Mobius syndrome

AMERICAN MEDIA INC. PHOTOGRAPHER Robert L. Stevens was feeling sick when he returned home to Palm Beach, Fla., last Oct. 1 after a trip to North Carolina. By the time his wife admitted him to Palm Beach County Hospital the next morning, Stevens was delirious with fever. The symptoms suggested anthrax poisoning, and preliminary tests could not rule it out, so blood samples were sent to the Florida state health department laboratory and to the Centers for Disease Control and Prevention (CDC) in Atlanta. Two days later, a team of CDC anthrax specialists arrived to work with the Palm Beach County health commissioner. On Oct. 4, the diagnosis was announced: Stevens had anthrax. Yet even though September 11 was fresh in the minds of Americans, the Bush administration inexplicably played down his illness. "It appears that this is just an isolated case," Health and Human Services (HHS) Secretary Tommy Thompson announced that day at a White House news conference. "There's no evidence of terrorism" Stevens died the next day.

Thompson was, of course, quickly proved wrong. The truth about Stevens's case soon emerged--four more people were killed by anthrax-laced letters sent by a bioterrorist still at large--and with it the embarrassing fact that the Bush administration had essentially botched the job of communicating with the American people. Famous for its message discipline, the White House had insisted that its HHS secretary be the lone voice on bioterrorism. Yet, from the outset, Thompson had made a host of elementary errors, suggesting, for example, that Stevens might have contracted anthrax by drinking stream water, something health experts and science reporters immediately knew to be false, given the symptoms he displayed. Such misstatements quickly eroded Thompson's credibility. But reporters had no one else to turn to. "The feds basically put a gag on the local officials and the state officials, too," recalls Sanjay Bhatt, medical reporter for The Palm Beach Po,. This gag order extended to CDC officials, as well. "All questions were directed to Atlanta or Washington, and for about a week we didn't get any response from either to our questions, which we submitted both in writing and over the phone" During the first weeks of the largest biological terror attack in U.S. history, when the need for accurate public-health information was at a premium, government experts were effectively silenced.

More than any other government agency, the CDC's mission is to get accurate information to the public as quickly as possible, so that public health officials and citizens can respond appropriately. The main avenue of dissemination is through the news media. Bush's decision to marginalize the agency's press office in favor of Thompson and his close minions interfered with this mission. Reporters couldn't get their calls returned and as a result, complained New York Times medical reporter Lawrence K. Altman, produced stories that were "often conflicting and occasionally inaccurate" In other words, by centralizing authority, the Bush administration ensured that the public got information that was unreliable and slow in coming. In the absence of reliable information, the public succumbed to national panic. There were runs on gas masks and Cipro, creating shortages that could have led to supply problems had the attacks been more widespread.

In the year since the attacks, the Bush administration has put a great deal of effort into addressing the nation's vulnerabilities. But in the case of the CDC, that effort is likely to make things worse, not better. Rather than bulking up the agency's staff and freeing it to do its job, during the past year the White House has further tightened its grip on the agency concentrating more authority in HHS under Thompson. Were a bioterrorism attack to take place today, reporters--and by extension, the public--could expect not experts and scientists, but more Tommy Thompson and more runaround.

Kooped Up

The CDC press office wasn't always so ineffective. It has proved adept at handling the local press when discrete problems arise in specific locations, such as the outbreak of Legionnaires' disease in Philadelphia in the mid-1970s or the first Hantavirus outbreak in four Southwestern states in 1993. In Philadelphia, the CDC quickly identified the pathogen responsible for sickening the American Legion veterans and calmed a panicked city. After a mysterious respiratory infection killed 11 people--many of them young, otherwise healthy Navajos--CDC officials rapidly identified a Hantavirus as the culprit. While scientists worked feverishly to identify the virus, press officers handled the local media, quelled rumors, and convinced worried Native Americans that the threat to their health was being taken seriously.

But the agency doesn't perform nearly as well when it has to handle highly politicized diseases, especially those that attract widespread attention from the nation al media. The best example of this problem is the story of the AIDS virus.

Between 1981 and 1987, President Ronald Reagan was silent on the burgeoning HIV crisis that was devastating urban communities such as New York and San Francisco. It wasn't until 1988 that his surgeon general, C. Everett Koop, finally convinced the administration that the danger posed by AIDS to the public health outweighed conservatives' moral qualms about homosexuality and drug use, then the two main routes of transmission. The CDC responded by sending all Americans a brochure on AIDS prevention. The fact that the disease had become politicized led the White House to try to control the public message; in this case, that meant limiting it. This prompted AIDS activists to demand that the CDC fulfill its role by providing better HIV-prevention and education programs and greater local control over funding decisions and program design. In effect, they demanded a less autocratic, less politicized approach that was more responsive to the public health crisis. Gradually, the CDC acceded to this demand. The press office began opening its doors, first to AIDS activists and, later, to other disease advocates inspired by their example. Under communications director Dan Barreth, the office developed a "15-minutes" rule: Every reporter who called, no matter how small their publication or newsletter, would get a call back within 15 minutes, even if just to arrange a later interview. The agency trained press officers in specific scientific areas. Reporters loved it. Local health departments loved it. Then Barreth died suddenly in 1995.

