In the current issued of Wired, Maryn McKenna suggests that the perfect epidemiological storm may now be brewing in the Middle East. Millions of pilgrims are about to go on the move in Saudi Arabia for the annual Hajj, potentially enabling significant outward spread of the new virus known as Middle East respiratory syndrome (MERS). The conditions of the Hajj—with people packed into overcrowded spaces, their immune systems stressed by disrupted sleep patterns and exposure to multiple pathogens—would make epidemiologists quiver even without the presence of an airborne disease like MERS. But MERS is truly terrifying; its death rate stands at an astonishing 56 percent.
And the added threat to public health in this case, according to McKenna? The Saudi government’s tendency to censor news of MERS. McKenna notes that “Saudi Arabia, where the majority of cases have clustered, has been tight-lipped about the disease’s spread, responding slowly to requests for information and preventing outside researchers from publishing their findings about the syndrome.” Without prompt, accurate information-sharing about the disease’s spread, its presentation, and treatment successes and failures, physicians and public health experts may quickly find themselves stymied in attempts to contain this pathogen.
When our own nation’s Founding Fathers decided to put freedom of the press first in the Bill of Rights, odds are that they were not thinking of it as an issue of public health. But journalists’ access to and freedom to relay health information is critically important to successful management of epidemics, poisons, toxins, medications, emergency medical systems, and even day-to-day public health.
"The average American pays for the work that government agencies do, is affected by the decisions they make, and deserves to know how those decisions are arrived at."
The history of American medicine is rife with examples of journalists’ advancing the public good via access to government health workers, including access to skeptics and whistleblowers. Thousands more children might have been born with the major birth defects caused by the anti-nausea drug thalidomide if the Washington Post had not made front-page news out of the shocking findings of Dr. Frances Oldham Kelsey, a beleaguered researcher at the Food and Drug Administration (FDA) who had been charged with approving thalidomide for use in the U.S. Who knows how long the Tuskegee Syphilis Study—a federally-funded study of non-treatment of syphilis among a group of African-American men—might have gone on, had a journalist not finally sounded the alarm; the researchers running the study had simply ignored critics’ outrage, until press coverage finally made doing so impossible. And when the Reagan administration worked to limit federal health agencies’ responses to AIDS, it was progressive journalists who did the work of trying to keep the public informed about the new disease.
American health journalists are consequently worried about more than their own needs as today they find themselves pushing hard to lower substantial barriers to health information—barriers constructed by the press offices of federal, state, and local health agencies. In an editorial out last week, Rose Hoban, editor for North Carolina Health News, decried “a profound shutdown of the lines of communication” between her state’s health department and reporters. Noted Hoban, “the increasing suspicion on both sides and the frayed relationships have deeper ramifications—especially in the unfortunate event of a disease outbreak.”
Yet nationwide, reporters are increasingly finding they are prevented from speaking to health agency employees without a press office chaperone—if they are allowed to speak to them at all. Last year, in what health journalists point to as perhaps an all-time low, the U.S. Department of Health and Human Services decided to hold “public meetings” on the Affordable Care Act but specifically barred reporters.
Organizations of American health reporters are now actively struggling with this issue, working to convince agency press offices to allow greater access to government workers and documents in the name of the public good. Particularly since revelations of the FDA tracking emails of disgruntled FDA scientists, reporters also find themselves concerned with the rights of government health agency employees. At a panel hosted last month by the National Press Club, Washington-based freelance health journalist Kathryn Foxhall asked, “How can the United States prohibit people from speaking without reporting to the authorities?”
Felice J. Freyer and Irene M. Wielawski, co-chairs of the Right to Know Committee of the Association of Health Care Journalists, noted in an email interview that the move to requiring media-office clearance “is not unique to the federal government; it’s near-universal in state and local agencies as well as the private sector.” To be fair, this blocking technique is designed not only to keep an organization “on message,” but also to prevent wrong or incomplete information from leaking out—something that can also be dangerous in matters of public health.
Nevertheless, like McKenna, Freyer and Wielawski insist that, “Communication is essential to public health.” They point out that “the average American pays for the work that government agencies do, is affected by the decisions they make, and deserves to know how those decisions are arrived at. This is especially important with public health agencies, whose actions determine which drugs people take, whether their food supply is safe, how much their doctors are paid, the medical quality standards that health care providers must adhere to, and a host of other issues with direct impact on day-to-day life.”
With the tremendous economic pressures on journalistic outlets created by the Internet, American health journalism—and thus American public health—faces dangers to its well-being on multiple fronts. Speaking at the National Press Club meeting last month, Linda Peterson, the freedom of information chairman for the Society of Professional Journalism, observed, “there aren’t that many good reporters left, and the ones coming out of school are a fearful generation.”
But, she insisted, she and her colleagues would press on. “This is the United States of America,” she told those gathered. “Our mandate is to report the truth, not what the [press information officer] tells us is the truth.... The public of the United States of America has a right to this information.” Our health may well depend on whether these journalists succeed.