Out of a desperation born of necessity, ordinary Chinese are buying drug ingredients online and making them up at home, reports The New York Times. For some , this is the only solution when they require expensive drugs that China’s ambitious but troubled health care system cannot provide.
Zhang Zhejun used a fat plastic straw to gently tap the pale yellow pharmaceutical powder onto a piece of silver foil that lay on an electronic scale. He made sure the amount was just right before he poured it into a clear capsule. When you’re making cancer drugs at home, the measurements must be precise.
Zhang has no medical experience and no background in making drugs professionally. He did this out of desperation – his mother suffered from lung cancer and required expensive drugs that China’s ambitious but troubled health care system couldn’t provide.
The report says he was aware of the risks. The drug he was making hadn’t been approved by regulators in China or the US. Zhang had bought the raw ingredients online, but he wasn’t sure from whom, or whether they were even real. “We’re not picky. We don’t have the right to choose,” he said. “You just hope the sellers have a conscience.”
The report says it’s a desperation born out of necessity. China’s ageing population is increasingly stricken with deadly diseases like cancer and diabetes, but many can’t find or afford drugs. The country’s rudimentary insurance system doesn’t begin to cover the ever-rising prices of treatments and drugs. Coverage also depends on where somebody lives, and some rural residents still lack access to certain drugs. Despite a costly new safety net from the government, the report says, according to official figures, illness remains the leading reason Chinese families fall below the poverty line.
Many of China’s problems are self-inflicted. The report says major bureaucratic hurdles keep lifesaving drugs out of the reach of millions who need them. Drug approvals, while accelerating, remain dauntingly backlogged. Until October last year, pharmaceuticals approved in the US and Europe had to go through an extensive vetting process in China. Even now, foreign-made drugs have to clear another hurdle before insurance companies will pay for them.
To stay alive, many sick people in China – and the people who love them – break the law. Online marketplaces are filled with illegal pharmaceuticals. Dealers run underground pharmacies. In some cases, cancer patients and their families make the drugs themselves, finding the ingredients and the instructions online.
The report says China’s challenges are playing out globally. Many of the same problems have pit world leaders, including President Trump, against big pharmaceutical companies. The companies complain about regulatory hurdles and approval delays. High drug prices have roiled trade talks. Lower 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, the report says, the public has become increasingly concerned about access to drugs, putting pressure on the leadership. This summer’s box-office hit “Dying to Survive” was based on the real-life story of a Chinese leukaemia patient who ran a buyers’ club, smuggling generic drugs from India to save himself and others. It was almost universally 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 report says the Communist Party’s grip on power depends heavily on providing improved opportunities for the public, including better health care. “I don’t know whether they can do that,” said Zhou Jun, the executive director of the US-China Healthcare Cooperation Programme in Beijing, a group that fosters closer working relations between the countries. “It’s going to be a challenge.” (Zhou died of cancer several months after speaking to The New York Times.)
The report says last year, police raided Hong Ruping’s modest apartment in southwestern China. Under a television, they found what they were looking for: medicine to treat chronic kidney disease. 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.
The report says after the raid, Hong continued to receive drugs in monthly packages – and they weren’t all for him. 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 Hong to stay alive.
“I have this disease, and if they want to convict me, there’s nothing I can do,” 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 report says. Patients must pay about 30% of costs out of pocket, compared with an average of about 10% in the US. Many drugs aren’t covered. The paltry coverage exposes hundreds of millions of Chinese to sharply rising costs. In the first three quarters of last year, China’s health care expenditure per capita rose 13.2%, compared with a 9.1% increase in disposable income per capita, according to government data. That leads many Chinese to smuggling, especially from India, where prices of many drugs are capped. In China, the drug that Hong needed cost just over $4,200 a year, 10 times the price in India.
The report says some health experts are torn about encouraging the use of drugs that aren’t approved. “I find it hard to give a one-size-fits-all view on whether they should or shouldn’t do it,” said Gordon Liu, the director of Peking University’s China Centre for Health Economic Research and an adviser to the government. “Some generics from India are likely to offer newer treatments than the existing medicines in the mainland,” Liu said. He added: “You’re acquiring drugs through informal channels. Not only are you taking on economic risks, but also the uncertainty of the technology.”
Dr Shen Lin, director of digestive oncology at the Peking University Cancer Hospital, said several of her patients on long-term medication couldn’t afford the 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.”
To survive, many Chinese need foreign-made drugs. But they can be costly, when they are available at all. First, drugs need to be approved. From 2001 to 2016, China approved just over 100 new drugs, about one-third the number in developed countries, according to the China Food and Drug Administration. 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, along with other steps to speed up reviews. 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, less costly pharmaceuticals to combat life-threatening diseases.
Still, the report says, the agency remains short staffed. China had roughly 600 reviewers at the end of 2016, compared with thousands in the US.
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, even if they have government coverage. A petite former elementary school teacher with blunt bangs, Yao had lung cancer that didn’t respond to surgery or a form of treatment called biotherapy. She was 68 in 2011, when the cancer was first 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 that keeps cancer cells from multiplying. 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. The report says Yao was covered by China’s “rural cooperative medical scheme,” which provides only modest benefits compared with the insurance for urban residents. She received a monthly pension of $460. Her son said the rural scheme at that time did not pay for imported drugs.
Zhang vowed to save her. He quit a decent-paying job and moved in with his parents in a barely furnished apartment in Jinzhou, a largely industrial and heavily polluted city. Zhang discovered that India made a cheaper, generic version of Iressa. It worked for a while. But Yao developed a resistance to it after about nine months. Zhang needed alternatives. He went online.
The report says China in recent years has become the world’s largest home of internet users. Many Chinese now shop almost exclusively in internet bazaars that offer everything from groceries and hot meals to jewellery and cars. They can also buy pharmaceuticals – even the raw ingredients to illegally make drugs themselves.
Desperate to help his mother, Zhang did a basic search: “What to do after patient develops drug resistance on Iressa?” He happened upon “Dances With Cancer” and an active participant and a long-time cancer patient called “Bean Spirit,” who wrote a manual on how to make drugs at home.
The report says Zhang, who previously worked at a pharmaceutical factory but was not involved in making drugs, started on his own version. He bought the ingredients for AstraZeneca’s Tagrisso, a lung cancer drug. He spent just over $150 for a month’s worth of ingredients, plastic capsules and an electronic scale. “The raw ingredients are worth more than the price of gold,” he said.
When the drugs stopped working for his mother, Zhang began making others. He started having sleepless nights, 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, 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 US or China. His mother told Zhang that it caused dizzy spells. Earlier, she had come down with a severe bout of diarrhoea after taking one of the homemade drugs and had to be hospitalized for a month. Both mother and son shrugged off any side effects.
The report says Yao died in October 2017, two years after Zhang started making drugs for her. The cause of death was gastrointestinal bleeding and acute bronchitis. Zhang said it was unclear whether the drugs that he had made were the cause.The New York Times report