Trying to live on DIY cancer drugs
JINZHOU, CHINA— 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 making cancer drugs at home, the measurements must be precise.
Zhang had 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.
He was aware of the risks. The drug he was making had not been approved by regulators in China or the United States. Zhang had bought the raw ingredients online, but he was not 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.”
It is a desperation born of necessity. China’s aging population is increasingly stricken with deadly diseases like cancer and diabetes, but many cannot find or afford drugs.
The country’s rudimentary insurance system does not begin to cover the everrising prices of treatments and drugs. Coverage also depends on where somebody lives, and some rural residents still lack access to certain drugs.
Despite a new safety net from the government, illness remains the leading reason Chinese families fall below the poverty line, according to official figures.
Many of China’s problems are self-inflicted. Major bureaucratic hurdles keep life-saving 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 United States 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.
In China, 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 story of a Chinese leukemia patient who ran a buyers’ club, smuggling generic drugs from India to save himself and others.
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.
Cost of living
Last year, police raided Hong Ruping’s modest apartment in southwestern Chi- na. 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 they were not approved by the country’s regulators. Then, they let him go.
Some health experts are torn about encouraging the use of drugs that are not approved. “I find it hard to give a onesize-fits-all view on whether they should or shouldn’t do it,” said Gordon Liu, director of Peking University’s China Center 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 could not afford the drugs anymore, and had asked whether they could use generics from India. She has tried to dissuade them, saying she could not vouch for drugs from unofficial sources.
Still, she said, “if they continue on their path, they would go bankrupt.” Making the list To survive, many Chinese need foreignmade 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, 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.
Still, the agency remains short staffed. China had roughly 600 reviewers at the end of 2016, compared with thousands in the United States.
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.
When the drugs do arrive, many Chinese patients, like Yao Xianghua, cannot afford them, even if they have government coverage.
A petite former elementary school teacher with blunt bangs, Yao had lung cancer that did not 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.
“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. Yao was covered by China’s “rural co-operative 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.
Do-it-yourself medication
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 jewelry and 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 cannot 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.”
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 longtime cancer patient called “Bean Spirit,” who wrote a manual on how to make drugs at home.
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.
When the drugs stopped working for his mother, Zhang began making others.
“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.”
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.