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 Yin, like many families in China, turned to the increasingly
popular, unregulated market of online pharmacies, agents and peer
groups for drugs.
She bought a generic version of Iressa, not approved for use in
China, directly from a manufacturer in India.
"With this sort of misfortune, it's hard to put into words the
financial pressure you feel," Yin told Reuters.
Of 30 cancer patients interviewed by Reuters over the past year, two
thirds took routes similar to Yin's, pushed by China's high drug
prices and a lack of access to newer drugs. The patients were aged
between 32 and 81, had varying income levels and suffered from a
variety of cancers.
There is no official data on how many cancer patients in China turn
to unregulated channels, but research indicates an increase globally
in the use of gray and counterfeit markets.
Liu Xuemei, a 61-year-old carcinoma patient from Beijing, said she
went through a pharmacy agent to get a cheaper alternative to the
approved Zadaxin, while Zhao Xiaohua, who has lung cancer, said he
found a cheaper treatment through a patients group recommended by
his doctor. Patients Reuters spoke to said doctors often turn a
blind eye to them accessing drugs through the gray market, and some
actively help them do this.
Medicines bought through unofficial channels are not necessarily
harmful, and some of the Indian generics available online are
approved for use in other markets. But they can include drugs that
are ineffective or fake.
The reason patients in China turn to these unregulated channels are
largely financial.
Low average salaries, a chasm between urban and rural wealth, and
creaking state reimbursement schemes mean serious disease is among
the leading causes of poverty, creating a major social burden and
rising debt.
In Yin's case, the generic drug she bought was 13 times less
expensive than the China-approved branded Tarceva.
But Chinese also turn to unofficial channels because of bottlenecks
in China's drug approvals, which pharmaceutical executives say can
mean drugs lag markets like the United States by 5-10 years. China
requires all new drugs to be tested and approved in the country, but
has a shortage of specialists for this work.
The national drug reimbursement list, the main catalog of medicines
covered by state health insurance, is being updated for the first
time since 2009. That means even if a drug has been approved,
patients can often only access it if they pay for it themselves.
China's health ministry did not respond to Reuters' questions about
patients turning to unregulated channels to buy medicines, or the
lack of access to new drugs.
The high cost of drugs is not confined to China, and there has been
a jump globally in so-called 'buyers clubs' – informal patient
groups sourcing drugs via the grey market to help those with HIV and
hepatitis access drugs at more affordable prices.
LIMITED OPTIONS
China last year had four million new cancer cases, according to
official data, and the nation's personal healthcare bill is set to
soar almost fourfold to 12.7 trillion yuan ($1.84 trillion) by 2025,
according to Boston Consulting Group.
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For many Chinese, being left outside the health system at a time of
need is in sharp contrast to the 'iron rice bowl' concept of state
benefits and guarantees for life.
"If we can't buy the drug in China or we can't afford to buy it,
then what other options do we have?" asked Duan Guangping, a banker
in Chongqing, whose mother got lung cancer in 2011. He bought a drug
for her from Bangladesh.
China has sought to increase insurance coverage for serious
diseases, and encourage drug makers to lower their prices to gain
better market access. It has also tried to speed up the regulatory
approval process by thinning out the waiting list, forcing
manufacturers to withdraw new drugs where trial data isn't strong
enough.
But change has been slow.
"A lot of new oncology drugs were approved in the U.S. and UK, but
in China there's a 5-7 year delay," said Li Tiantian, a former
doctor and founder of medical platform DXY.com. "A lot of patients
with cancer cannot wait."
The overall 5-year survival rate for cancer in China is just over 30
percent, less than half the level in the United States, according to
Deutsche Bank.
LEGAL RISK
Turning to unofficial channels can also carry a legal risk.
Leukemia patient Lu Yong, a prominent member of a local 'buyers
club', was arrested last year and charged with selling unapproved
drugs and credit card fraud. He was later released after a public
outcry.
In 2004, after buying a generic version of Iressa from India, Lu
helped set up an online group for leukemia patients, who wanted the
same drugs he was getting at a fraction of the price of the approved
drug in China.
The generic started at around 3,000 yuan ($435) and the price slowly
dropped over the years, Lu said - to a long way below the price of
the approved drug from AstraZeneca <AZN.L>.
"There was no other option, so we took this path even though what we
were doing was against the law," Lu told Reuters before his arrest.
Lu declined to comment to Reuters after his release, but in his
earlier interview he said he never profited from the transactions
and only helped other patients to make the complicated overseas
payments. "It's because of problems with China's public health
insurance system that so many seriously ill patients aren't able to
survive," he said then.
(Reporting by Adam Jourdan and SHANGHAI newsroom; Editing by Ian
Geoghegan)
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