Months before the Centers for Disease Control and Prevention made Atlanta lawyer Andrew Speaker the unwitting poster boy for drug-resistant tuberculosis, the agency and its advisers discussed a strategy to get more funding by publicizing the deadly strain of the disease, records show.
Frustrated that money for combating TB had dwindled as Congress favored newer threats from bioterrorism and bird flu, advisers suggested taking "drastic actions," according to December 2006 meeting minutes from the federal Advisory Council for the Elimination of Tuberculosis. The council is based at the CDC in Atlanta.
One strategy centered on publicizing the urgency of combating XDR TB --- a rare, new form of extensively drug-resistant tuberculosis. "The implications of XDR TB for TB control in the United States should be compiled and communicated as a strong advocacy tool to increase the TB investment," the minutes state.
Five months later, CDC's lab diagnosed Speaker as having XDR TB, and the agency issued a federal isolation order --- its first in more than 40 years --- and held a national press conference about how he possibly spread the disease aboard international flights.
The actions were in stark contrast to the private way the agency dealt with 100 other TB cases involving airline travelers, both before Speaker and after, including an incident last month when a severely ill drug-resistant TB patient flew from India to Chicago.
"It's unheard of to have that level of public notice," said Dr. Michael Iseman, a national TB expert and professor of medicine at the University of Colorado, where he has been one of Speaker's doctors. "I don't think it was constructive."
The handling of the Speaker case was so unusual that it has raised questions among other TB experts, including whether CDC publicized Speaker's case in a quest for more money.
CDC officials are adamant that the XDR funding strategy played no role in how they handled Speaker's case. The press conference was needed so CDC could quickly track down and test passengers, said Dr. Ken Castro, director of CDC's TB division.
CDC Media Relations Director Glen Nowak said he pushed for the press conference because of a belief in transparency and the likelihood of significant media interest in the isolation order and an XDR TB case.
CDC Director Julie Gerberding's May 29 press conference announced that a man with XDR TB was being held in a hospital under a rare federal isolation order. She said the agency was notifying all passengers who flew with him on two international flights so they could get TB tests.
A media storm erupted as details emerged about the Atlanta lawyer's travel for his Greek wedding --- despite being told not to fly --- and the couple's frantic honeymoon run from health authorities, evading no-fly lists and border control checkpoints as they tried to get back to the U.S. for specialized treatment.
Despite the public perception of Speaker as a modern-day Typhoid Mary, tests at a Denver hospital later showed he didn't have the XDR TB that CDC cited in its press conference, but a more treatable form of drug-resistant TB. Nobody appears to have caught TB from Speaker, tests of more than 250 airline passengers show.
Tuberculosis experts say the Speaker case --- because of its high profile --- gave TB its biggest publicity boost in decades and helped secure rare funding increases for combating the disease.
"It was almost as if some prophecy was being fulfilled," Dr. Michael Fleenor, chairman of the federal TB advisory council, which five months earlier had sent a blunt letter to Secretary of Health and Human Services Michael Leavitt warning that "our nation is facing an imminent airborne biological threat" from XDR TB.
The ability of CDC and local health officials to protect the U.S. "is slipping beyond recovery," the letter said. That warning, like many before them, did nothing to increase funding.
Then Andrew Speaker hit the news.
'Fortuitous' case
After years of flat funding, the 2008 federal budget includes $140.4 million --- a 4 percent increase --- to combat TB in the U.S. It would have been a 9 percent increase if President Bush hadn't vetoed the Labor/HHS funding bill and required cuts.
CDC officials say bills seeking increased funding for TB aren't unusual and that agency officials have spoken out about XDR TB for years. They noted that Gerberding testified before Congress about XDR TB last March, two months before the agency had even heard of Speaker.
TB advocates and the CDC agree that Speaker gave funding legislation the traction it previously lacked. The Speaker case was "fortuitous," said Fleenor.
Dr. Alan Bloch, an expert in the airborne transmission of TB and measles, said he's wondered since last summer: "Was there a hidden agenda to use Andrew Speaker's case to get more money for TB control?"
Bloch, who spent 25 years at CDC before he retired in 2005, said the agency's response to Speaker seemed overblown, given that test results known to health officials and Speaker's lack of symptoms made him unlikely to spread the disease.
Bloch conducted the first national survey of drug-resistant TB and designed the expanded TB surveillance system that CDC used to identify the 49 XDR TB cases in the U.S. from 1993-2006.
Watching Gerberding's televised press conference in May, when she announced the CDC had issued the first federal isolation order since a 1963 case of suspected smallpox, Bloch said he assumed "this patient must be extremely contagious.''
"I had visions of a non-compliant patient who was the tuberculosis equivalent of Typhoid Mary, who was highly infectious. When I found out this patient did not meet other criteria for being a very infectious case, I was puzzled."
The CDC has refused for nearly seven months to release documents under the Freedom of Information Act about any role the agency's XDR TB funding strategy played in its handling of the Speaker case.
CDC spokesman Nowak called any suggestion of a money motive "a slap in the face" to agency staff who work to protect the public. "The thought that we would have done all this to get publicity is laughable," he said.
