Survivors say SARS lesson mustn't be forgotten
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E-mail Xinhua, April 12, 2013
For 10 years, Jing Deshen and his wife kept silent about their brush with SARS.
The very name of the disease was taboo in the family and little is known about what the couple went through in isolation in their Beijing hospital ward.
Having survived the deadly pandemic in 2003, Jing retreated from all social life. He is afraid of the color white due to his time in the hospital and prefers to stay at home listening to the radio and watching TV, hoping the sound can dispel the haunting memories from his mind.
But with China marking the 10th anniversary of its war on Severe Acute Respiratory Syndrome (SARS), the 57-year-old Beijing resident has decided to break his silence.
"I want to remind the public never to forget the lessons learned from SARS," Jing said.
Jing is among some 2,280 people in Beijing who survived the deadly respiratory disease 10 years ago.
In 2003, the pandemic infected over 5,000 people on the Chinese mainland, half of whom were in Beijing. A total of 348 people died.
Many of the survivors are now disabled by bone necrosis and pulmonary fibrosis resulting from the infection, as well as the hormone therapy that proved to be the only effective cure at the time.
Their past decade has been marked by pain, hardship and solitude. Many are steeped in depression.
Jing and his wife were infected by SARS after visiting a hospital in Beijing to treat Jing's relapsing bronchitis on April 12, 2003, not knowing the hospital had been contaminated by SARS.
Though rumors about a "weird disease" originating in the southern province of Guangdong had gone around Beijing, the city government had denied the occurrence of a large-scale breakout.
"In retrospect, I believe the hospital was responsible -- I was told to stay in a ward for suspected SARS patients without any protection or warning," Jing said. "The doctors insisted I should call up a family member to keep me company. That was how my wife became infected, too."
At the onset of the SARS outbreak, hospitals in Beijing had neither the experience nor adequate quarantine facilities necessary for handling such a crisis, which led to a massive number of infections among patients and medical workers.
The turning point was April 20, when former Health Minister Zhang Wenkang and Beijing mayor Meng Xuenong were removed from their posts. At the same time, Beijing began publishing daily reports on the epidemic and beefed up medical efforts, including building more isolated wards for SARS patients.
SEEKING AID
Jing said he never complained of his infection in hospital. "It was the first time for China to cope with such a public health crisis, and no one knew what measures should be taken to avoid infection.
The couple were extremely grateful to the hospital and government for their survival. But gratitude soon gave way to bitterness.
Shortly after his recovery, Jing lost his job at a construction firm where he was a project manager. The couple were both diagnosed with bone necrosis, and mounting medical expenses quickly dragged the once-wealthy family into financial plight.
In 2005, Beijing authorities began to provide free treatment for SARS sequelae.
In 2008, the government granted an annual subsidy of 4,000 yuan (646 U.S. dollars) for each patient, with 8,000 yuan for those without a job.
But the aid was inadequate for most survivors, whose injured joints and poor health deprived them of their ability to make a living, said Bian Xiaochun, a SARS survivor and senior engineer.
"We're working to raise more aid funds for these ailing survivors, particularly those without a job," said Bian.
According to a survey Bian and other SARS survivors conducted in 2006, 35 of the 110 SARS survivors they followed in Beijing were jobless, while 60 others were either retired or too sick to keep working. Their average annual income was only 9,000 yuan. Beijinger's average per capita wage for that year was 36,097 yuan.
The plight of the SARS survivors has aroused widespread attention from the public in recent years and some have lent a helping hand, said Li Xuemei, secretary-general with Beijing's welfare fund for the disabled people.
"Last year, for example, a Chinese pharmaceutical company reached a deal with us," she said. "They agree to donate cash on monthly basis to set up a special fund for SARS sequelae patients."
According to Beijing's federation for the disabled, more than 150 SARS survivors suffer serious sequelae, of whom 130 were disabled, said Guan Wei, a federation official in charge of petitions. "They are aged from 30 to nearly 70."
The figure did not include medical workers who contracted SARS on the job and whose treatment was covered by their employers.
"SARS is highly contagious, so we often saw an entire extended family fall ill. In those cases family members could not help each other and depended heavily on social aid," said Bian.
Bian is probably the luckiest survivor. He sought treatment when he first felt pains in October 2003. Seven years of traditional herbal therapy effectively eased his pains and spared him of surgery.
But not everyone is as lucky. Jing is crippled by bone necrosis on the thighs and legs and needs several surgeries to replace the injured bones.
Such replacement surgeries for SARS survivors were included in a government-sponsored free medication package beginning in 2005. The package also includes at least five free drugs for their bone and lung diseases.
But for most people, the pain is hard to rid.
Fang Bo, 61, had bone replacement surgeries on both thighs in 2005 and 2006, but the material used would last for 15 years at most. Besides, he was diagnosed of more necrosis on his shoulders, knees, elbows and wrists. With hypertension, depression and at least 10 other diseases, Fang doubted if he could stand the surgeries one by one.
Dream of a safer world
Experts said the SARS breakout in 2003 greatly improved China's medical system, resulting in more transparent handling of the country's first human infections of the H7N9 avian flu.
But many mysteries surrounding SARS, including its true host, remain unclear. It is not known why the disease suddenly stopped infecting people in June 2003.
"Now that 10 years have gone by, we still don't know much about the virus -- where did it come from? Why did it suddenly disappear? And more importantly, what will happen if it strikes again?" Jing said.
He said it was essential to reflect on the SARS outbreak in order to draw enough experience to tackle possible future large-scale epidemics.
"This is a lesson we learned in a very hard way, but many are still not vigilant. For one thing, many people don't know what to do in the event of an epidemic. Some tend to overreact, while others have no vigilance at all," Bian said.
Jing hopes his personal struggle with SARS can leave a legacy for the future. He and many other survivors have donated blood serum for making SARS vaccines, and some have agreed to give their bodies to medical researchers after death.
Jing said he felt a stronger sense of urgency after his granddaughter was born last year. Fearing he might fall and harm the baby, he could only hug the girl while sitting.
"When I saw her, I knew life had to go on. I hope she will grow up in a safer environment where people know how to tackle public health crises properly," he said.
The public must not forget the SARS scare, he said. "Otherwise, all our suffering will be in vain."
After reports of the H7N9 flu dominated newspapers and TV in March, Jing said he conducted a test to see how seriously the outbreak was being handled.
"On March 30, when rumors about the flu had already triggered public concerns, I took my pet birds onto a train to Baoding, my birthplace in Hebei Province."
A bird cage in hand, Jing waddled all the way onto the train without being stopped or questioned. "On April 4, I took a train back to Beijing, again without attracting any attention."
"I was ready to open the cage and set the birds free."
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