors should help self-medicating patients or not.
"They've brought medical chaos. When patients who are taking medicines that haven't got approval in the country come to me, as a doctor, should I supervise them or not?" he said. In an emotional sense, he should help them. But the medicines' effects are unknown so doctors cannot give these patients reliable advice.
According to Chinese law, it is illegal to sell both unapproved medicines purchased overseas or such APIs synthesized in China.
The law stipulates that medicines that haven't been officially approved for production and imported are deemed as fake medicines. Producing and selling fake medicines to pregnant women, babies, children and severely-ill patients are grave crimes in criminal law.
Recently, two people working for a Nanjing, Jiangsu Province drug company were sentenced to 10 months in jail and fined for synthesizing and selling unapproved drugs.
But all patients care about is finding the most effective medicines. Now some patients are looking to PDI, a new drug available in the West which can apparently treat cancer by using the body's own immune system.
"PDI is too expensive. A single injection costs about 30,000 to 40,000 yuan and 600,000 yuan a year. This is too much for my family," Ling said.