His successors, Vicki Freimuth and Kay Golan, continued many of Barreth's improvements. But the office slowly reverted to a more reactive stance, no longer taking the initiative to develop relationships with the media that would yield dividends during the next health crisis. At the same time, the agency suffered a series of public relations fiascoes. In 1998, a CDC whistle-blower revealed that the CDC had misled Congress about the amount of money it had spent on research on chronic fatigue syndrome, angering lawmakers and activists. The General Accounting Office (GAO) launched an investigation, Congress charged the CDC with lying, and its director, Dr. Jeffrey Koplan, was forced to make a humiliating public apology in 1999. This scenario repeated itself the following year, when the GAO discovered that the agency had also misreported what it had spent on Hantavirus research. On both occasions, the CDC press office responded to criticism by circling the wagons, freezing out reporters, and alienating disease activists with whom it had developed positive relationships.

Given this background, it's no surprise that when Thompson took control of HHS, one of his first agenda items was to gain control of the scandal-plagued agency's public image. Putting himself in charge also dovetailed with the administration's desire for rigid message control and--as Thompson no doubt realized--boosted his public profile, and with it his clout in Washington. "Once the new administration came in, Thompson's office issued an edict that all communications would go through his office. The CDC press office would not be functioning the way it had been," recalls Robert J. Howard, who had worked in CDC press offices since 1991. "Tommy Thompson let it be known in no uncertain terms that he was going to be the talking head at HHS."

Mobius Loop

The political impulse to centralize authority is an understandable one. "We were trying to make sure we have a unified communications structure, that you don't have a communications center disconnected from the main CDC and disconnected from HHS," explains Kevin Keane, HHS assistant secretary for public affairs. But the practical effect was a disaster. After the attacks, reporters discovered that they could not get their calls returned, and that veteran press officers and government experts were forbidden from speaking with them--casualties of Thompson's centralization plan. "There's a history of just these kinds of difficulties and delays in getting access to CDC researchers, but no one actually saying, `We will not allow you to talk to CDC researchers'--and that's what's happened since 9/11," says Andrew Holtz, president of the Association of Healthcare Journalists and a former CNN medical correspondent.

Reporters soon learned that if they wanted information, it would have to come from the top--from the press officers at HHS or directly from the secretary himself. Inexplicably, this policy extended even to terrorism questions that didn't concern the September 11 attacks. When Holtz tried to get research on the impact of the Oklahoma City bombing on mental health, he got stonewalled. "It wasn't like it was proprietary or secret information," he says. "I just wanted to know how we could use the lessons of Oklahoma City to benefit the public mental health now."

Veteran CDC press officers, many of whom had expertise and longstanding relationships with national science reporters, found themselves silenced by this newly centralized command structure. "Once terrorism occurred, I and most other communication officers were not allowed, essentially, to do our jobs," says Howard. Two years earlier, Howard had written about bioterrorism for the journal Perspectives in Health. When, in October, The New York Times's Altman left a message inquiring about the article, Howard was stunned to learn that he was forbidden to return the call. When he complained that he was being prevented from doing his job, he says, "I was told I didn't see the big picture, that I didn't see the view that the White House had." Soon after, Howard quit in disgust.

These problems were exacerbated by the way the press office works. The CDC maintains a staff of media-relations experts who serve primarily as brokers, connecting reporters with experts. Few of these press officers, however, have Howard's level of expertise. In a non-crisis situation, this system works (albeit slowly) to place the most knowledgeable official before the public: the scientists actually working on a problem. But in a crisis situation, this system is utterly inadequate, even if there were no gag order on the press office. "The scientists themselves were incredibly busy trying to chase down the source of the exposure and trying to determine whether other people might be at risk for being exposed to it," says The Palm Beach Post's Bhatt. So they couldn't possibly have time to talk to reporters. And the people who do have time--the press officers--don't know enough to answer reporters' questions.

Adding to the difficulty was a possibly unintended problem with the country's disaster preparedness infrastructure. The Federal Emergency Response Plan, which went into effect on September 11, dictates that any act of terrorism falls under the jurisdiction of the Justice Department. It also allows the FBI to designate a lead agency to handle communications, such as HHS, in the event of a bioterrorist incident, or the Environmental Protection Agency, in the event of a radiological one. In practice, the moment the planes hit the World Trade Center and the Pentagon, all information on terrorism was consolidated through the White House and cabinet secretaries. For reporters, this resulted in an information blackout from the CDC and other health information agencies that they had long relied upon as sources. "Right after September 11, I ran into problems contacting sources I'd previously worked with [at CDC]. I got shut down. There was just a blackout on information," recalls Holtz. "I was told ... they were not giving interviews on any topics related to terrorism, and it was explained to me and others that this was part of the Federal Emergency Response Plan."

