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. Last Updated: 07/27/2016

Is Severe Acute Reluctance to Speak Curable?

Forty-four years ago, China's respected defense minister, Peng Dehuai, tried to bring to the attention of other senior leaders the fact that millions of people around the country were starving to death as a result of misguided economic policies. But Chinese Communist Party Chairman Mao Zedong did not want to hear that his policies were a failure. So he and his followers branded Peng an "anti-Party element," and the blunt, able Peng was put under house arrest in a village outside Beijing. During the Cultural Revolution he was jailed, tortured and killed.

At first glance, it may appear that little has changed in China. Like word of the famine, honest reporting of data about severe acute respiratory syndrome, or SARS, the latest threat to China's economic plans, got lost somewhere among the doctors in Guangdong province, local and provincial leaders, Beijing officials and the public. None of the doctors or officials possessed the stature of the revolutionary war veteran Peng, and they must have feared the consequences of raising an alarm on the eve of a key National People's Congress and change in leadership. When an honest and outraged military physician in Beijing earlier this month broke ranks and exposed the severity of Beijing's SARS epidemic, he was placed under surveillance by the public security bureau. China has rarely rewarded individuals who have sounded discordant notes or uncovered unpleasant facts.

While the SARS crisis shows that, in many ways, the China of 2003 resembles the China of 1959, it also shows how much China has changed. Its system of governance still has no mechanisms to ensure the accountability of officials or to bring problems to light. It possesses no system of checks and balances, no independent watchdog agencies, no truly free press. It lacks transparency and treats information as secret that would, in the West, be considered the stuff of newspaper reports, regulatory disclosure and congressional hearings. Yet whereas Mao's misguided Great Leap Forward lasted three years and resulted in the death of at least 30 million people before it was abandoned, the silence on SARS cases lasted just six months with a death toll that numbered only in the low hundreds before the Chinese leadership took steps to change the way it was dealing with the problem.

What has changed? The Chinese government is finally recognizing that local events, even in China, can have global impact and that global information can have local impact. In the 23 years since I first went to China, economic reforms have revolutionized the country. China today is part of the modern, globalized world. Large numbers of its people, once cut off, have contact with foreigners on a regular basis, either in person or via the Internet. Chinese people now travel within their country or abroad and in the process carry new ideas and uncensored information, as well as diseases such as AIDS and SARS, back and forth. That exposure has created a new sort of pressure on China's leaders to be responsive both to their own people's expectations and to the broader world community.

Yet even as China's new leaders begin to do the right things to contain the spread of SARS, they will be hampered by a dysfunctional health system and people's lack of trust. These are the same problems I have seen in my work in China on HIV/AIDS, another area where the medical and political system has failed to respond effectively.

The past 20 years have witnessed the dismantling of China's system of socialized medicine. The central government has handed more and more of the fiscal responsibility for health care to local and provincial governments, and much of the system, like the rest of the economy, has been privatized.

While China's urban residents have reasonable access to good-quality health care, more than 100 million rural migrants living in the cities are not covered by health insurance and cannot afford to seek such care. In rural areas, the breakup of the commune system in the late 1970s hurt funding for clinics. Economic development goals have trumped investment in health care in most places. Communities have chosen to invest in roads rather than disease surveillance, the training of health workers or the building of better health centers.

The World Health Organization recommends that at least 4 percent or 5 percent of national GDP should be spent on health care; in China, meeting that goal is difficult. In some places it's a question of priorities; some places just don't have enough money.

Last August, I visited one part of the Chinese medical patchwork: a typical clinic in a rural area of Guizhou province, a four-hour drive from the provincial capital on a new highway. It was a two-room brick and mud structure, decorated with a couple of health ministry charts that explained drug interactions and essential medicines for specific diseases. The clinic's autoclave for sterilizing medical equipment was broken.

