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Sick & tired

Ten years on from the outbreak that killed hundreds, many Beijingers chronically affected by Sars await meaningful government support. Xu Donghuan reports

 

It is the coldest day since the start of the winter; an overnight weather front from Siberia has brought the temperature in the Chinese capital to minus-seven degrees Celsius. Shortly before 1pm, 54-year-old Yang Zhixia and her sister-in-law, Li Guiju, arrive at the heavily guarded petition office in Beijing, in an alley next to Tiananmen Square. The pair are among dozens of survivors of the 2003 severe acute respiratory syndrome (Sars) outbreak in Beijing who have come here every month for nine years in an effort to persuade the government to hear their cases.

"Four members of my family died during the Sars outbreak as a result of the government's cover-up," Yang says. "We hope the authorities will take responsibility and offer the long-delayed death compensation and relief payments to surviving family members."

The two sit down at the end of a long row of plastic seats; Li, who is the same age as Yang, places her walking stick by her side. Both of them suffer from multiple health problems attributed to Sars; Li, who has osteonecrosis, has been using a walking stick for a few years. Osteonecrosis is a form of bone degeneration caused by poor blood supply to the joints, most commonly the hips and shoulders, but also knees, elbows, wrists and ankles. It is widely believed osteonecrosis among Sars survivors is associated with the high doses of steroid therapy they received as treatment.

It has been 10 years since Sars erupted in Beijing - the first known case in the capital was that of a woman in her 20s who was admitted to No302 Military Hospital on March 6, 2003 - infecting thousands of people and killing hundreds nationwide. Schools were closed, businesses came to a standstill and the bustling city was turned into a ghost town almost overnight. For most of the capital's population, memories of that time are becoming hazy, but for many of those who have been living with the after-effects - and Beijing has a disproportionately high number - it is a trauma they will probably never leave behind.

"How can you expect us to let go of the frustration inside when we have had such a huge blow in our lives and the government has been reluctant to provide us with the necessary support?" Yang asks.

According to the World Health Organisation, from November 16, 2002, when the first known case of atypical pneumonia occurred in Foshan, Guangdong province, to June 3 of the following year, when the last case was reported, 5,327 people in the mainland were infected, 349 of them dying as a result. In Hong Kong, 1,755 cases were reported and 299 people died. Worldwide, there were a total of 8,096 cases, resulting in 774 deaths.

In a matter of two weeks, between late April and early May 2003, Yang lost her father, mother, husband and brother; five other members of the family, including herself, were struck down by Sars and now suffer from chronic health problems.

"If the government had been open about the information at the start, my mum would never have accompanied my hemiplegic dad to the already infected hospital for his regular treatment, and brought home the virus," she says. "Before Sars, we were a big happy family and now we are the most unfortunate family here."

In the courtyard where Yang's parents lived, in downtown Beijing, three neighbours and two visiting nurses were also infected.

She insists that her parents must have caught the virus in the first week of April, at Dongzhimen Hospital, where a Sars patient died on March 20. According to a report in Caijing Magazine, shortly after that patient was admitted, on March 15, a doctor in the emergency ward suspected he had been infected by what was still known as the "mystery virus" ravaging Guangdong and Hong Kong. After the doctor learnt that the patient had just returned from Hong Kong, where the latter had visited his brother at Sha Tin's Prince of Wales Hospital, he notified the Chinese Centre for Disease Control and Prevention in Beijing of his concern, but was told to keep quiet.

Soon nurses and doctors who looked after the patient began to run high fevers - an early symptom of Sars. Eventually the disease took hold at the hospital, infecting 55 people, including 34 staff.

Only on April 20 did Beijing authorities come clean about the scale of the problem, announcing the number of Sars cases in the city was 339, a sharp increase from the 37 previously reported. On the same day, Beijing mayor Meng Xuenong and minister of health Zhang Wenkang were removed from their posts.

Yang was discharged in June 2003, having been in hospital for 57 days. But she hadn't fully recovered from Sars, physically or mentally.

"I blamed myself for the deaths in the family and felt that I was the curse," she recalls. She locked herself in her home for days on end, refusing to talk to anyone. But life had to go on, if not for herself then for her son, who had just started college. She needed to be there to see him graduate, find a job and get married.

Yet she had little idea of what awaited her; in January 2004, an MRI scan showed that she was suffering from osteonecrosis on both sides of her hip. In that March, Yang enrolled at a renowned bone-treatment clinic, but had to discontinue the treatment after 40 days: she was on sick leave from work on a monthly income of 580 yuan and the medical bills would have quickly depleted her savings.

It was at the clinic, however, that Yang met other former Sars patients who became fellow petitioners.

"Our original intention was to go to the government to ask for financial assistance to cover the medical costs," says 60-year-old Fang Bo, who has late-stage osteonecrosis on both hip and shoulder joints. "But gradually, we came to see that it was the government which had mishandled the Sars outbreak and facilitated the spread. We have the right to demand a solution from them."

Fang lost his wife and sister-in-law to Sars; seven other family members were infected and survived, but with long-term health effects.