Meanwhile, press officers were left to work with what seemed to be a list of talking points and a simple Q-and-A fact sheet. Because of security concerns during the anthrax crisis, the FBI forbade them to provide detailed information,p and the media--and most of the nation's medical professionals--were kept in the dark about the threats posed by anthrax and the proper way to handle them. "When it became a criminal investigation, the public health message should have been of paramount importance," Palm Beach County Health Department director Jean Malecki says today. "I don't think there was an intention not to have it happen, but the fact of the matter is that it didn't happen. And the lesson is that it should happen."

To CDC officials, it was an unwelcome reminder of the agency's past failures. "It was like we forgot everything we ever learned from C. Everett Koop and the AIDS crisis and had gone back to this bunker mentality," says Howard. "[The] collegial atmosphere with the media just seemed to disappear at the time you needed it the most--in a crisis situation."

For Runaround, Press One

Since last fall, little has changed at the CDC. The agency's director, Koplan, stepped down in March and was replaced by Dr. Julie Gerberding. But the press office remains in shambles, as I discovered when I called the CDC to get information about bioterrorism.

My first point of contact was Chuck Fallis, one of only eight public affairs specialists who handle calls at the $6.8 billion agency's main press office. I asked him whom I should speak to at CDC regarding bioterrorism communications. "Hang on just a second, I'm really not sure," he replied, then referred me to Kevin Yeskey and Nancy Lee of the Bioterrorism Preparedness and Response Program of the CDC.

"Is Yeskey a doctor or a communications specialist?" I asked.

"I'm really not sure," said Fallis. "You'd have to ask him."

Repeated calls to Yeskey (who is, in fact, a medical doctor) went unreturned, though Lee, his secretary, did call back after several days.

"I have to refer you to the press office. We're not allowed to talk to you until you go through the press office," she said. When assured that I had already spoken with the press office, she said she'd have to look into it before speaking with me further. She did not call back.

Meanwhile, Lisa Swenarski, the CDC's acting director of media relations, returned a separate call to tell me about the bioterrorism program.

"They do not have bioterrorism media staff. I'm not sure exactly how it's organized," she admitted.

The situation at the CDC's parent agency, HHS, was marginally better. It took two calls to reach Bill Pierce, the agency's deputy assistant secretary for public affairs. But my request to interview D.A. Henderson, the famed smallpox eradicator and head of the newly created Office of Public Health Preparedness at HHS, was rebuffed. Pierce said he couldn't help me and that I'd have to talk to Keane: "Kevin's the man. It wouldn't be D.A." Neither Keane nor Pierce called back.

As these episodes illustrate, the chain-of-command problems that hampered HHS and CDC communications efforts during the anthrax attacks still have not been resolved. But the pitiable HHS and CDC press offices aren't just an irritant for journalists. Public health officials need to be able to communicate with the public in order to manage an epidemic. When the medias role as intermediary is compromised, so, mo, is the public health. "It's an issue that's important to the nation as a whole, not just to the media," says Mohammad Akhter, executive director of the American Public Health Association. "They should have an education strategy to reach the public at large in an organized manner. They need to work with the media and have a partnership, so that in case of a national emergency they are able to communicate."

Dark Winter

There is no doubt that last fall's media frustration with the CDC (and the pointed criticism of Thompson) caught the attention of the Bush administration. But rather than heed the obvious lesson and free up spokespeople and experts to talk to the media--or, better yet, hire press officers who, like Howard, have actual expertise--the administration has done precisely the opposite. In January, Thompson announced a plan to formally streamline communications at HHS within a single office: his own. (A provision in the 2003 budget consolidates public information and legislative affairs offices from the CDC, Food and Drug Administration, and National Institutes of Health within the office of the secretary.) In addition to cutting CDC scientists and reporters out of the loop, the plan looks as though it will further limit the ability of the press office to do its job, ensuring that whatever talent remains will be inclined to follow Howard's lead and depart. With the creation of the Department of Homeland Security, lead responsibility for coordinating the public message in the event of bioterrorism may shift even further away from CDC's on-the-ground expertise. In the meantime, "We've got to continue as if it's the status quo," says Keane, and continue to consolidate under HHS.

Any bioterrorist attack creates tension between public-health and law-enforcement concerns. If the CDC can identify, for instance, the precise strain of a pathogen and the country or lab that created it, then the FBI or the military, hoping to get a jump on the perpetrators, quite rightly might not want that information shared with the public. Yet in any attack, the vast majority of the CDC's information will not be of this sensitive nature, and getting that information to the public quickly and accurately could save lives. Citizens under attack must be informed of how to protect themselves--what symptoms to look for, who's at highest risk, where to go if they become sick, how medical professionals should handle or quarantine the ill. The CDC and the FBI should put procedures in place so that CDC press officers don't inadvertently reveal national security secrets. But silencing the entire CDC press office, as the Bush administration did last fall, only heightens the public's sense of uncertainty and fear--which, of course, is exactly what terrorists intend. Consolidating even more press power under Tommy Thompson, as the administration hopes to do, will only make things worse.

GARANCE FRANKE-RUTA is a writer living in Washington, D.C.

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