The doctor lived in the back room and saw patients in the front room. A former "barefoot doctor" who later received only three months of additional training, he stood behind a counter dispensing medicine, his main source of income. The local government provides about two-thirds of his salary and he earns the rest through fees and selling medicine, much of which could only be obtained by prescription in this country. For local residents who lack the money to go to a more advanced clinic in the market town nearby, this is their main health care facility. What will that doctor do for them if they start turning up with SARS, for which no medication has yet proven effective?

The devolution of financial responsibility, making every tub rest on its own bottom, has not only weakened access to quality medical care, it has weakened the authority of the central government. Defiance of central government guidelines carries no financial consequences. The Health Ministry, already a weak player on the national stage, sets guidelines but exerts little real control over the decision-making that now rests with provincial and local governments.

One side effect of this is the lack of accountability of health officials. In Henan province, as a result of a failure to follow sterile procedures, the HIV virus was given to hundreds of thousands of unsuspecting blood donors, many of them poor people trying to make money by selling their blood. Even after the problem became clear to local and provincial officials, they concealed the scandal for years and blocked others from engaging in reporting, research or prevention. The health minister and the mayor of Beijing have already lost their jobs for concealing cases of SARS from a WHO team, but the powerful Henan officials who hid the AIDS epidemic remain in office.

Secrecy is an obstacle to dealing with health problems, and China's government hides all sorts of information. In Henan, thousands of citizens began to die of AIDS without knowing what illness they had. In their ignorance, many infected friends and family members. When a prominent AIDS activist, Wan Yanhai, revealed a government report that proved Henan officials had long known about the extent of HIV infections, he was jailed for revealing state secrets.

Similar secrecy has afflicted the SARS response. The Chinese media were instructed to play down the issue, ostensibly to prevent public panic, maintain "social stability," and avoid scaring away business and tourism. Yet in an information age, it has become more difficult to keep such things quiet, even in China. In Beijing, an incensed doctor spilled the beans on China's hidden SARS cases. In the Henan AIDS epidemic, an Internet newsletter posted the story of an elderly retired doctor, Gao Yaojie, who was treating AIDS patients.

These whistleblowers should be treated as heroes, latter-day versions of the old model workers once extolled for their socialist spirit. Instead, the brave whistleblowers are rewarded with suspicion and often surveillance. In China's ailing governance system, these heroes remain the only mechanism for forcing accountability because the system lacks routine channels -- such as a free press -- for bringing problems into the open.

Even today, in most of rural China, there is little way to get accurate information on diseases such as AIDS. But the public increasingly believes it has the right to know about health risks and other topics. Even as it tries to come clean about the number of SARS cases, China's ruling party, which has long regarded information as propaganda, cannot convince people it is telling the whole truth.

It has asked people in big cities to stay put to reduce the risk of further infection in remote provinces, but thousands and thousands of panicked residents have disregarded that advice and jammed Beijing's West Railway Station to flee town, even as appropriate infection control measures are being put in place in the capital.

What began as a localized epidemic of atypical pneumonia late last year in one of China's 30 provinces has now spread around the world thanks to China's outdated system of governance. Diseases, especially infectious ones, do not respect national borders. A country that sends hundreds of thousands of students abroad, lures tens of billions of dollars in foreign investment and ships hundreds of billions of dollars' worth of products abroad must meet a higher standard of international cooperation and transparency. China's new leaders appear to recognize this. No one will invest in a place that covers up real threats to health, growth and profits.

A country like China also owes more to its own citizens, not only the SARS victims but the 1 million mostly poor, mostly rural people infected with HIV/AIDS and the 1.3 billion other Chinese who deserve to know about issues that affect their welfare. As China's rulers mobilize their resources to fight SARS, they should also take steps to improve the health of their entire system.

Joan Kaufman is a lecturer in social medicine at Harvard Medical School, director of the AIDS Public Policy Project at Harvard's John F. Kennedy School of Government and was based in China for 10 of the past 23 years. She contributed this comment to The Washington Post.