Patients desperate for latest medicines turn to buying ingredients online
As it takes at least three to five years for medicines developed overseas to be approved in China, many patients desperate for the latest drugs are now buying the ingredients online from illegal dealers and processing them on their own.
After exhausting every other medical avenue he could find, Ling Hao (pseudonym) decided to make a last-ditch effort to save the life of his 61-year-old mother. He purchased active pharmaceutical ingredients (APIs) to make his own medicine.
His mother tried all the relevant medicines sold on the Chinese market but her cancer still spread from her lungs to her brain. So Ling decided to give his mother what he calls the last "trump card" - 9291, the code for a cancer drug that hasn't been introduced to the Chinese market, a drug that are still being researched domestically.
The codes 2992, 4002 and 9291 are the three mentioned most frequently in cancer patient support groups in the past years.
AZD9291 refers to the third generation of the anticancer medicine Osimertinib. Because of its effectiveness during clinical trials, it has been approved by the US Food and Drug Administration (FDA). However, the medicine is still going through China's slow clinical trial phase and hasn't yet been legally approved for sale.
It usually takes three to five years or even longer to import medicines developed overseas to China as Chinese law says that all medicines need to be first tested by domestic watchdogs. But cancer patients who have only a few months left to live can't wait.
In the past, many patients got friends or middlemen to buy them medicines when traveling overseas. But after Lu Yong, a businessman and chronic myelocytic leukemia patient, was charged in 2014 for selling drugs he purchased in India, some people are now turning to a more risky way to getting these drugs - buying the chemicals online from lawbreaking dealers and trying to make the medicines on their own.
"Now many patients are becoming doctors and chemists. About one third of the patients I've met bought APIs to make medicines on their own," said Wu Yilong, the deputy director of Guangdong General Hospital.
But this could be deadly for patients. He recalled that when API 9291 first appeared, a patient of his died suddenly after using a DIY version of the drug.
More expensive than gold
When APIs are used by pharmaceutical companies, they go through strict processing standards to ensure the consistent quality of the resulting medicine. But DIY druggists have neither the time nor capability for such precision.
Articles circulate among cancer patient groups instructing patients on how to make medicines which list the necessary equipment, the required method and how to deal with side effects.
All the equipment needed to weigh, proportion and otherwise crudely process APIs can be purchased on taobao.com, China's leading e-commerce website.
But it's hard to find the API for 9291. Ling eventually got it from K, a lung cancer patient. K survived his bout with cancer by using 9291 and now he makes a living by selling the API needed to make it.
Ling bought three grams of the API from K - enough for a month of treatment - for 600 yuan ($90) per gram. "It is even more expensive than gold," he said.
To avoid unnecessary wastage, patients have learned that it's necessary to use tin foil or oil paper to weigh the powder and fill the capsules. "If you use normal paper, the powder will get stuck to it," Ling explained.
Mixing the potentially life-saving (and potentially life-ending) powder tests people's nerve and dexterity. Before moving the powders, Ling puts on a pair of clinical gloves to avoid his sweat making the powder stick to him. A mask is a must, because the skin around his mouth and nose could have a reaction to the powder if he breathes any in.
Ling follows the procedure step by step. He doesn't dare make any mistake. Every one gram of API is mixed with four grams of auxiliary materials and shaken well.
"Only when you mix them fully, will the side effect be minimized," he said, adding that it's best to sift them more than 20 times.
When your hands get sore, then you know you can put the powder into the capsule, he said.
He then fills 30 capsules with each 5 grams the mixture, enough for a month's course of treatment.
A novice can take up to five hours to filled just a few capsules. So some vendors have started to offer a capsule-filling service to make extra money.