"Our hope is the [city] government will set up a Sars trust fund similar to that set up by the Hong Kong government and provide relief payments to the surviving family," he adds.

Beijing authorities claim Sars was not classified as an infectious disease when it struck, so the government has no obligation to those who survived it, even though, on April 8, 2003, the Ministry of Health issued a circular describing Sars as such a disease.

 

IN AUGUST, ANOTHER MRI scan showed that Yang had osteonecrosis in both her shoulders.

"Before that, I still held out hope that things could get better. Then, when both my arms ached so badly I could not do any housework, I felt like a burden to the family and wished to end my life," she says.

In December 2004, Yang discovered she had high cholesterol, the other known side effect of long-term steroid use. Then her blood sugar readings rocketed; her heart and liver were also compromised.

"I have, altogether, 10 health dysfunctions," she says, holding up all her fingers and thumbs, "plus serious depression." Yang had to retire from her job as an office worker on a 1,000-yuan monthly pension.

If the capital's health authorities had been slow in reporting Sars cases, they redeemed themselves to a certain degree by quickly implementing post-Sars research and care programmes, according to Chen Weiheng, a frontline doctor during the outbreak.

In August 2003, shortly after Sars had left the city, a state-funded hi-tech development project, known as 863 Programme, approved research grants for several hospitals in Beijing. Chen's Wangjing Hospital team received 500,000 yuan.

In early 2004, the Beijing Municipal Health Bureau began a citywide screening of all Sars survivors for long-term health effects. "Beijing was the only city to launch city-wide screening in the mainland," Chen says.

In March, the Ministry of Health assigned a team of specialists, including Chen, to take care of post-Sars patients.

Three hundred Sars survivors, including 150 doctors and nurses, are on the list of people suffering from severe after-effects. The medical personnel were the first to be given treatment, paid for by the hospitals that employed them. In July 2005, non-medical post-Sars patients such as Yang were given free treatment - for osteonecrosis, pulmonary fibrosis and psychological problems - and their first annual health check-ups. Pulmonary fibrosis occurs when lung tissue becomes severely inflamed and, as a result, scarred. As the condition progresses, patients become increasingly short of breath. Yang is among dozens of those on the list who suffer from all three health problems.

In 2007, Wangjing Hospital, on the northern outskirts of Beijing, opened a clinic for non-medical Sars survivors. Chen, who is leading the clinic, devotes one afternoon a week to post-Sars patients and now has about 80 from the list who come to see him for regular consultations.

There are, however, survivors, including a nephew of Yang, who suffer from long-term effects attributed to Sars but do not meet the criteria for free medical care; and others who have asked for their names to not appear on the list, for fear of discrimination at their places of work.

 

BEIJING HAS OFFICIALLY recognised its still-suffering Sars victims, then - or, at least, some of them - but the question remains: why are there so many; especially when compared with Guangdong, from where the coronavirus emerged?

"In Guangdong province, Sars broke out gradually and over a course of several months, whereas in Beijing it was a sudden eruption at the end of April," Chen says, in his small office at the in-patients department of Wangjing Hospital. "Everybody was taken aback by the chaotic situation and it followed that decisions made under those circumstances could not be as well thought-out as in normal times."

As a bone surgeon with many years of clinical experience, Chen raised his concerns with the health authorities about the overuse of steroids in the treatment for Sars.

"Saving the lives of the patients was the top priority at that time and my call just went unanswered," he says.

Exactly what quantities of steroids were administered to the patients remains a mystery; even today, survivors and the doctors who look after them have no access to their medical files from that time.

Chen did, however, manage to see the files of 86 Sars survivors shortly after the outbreak, when, for research purposes, they were still open to medical staff. Those files showed that the daily dose of steroids given to a Sars patient in Beijing could have been as high as 1,200mg, and most patients were on high doses of steroids for a month. The result was that 46 of those 86 survivors (just over 53 per cent) developed osteonecrosis.

Only 12 (or 5 per cent) of the 254 Sars patients who received treatment at the Prince of Wales Hospital, which bore the brunt of the epidemic in Hong Kong, went on to show any evidence of osteonecrosis.

"This is a low rate," says Dr David Hui Shu-cheong, director of the Stanley Ho Centre for Emerging Infectious Diseases at Chinese University and one of the doctors handling the Sars cases in 2003. "That's because we only used steroids in the second week of the illness, when our patients deteriorated, and we were using very small doses. By small dose, I mean 250mg of steroids per day."

According to Hui, during the Sars outbreak 40 per cent of the staff in his department were infected and some of them, after they had recovered, were willing to donate their blood, which was full of antibodies, to other patients. That helped to reduce the need for steroids.

In early 2003, a respiratory specialist from Guangdong visited Hong Kong to share the benefits of his experience with the disease. Dr Zhong Nanshan's advice that steroids should only be used when patients had deteriorated, often in the second week of the illness, was taken seriously at the Prince of Wales Hospital.

