The following is a story about National Cancer Institute (NCI) spending public funds to create a publication that claimed to cover the enterprise of cancer research. The NCI newsletter appears to have been created in order to blunt the coverage of the institute by The Cancer Letter, which chronicles the development and growth of cancer research. Ideally, this story — based on over 1,600 pages of documents spanning nearly a decade — would have been written by another publication. To manage the author’s conflict of interest, Amos Gelb, associate professor at Northwestern University Medill Journalism School and president of Washington Media Institute, edited the story. The following is an excerpt.
By Paul Goldberg
In December 2003, after an explosion of feverish work, NCI stood on the threshold of launching a weekly newsletter that would cover the entire field of cancer research.
Other NIH institutes publish house publications, but none cover their entire areas of research.
The NCI newsletter promised to serve as the gateway for information about its publisher — and to provide coverage of NIH, Congress, FDA, CDC, the pharmaceutical industry, advocacy groups, and cancer centers. In short, it would serve as the definitive publication of record.
A trail of emails and memoranda obtained by The Cancer Letter reveals that over preceding months, the institute’s employees and contractors had been learning about news judgment, writing, and editing.
Features to be published, including “Meet a Researcher” and “Featured Clinical Trial,” were defined. Standard operating procedures for submissions were developed, and individuals who provide clearance were designated.
NCI staff members are not reporters, but they rose to the challenge. They held meetings, created diagrams and memoranda — and, of course, hired outside consultants.
The publication they designed — ultimately named the NCI Cancer Bulletin — was neither the largest nor the most controversial of projects launched by then-director Andrew von Eschenbach. The history of the Bulletin — which died with a whimper after nine years of operation — describes an idea gone amok.
The documents made public here cut a peephole into one of NCI’s most opaque operations — its $44.9 million communications unit — enabling outsiders to observe the institute in the act of trying to blur one of the most important separations of power in American democracy: The line between the government and the press.
The Bulletin’s nine-year run also makes it possible to re-examine the hazards of unrealistic promises. The promise von Eschenbach made to the world in 2003 was as ambitious as it gets: He would reduce cancer to a chronic disease within 12 years, by 2015. Trapped by his own goal, von Eschenbach launched gigantic projects intended to make miracles possible. No scientific advisory board was asked whether a venture into the news business would advance NCI’s communications agenda.
The more it looks like a newspaper …
NCI spends more on communications than any NIH institute. This may be changing, as the NCI Office of Communications and Education, which spent $44.9 million last year, is getting scrutinized by the National Cancer Advisory Board.
By way of comparison, FDA’s Office of External Affairs, which supports the entire agency, has an annual budget of less than $12 million. Its Center for Drug Evaluation and Research’s Office of Communications has a budget just over $13 million. These figures include both salaries and operations.
These two FDA offices are responsible for covering a wide range of activities, including consumer education, consumer and health care professional outreach, website and social media services, internal communications, and drug safety announcements, as well as PR for all therapeutic areas — including food and tobacco, not just cancer. Von Eschenbach couldn’t be precluded from launching any project he wanted, and the Bulletin was one of them.
An email exchange dated Dec. 30, 2003, provides insight into his thinking about the venture.
A week before the Bulletin’s launch, the committees that had been designing the newsletter over the preceding three months had to confront a thorny question that, alas, also exposed their lack of understanding of the fundamentals of their new craft, journalism — trying to determine how much of the front page should be devoted to von Eschenbach himself.
Somebody had to ask von Eschenbach whether he intended to keep the entire front page to himself. In other words, would he be willing to share the cover with news? In an earlier mock-up, von Eschenbach’s Director’s Update column (ghost-written with input from a 16-member “Director’s Corner Editorial Board”) took up the entire front page.
“In addition to featuring the Director’s Update on the front page of the Bulletin, we also would like to propose including a 'News' feature,” Mary Anne Bright, then-director of the Cancer Information Service program, suggested to von Eschenbach in an email. “I think that our readership will be interested in news from the Institute and placement on the first page would likely spur their interest.”
It appears that von Eschenbach was unaware of a key element of the culture of journalism. With the possible exception of obituaries, no credible newspaper would run a photo of its editor or publisher on the front page. A front-page column and a photo would be unthinkable. The Bulletin’s battle for credibility would be lost from get-go.
Yet, the publication went on, burning through millions of dollars while caught in a permanent identity crisis, and seeking to foster the illusion of credibility.
A tally of emails and memoranda shows that in the run-up to the Bulletin’s launch, 77 people — employees and contractors — had some degree of involvement in the project. The cost measured in their wages and distraction from other work can never be properly tabulated.
As recently as last December, the Bulletin held editorial meetings, which occupied at least a dozen government employees for at least an hour-and-a-half.
Had the Bulletin been launched outside the government, it would have been regarded as financially mismanaged, overstaffed, laden with high costs, and lacking any prospect of generating revenues.
