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Desperate terminally ill cancer patients in China making their own drugs

Faced with an absence of effective foreign drugs or prohibitively high prices, some terminal cancer patients on the mainland are making drugs on their own.

Such patients gather online to trade active pharmaceutical ingredients (API), the basic ingredients of pharmaceuticals which, following guidelines from fellow patients, they mix in the hope of extending their lives, according to a report in the Southern Weekend on Thursday.

The told the newspaper they could not afford to wait for drugs to be approved by the national drug regulator for use in China or could not afford the high prices of approved drugs, so DIY drugs, using formulas to replicate effective drugs approved in other markets, were their last hope.

The median survival time of terminal lung cancer patients is 14 months, but it takes between three to five years for foreign drugs go be approved by the China Food and Drug Administration, the report said.

“Many patients have become doctors and chemists. They find ways to buy API to make drugs. One third of my patients are taking such medications,” Wu Yilong, vice-president of Guangdong People’s Hospital and a lung cancer expert, told the newspaper.

Ling Hao, whose 61-year-old mother’s lung cancer had spread to the brain, decided to treat her with self-made drugs after trying all available drugs domestic drugs.

The patients referred to such drugs in the code names according to their API before they are officially approved. Ling bought AZD9291, standing for Osimertinib, a drug made by AstraZeneca to treat non-small cell lung cancer that was approved by the US Food and Drug Administration last year.

Even if patients can have access to the drug, it will cost 80,000 yuan a month, based on US retail prices.

Ling bought three grams of 9291 API for 600 yuan per gram, enough for one month’s dosage, from a fellow lung cancer patient who dealt 9291 API after his own condition stablised with the self-made drug.

“It is even more expensive than gold,” Ling said.

As instructed by online tutorials by other patients, who offered detailed descriptions of APIs and how to buy them, Ling bought instruments including electronic scales, a sieve, a grinding and mixing tool, capsules and medical starch.

Donning a medical mask and gloves, Ling cut the end of a plastic straw into an oval shape to scoop the drugs to the capsule. The electronic scales were covered in foil so that the powdered drugs could be weighed and measured precisely (powder sticks to paper, therefor altering very fine measurements). He then placed one gram of API and four grams of pharmaceutical aids (which have no therapeutic value but are necessary to make it into dosage form) into the sieve before mixing them evenly.

“They have to be mixed evenly to minimise the side effects,” said Ling. He would sift and mix the ingredients 20 times before putting the mixture into 30 capsules.

People new to the process can take four or five hours to produce a single gram of the drug. Some suppliers offer to mix the APIs and aids for a charge.

It is illegal in China to sell unapproved drugs. A leukaemia patient in Hunan was charged in 2014 for selling counterfeit drugs, and generic drugs from India, to other patients, but was acquitted last year.