"We also studied Zhong's suggestion," says Chen. "But when the disease broke out so fast in Beijing, where there were 100 new cases every day and many patients came in with a high fever and breathing difficulties, there was no time to properly digest the situation."

To quickly get the virus under control, doctors prescribed high doses of steroids, which "are like a double-edged sword", says Chen. "While they can save lives, they can also produce serious side effects."

 

IN THE SPRING OF 2008, in the weeks leading up to the Beijing Olympics and probably in an attempt to quell potential public disturbances before the Games, Beijing authorities finally sat down with the post-Sars patients. They agreed to reimburse all the medical costs the patients had incurred thus far and offered an annual living allowance - 4,000 yuan for those who were still employed, 8,000 yuan for the unemployed. That autumn, Yang and her fellow patients received the first payment from the government.

"But that amount of money does little to ease our worries when one day osteonecrosis will render us bedridden, and we'll have no one to turn to for help," says Yang, who stresses the difference between a living allowance and compensation.

Chen says he understands why his post-Sars patients, especially those who have lost families, feel they have been hard done by, "but Sars is a virus that nobody had ever come across before. It took us quite a while to identify and name the virus.

"It's understandable that there was a high mortality rate among Sars patients," he maintains. "Looking back on those days, it was wrong to cover up the information, but during that time, there was hardly anything that was transparent. Now, because of the hard lessons we learnt from Sars, things are transparent and with H1N1, the new influenza virus, for example, we have an information-sharing policy."

Inside the afternoon-sun-filled petition hall, more Sars survivors arrive; many using walking sticks. Two policemen in uniforms pace the room, stealing looks at the crowd. The petitioners don't seem to care; they are happy to see one another again, catching up on news about their treatment or changes in their lives in general. Fang, the leader of the group, is pleased to tell them about a Sars trust fund that has been established at the China Disabled Persons' Federation and that he has already received the first monthly donation of 30,000 yuan from a company on their behalf.

Leaving the petition office, Yang accompanies Li to the small courtyard room in which her parents used to live and which is now inhabited by her brother and sister-in-law. Inside the simple bedroom, Yang goes to the dressing table and carefully unwraps framed photographs of her husband and, then, her parents.

"The picture of my parents was taken for the 60th anniversary of their marriage. My mum was an award-winning hair stylist. She looks beautiful and young in the photo," she pauses. "She was only 69 when she died. She should have lived much longer."

 

 

HONG KONG SUPPORT

Mutual support

The Hong Kong Sars Mutual Help Association is a charity that was set up in December 2003 for survivors of the disease and their families. It has 361 members.

According to its annual report for that year, the association received a HK$215,000 grant from the Social Welfare Department and private donations of HK$430,000 in 2011.

"What we have been doing is holding activities to help these Sars survivors," says association chairman Lam Chi-yau.

It was thought Lam, himself, had Sars. He was treated with steroids before it was confirmed he did not have the virus.

"Many of our members complain that, right after Sars, they had good government support but, after about three years, almost all the doors had been closed to them," he says. "Some members have had their medical support cut off because their doctors believe they have fully recovered from Sars, even though the patients cannot feel any improvement in their health."

"People have forgotten about us," he says. "Now the only time I hear Sars mentioned on TV is when they talk about the low housing prices during the outbreak."

In an e-mail reply, Winnie Wong, information officer for the Social Welfare Department, writes that since the outbreak of Sars, 253 ex-gratia payments have been made to families of deceased Sars patients; a total of 637 recovered Sars patients and suspected patients treated with steroids have received ex-gratia financial assistance; and 140 patients are still receiving relief money from the Trust Fund for Sars.

According to the department's official website, surviving dependent children aged below 18 at the time of death of a Sars patient can apply for an ex-gratia relief payment of HK$500,000 each; surviving dependent children aged between 18 and 21 and studying full-time at the time of death of the Sars patient can apply for HK$300,000 each. Surviving spouses can apply for HK$200,000.

 

 

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This article is now closed to comments

carol.odonnel.7
Health is very important in any community around the world. Fortunately, advanced technologies are helping to spread information that can be freely available. For instance, there is a useful website ( ESAGIL.org ) that helps people to get information about symptoms by matching them with diseases. It also helps doctors to increase the accuracy of right medical diagnosis.
jackblack323
Thanks for publishing this article on SARS and how the mainland mishandled the outbreak. Dr Zhong Nanshan, a true Chinese hero, had to travel to Hong Kong to be taken seriously with his critical advice on steroid administration.
Sadly, with the ongoing air pollution problems across China, and a flotilla of dead pigs poisoning the Huangpu River, SARS may be seen by sickened future generations as just another fatal epidemic. China has endemic health problems, from lethal milk powder to unenforced "nonsmoking" laws. It remains to be seen if the country's economic prowess of the past three decades will be undercut by the legacy of pollution and disease.
Pinkor2
Thank you for this article. We in the United States did not get information on how the SARS situation progressed. It seemed like we stopped hearing about it so we thought it was solved. Thank you for an insightful report. I hope that more health and healing can be given to the SARS patients and families.

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