At the time of its demise, the Bulletin employed at least four fulltime equivalent (FTE) employees, who, altogether, drew the salaries of $468,080 annually. By way of comparison, the NCI media relations office, which actually interacts with the press, also has four FTE positions.
The Bulletin also used the services of contract writers who, together, were paid $110,000 in 2012. The bills for website development services came up to $31,440. Total cost: $609,520.
The Bulletin had other costs.
The Spanish edition cost about $24,000 a year, NCI officials say. Some additional staff members — including two videographers — were involved part-time. “Their specific support in the area of video production constituted only a small part of their overall assigned duties at NCI,” institute officials said.
Assuming this level of spending over nine years — a conservative assumption — had the money spent on the Bulletin been redirected, it could have provided direct support for 18 years’ worth of R01 (Research Project) grants. It’s unclear whether this money can be redirected. NCI officials said Bulletin staff members have been reassigned to other jobs.
Prospective clearances
Had NCI chosen to spend the $45 million on something other than PR, it could have provided direct support for more than 110 additional R01 grants, increasing the total number of grants by about 10 percent.
Another option would be to reverse the cut the NCI cancer centers program sustained in 2011, or boost the clinical trials cooperative groups program by about 15 percent, or double Harold Varmus’s Provocative Questions initiative.
Usually, NIH reviews press releases and printed materials — such as newsletters — published by institutes and centers. However, instead of reviewing the Bulletin, every year, NIH issued “prospective clearances,” allowing the institute to continue to blur the line between journalism and PR.
“The NCI Cancer Bulletin has requested and received from the Department initial and continued publication/clearance agreement each year since the newsletter’s first issue in 2004 to its final issue on Jan. 8, 2013,” said John Burklow, NIH associate director for communications and public liaison. “NCI assured me that all content published in the newsletter first obtained thorough subject matter expert review and clearance from NCI divisions, offices and centers and other NCI approving officials, in accordance with the Department’s directives and clearance agreement. Any and all content that covered issues related to programs, policies and announcements of DHHS (Department of Health and Human Services) or other OpDivs (operational divisions) were also cleared through the subject matter experts or approving officials of those agencies or offices.”
NIH had no politically feasible way to deal with the Bulletin.
The NCI perspective wasn’t fundamentally concordant with that of NIH. Von Eschenbach was in the midst of a life-and-death struggle to “eliminate suffering and death due to cancer” by 2015. Meanwhile, NIH had no overarching goal to end suffering and death from all disease by any particular date.
Yet, since the NCI director was a presidential appointee and a Bush family friend, the NIH director was in no position to control him. Papering over the problem with a prospective clearance was a prudent way to go.
The Bulletin’s development process took less than four months — lightning-fast by government standards …
The motivation for starting the Bulletin was obvious, even at NCI’s lower rungs.
“It was very much an act of spite,” said a contributor, who spoke on condition of not being identified by name. “It certainly wasn’t the result of a communications plan, and here are all the things we want to do … In the government those things can take a year or two.
“To have this done on such short notice was quite contrary to typical government processes.”
The peril of self-covering
By being both a publisher and a public health organization, NCI was in the unique and ethically questionable position to give itself scoops.
For example, on April 6, 2004, the Bulletin reported that the members of the data and safety monitoring board of a major NCI-sponsored trial — the National Lung Screening Trial — had resigned.
The board members walked off, citing the government’s failure to give them protection from lawsuits that may arise in connection with the trial.
The Bulletin got the scoop because it was part of NCI and because — for some reason — the institute wanted to make the disclosure. This was a questionable decision, because responsible news organizations don’t report on proceedings of DSMBs (Data Safety Monitoring Boards). This is done out of respect for patients who enroll in such trials.
More importantly, institutions that sponsor clinical trials avoid discussion of events stemming from operations of the DSMBs, fearing — correctly — that the public would perceive controversies on these boards as signs of problems with the data or safety.
By the time von Eschenbach departed from NCI (in 2006), the Bulletin was an established program. It had staying power.
Von Eschenbach’s successor, John Niederhuber, didn’t require the services of an editorial board, and he had no particular use for the Bulletin. Chipping away at the institute’s communications budget, he cut back the Bulletin to a two-week schedule.
Yet, the Bulletin continued for at least another six years.
It’s not clear whether the Bulletin will be missed.
Story links and resources
Amos Gelb and Paul Goldberg talk about the NCI Cancer Bulletin story in a video interview.
“NCI Ends Brash Foray Into the News Business” The Cancer Letter, Feb. 1, 2013.
“Is $45 Million Too Much to Spend on PR? NCAB Panel Weighs NCI Communications Budget” The Cancer Letter, Dec. 7, 2012.
“Cancer Costs: Educating Patients is Key, But the US National Cancer Institute Must Keep Spending in Check” Nature editorial, March 13, 2013.
Paul Goldberg is the editor and publisher of The Cancer Letter, a weekly publication focused on drug development and the politics of cancer.
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