For Sick in China, Do-It-Yourself Drugs
pharmaceuticals. Dealers run underground pharmacies. In some cases, cancer patients and their families make the drugs themselves, finding the ingredients and the instructions online.
China’s challenges are playing out globally. Many of the same problems have pit world leaders against big pharmaceutical companies. The companies complain about regulatory hurdles and approval delays. High drug prices send Americans to Canada and Mexico looking for the medicines they need. Patients from Russia to Britain desperately hunt for drugs through online “buyers’ clubs” — networks that scour the world for cheaper generic medicines.
In China, this summer’s box- office hit “Dying to Survive” was based on the real- life story of a Chinese leukemia patient who ran a buyers’ club, smuggling generic drugs from India to save himself and others. It was lauded for shedding light on the difficulties of getting cancer drugs in China.
The movie’s popularity prompted Premier Li Keqiang to call for speeding up price cuts for the medication. China’s growing affluence has led to greater expectations among its people. The Communist Party’s grip on power depends heavily on providing improved opportunities for the public, including better health care.
Last year, the police raided Hong Ruping’s modest apartment. Under a television, they found what they were looking for: medicine to treat chronic kidney disease.
Mr. Hong, who is unemployed and has kidney dialysis three times a week, explained that the drugs — cheap knockoffs of Western pharmaceuticals from India — were for him.
The officers seized the drugs, warning that they were not approved by the country’s regulators. Then, the officers let him go.
After the raid, Mr. Hong continued to receive drugs — and they weren’t all for him. Mr. Hong is known in China as a drug “daigou,” or “purchasing agent,” who procures pharmaceuticals through dubious means for people who can’t afford them or don’t have access to them.
While many Chinese use daigou to buy South Korean facial masks made of snail slime and edible birds’ nests, or infant formula from Australia, others rely on people like Mr. Hong to stay alive.
“I have this disease, and if they want to convict me, there’s nothing I can do,” Mr. Hong said. “What is the difference between going to jail and being sick? There is no freedom.”
While China has achieved near-universal health insurance, the coverage is shallow.
The situation exposes hundreds of millions of Chinese to sharply rising costs. That leads many Chinese to smuggling, especially from India, where prices of many drugs are capped. In China, the drug that Mr. Hong needed cost just over $4,200 a year, 10 times the price in India.
Dr. Shen Lin, an oncologist at the Peking University Cancer Hospital, said several of her patients couldn’t afford their drugs anymore, and had asked whether they could use generics from India. She has tried to dissuade them, saying she couldn’t vouch for drugs from unofficial sources.
Still, she said, “if they continue on their path, they would go bankrupt.”
Foreign-made drugs can be costly in China, when they are available at all. First, drugs need to be approved. From 2001 to 2016, China approved just over 100 new drugs, about onethird the number in advanced countries. Drugs could take six to seven years to get the green light, turning cancer for many into a death sentence.
Late last year, the Chinese authorities said they would begin allowing drug companies to submit data from foreign clinical trials. Approval times have dropped to two to three years. China has thinned its backlog of new drugs waiting for approval to 4,000 from 22,000 in 2017. The government is also pushing to develop more innovative pharmaceuticals to combat life-threatening diseases.
Still, the agency remains short staffed. China had roughly 600 reviewers at the end of 2016, compared with thousands in America.
Once approved, the drugs have to qualify for coverage under one of China’s insurance plans. That means earning a spot on the National Reimbursement Drug List — and that can take years. Beijing added 36 drugs to the list in 2017 and 17 this year. The last update was in 2009.
When the drugs do arrive, many Chinese patients, like Yao Xianghua, can’t afford them. A former elementary school teacher, Ms. Yao had lung cancer that didn’t respond to surgery or a treatment called biotherapy. She was 68 in 2011, when the cancer was diagnosed, and she felt she was too old to undergo chemotherapy and radiation.
“I give up,” she told her son, Zhang Zhejun. “I’m resigned to my fate.”
Her doctor prescribed Iressa, a drug made by AstraZeneca. The drug had been added to the reimbursement drug list after AstraZeneca agreed to halve the price to just under $1,000 a month.
It was still too expensive. Ms. Yao received a monthly pension of $ 460 and her insurance did not pay for imported drugs. Mr. Zhang vowed to save her. He quit a decent-paying job and moved in with his parents in a barely furnished apartment in Jinzhou, an industrial city.
Mr. Zhang discovered that India made a cheaper, generic version of Iressa. It worked for a while. But Ms. Yao developed a resistance to it after about nine months. Mr. Zhang needed alternatives.
He went online.
China has become the world’s larg- est home of internet users. Many Chinese now shop in internet bazaars that offer everything from groceries to cars. They can also buy pharmaceuticals — even the raw ingredients to illegally make drugs themselves.
Many start on forums devoted to patients and their loved ones when they can’t get answers anymore. The two most popular are “I Want Miracles,” which is dedicated to helping people with lung cancer, and “Dances With Cancer.” The forums combined have just over 440,000 members.
“This is the current state of health care in China,” said Chen Yun, who runs “I Want Miracles.” “Every doctor is just too busy, and there’s no way that they can explain many things to you clearly. But if you want to figure it out, you just have to learn by yourself.”
Then there are the posts on how to make drugs yourself. They direct athome drugmakers to buy the ingredients online, on marketplaces run by Alibaba Group, the e- commerce giant, and elsewhere. Dozens of suppliers offer free samples and promise fast delivery.
“Our products’ quality better than the standard quality in the market,” advertised Xian Health Biochem Technology, which was selling the ingredients for vandetanib, a cancer drug.
Sellers mail the ingredients out in envelopes or, for those with bigger orders, in drums.
Alibaba abides by laws and has “rules and systems in place” that help it identify listings that infringe on its policies, a spokeswoman said.
Desperate to help his mother, Mr. Zhang did a basic search: “What to do after patient develops drug resis- tance on Iressa?” He happened upon “Dances With Cancer” and a longtime cancer patient called “Bean Spirit,” who wrote a manual on how to make drugs at home.
Mr. Zhang, who had worked at a pharmaceutical factory but was not involved in making drugs, made his own version. He bought the ingredients for AstraZeneca’s Tagrisso, a lung cancer drug. He spent about $150 for a month’s worth of ingredients, capsules and an electronic scale.
When the drugs stopped working for his mother, Mr. Zhang made others. He worried that he would not be able to find the ingredients each time a drug stopped working.
“You don’t know whether the thing that’s ahead of you is a pit or a road,” he said, wiping tears off his face. “But you must go forward. You can’t stop.”
In July 2017, Mr. Zhang started making WZ4002, yet another drug. It was discovered in 2005 by the Dana-Farber Cancer Institute in Boston but has not been approved by regulators in the United States or China.
His mother told Mr. Zhang that it caused dizzy spells. Earlier, she had come down with a severe bout of diarrhea after taking one of the homemade drugs and had to be hospitalized for a month.
Both mother and son shrugged off any side effects.
“How do you feel after taking the new medicine?” Mr. Zhang asked his mother.
“Well, I think it feels a little bit less painful now,” Ms. Yao said. “Less painful?” he asked. “Remember, I told you that sometimes this part and this and this part hurt,” she told him. “Now these parts are less painful.”
Ms. Yao died in October 2017, two years after Mr. Zhang started making drugs for her. The cause of death was gastrointestinal bleeding and acute bronchitis.
Mr. Zhang said it was unclear whether the drugs that he had made were the cause.