Castro, the CDC TB division director, said the agency's actions were justified, because there was no way to know whether Speaker's disease status had worsened after he left Atlanta against the instructions of health officials.
Although Speaker voluntarily drove himself to meet CDC scientists on returning to the U.S., Castro said the isolation order was necessary, because Speaker had previously disobeyed health officials.
Low-risk patient
During a meeting last summer, members of the federal TB advisory council --- which urged using XDR TB to help get more money --- questioned CDC's approach, including the tracking and testing of passengers on the plane with Speaker.
"There was a discussion of should they have done anything," Dr. William Burman, a member of the advisory council, said in a recent interview. "From the beginning, Andrew Speaker was of very low risk. Everyone knew that. CDC knew that."
Burman said CDC staff told the advisers Speaker's case met criteria for an investigation because the length of the trans-Atlantic flights made transmission possible and because he had XDR TB, which is very difficult to treat.
"But everyone involved knew the likelihood of transmission was very, very low," said Burman, who is medical director of the infectious diseases clinic at Denver Public Health.
Burman says he suspects CDC would have faced criticism had it not held a press conference.
Dr. Lee Reichman, executive director of the Global Tuberculosis Institute at the New Jersey Medical School and a liaison on the advisory council, agreed. "They were damned if they did and damned if they don't," he said.
Iseman, the Colorado TB expert who has treated Speaker, questioned the public health need to go public in a TB airline investigation in which officials can get manifests naming the other passengers and contact them privately.
"Andrew Speaker became the face of XDR TB --- although he didn't have it," Iseman said. "I would venture to say that Andrew Speaker and his family have had substantial, if not irreparable, trauma."
Iseman and other TB experts said the world of medicine is acutely aware of how HIV and breast cancer have become well-funded through aggressive advocacy and putting faces to the diseases.
Of CDC's investigations of 100 TB patients who in the past 18 months boarded planes --- including five patients who flew with multidrug resistant TB --- the only press conference the agency has held was in the Speaker case. Then again, Speaker was the only one believed to have XDR TB.
Tests at National Jewish Medical and Research Center in Denver, the renowned TB hospital which treated Speaker, later found he didn't have XDR TB, but a more treatable multidrug resistant TB, or MDR TB.
At a July 3 press conference announcing Speaker's new diagnosis, CDC officials said the agency would have responded the same way if they'd known he had MDR TB.
While no press conference has been held in the latest case of an airline passenger traveling with MDR TB, CDC officials say that's because they had an easier time getting the list of other passengers on the Chicago-bound plane with the woman than it had in the Speaker case.
Baseline TB tests must be given within eight weeks of possible exposure.
Foreign carriers and outbound flights make tracing potentially exposed passengers more difficult, said Dr. Martin Cetron, director of CDC's Division of Global Migration and Quarantine.
By the time the CDC was able to request the Air France list from Speaker's flight, two weeks had passed, and the airline took nearly a week to produce the names. The agency was able to secure the list from the woman's American Airlines flight in 14 hours.
That fact has allowed the CDC to privately track down the 44 passengers seated nearest to the woman on the Dec. 13 flight from New Delhi, India, officials said.
The woman, who was coughing on the flight, was so ill with TB she went to an emergency room a few days after arriving home in California.
In contrast, Speaker never coughed or had any TB symptoms; the disease was only diagnosed because it showed up on a chest X-ray after he suffered an unrelated injury. Still, all of the passengers on his two trans-Atlantic flights were advised to seek tests.
Castro said every TB case is different. If faced with the same circumstances as the Speaker case again, Castro said he'd handle it the same way, including going public.
"In this particular case," he said, "we had no other choice."
TB: AT ISSUE
> Tuberculosis is a disease usually of the lungs caused by bacteria. It is spread through the air when a person with an active form of the disease coughs or sneezes.
> In the United States, there are about 14,000 new cases of TB each year and about 650 deaths. About 125 cases each year involve multidrug resistant TB, meaning the bacteria can't be killed by antibiotics commonly used to treat the disease.
> Scientists are particularly concerned about the emergence of new TB strains that respond to even fewer --- or no --- drugs. There have been 49 documented cases of these extensively drug resistant TB (XDR TB) cases in the U.S. from 1993-2006.
> Worldwide, 9 million people each year become sick with TB, and there are almost 2 million TB deaths.
Source: CDC, World Health Organization
COMPARISON OF TWO TB CASES
MAY 2007
The patient: 31-year-old Atlanta lawyer
Diagnosis: Multidrug resistant TB*
Outward symptoms: None
Flights of concern: Atlanta to Paris; Prague to Montreal
CDC alert: Press conference advising all passengers be tested.
Isolation order: Yes, federal
DECEMBER 2007
The patient: California woman
Diagnosis: Multidrug resistant TB
Outward symptoms: Severely ill, coughing
Flight of concern: New Delhi, India to Chicago
CDC alert: Private notification of 44 passengers seated closest to patient. No press conference.
Isolation order: Yes, local
* CDC initially announced a diagnosis of extensively drug resistant TB, but tests later showed he only had MDR TB (multidrug resistant TB).
Copyright 2008 The Atlanta Journal-Constitution