Non-Reporting of Cancer Numbers

THE HEIGHT OF ABSURDITY

The next time you read a news story about how cancer is decreasingly a problem in the US, think again. California officials have revealed that the US Veterans Administration (VA), which treats many American veterans, has been deliberately withholding cancer incidence data from state cancer registries across the country. This has resulted in up to 70,000 newly diagnosed cancer cases per year - about 5 percent of the national total - going unrecorded in the past few years.

An internal report from the California cancer surveillance agency reveals that the VA stopped reporting cancer cases to state registries in late 2004. As a consequence of this policy, "statewide and national data will be incomplete and inaccurate," says Kurt Snipes of the Cancer Surveillance Branch of the California Department of Health Services in Sacramento.

VA officials admit that they are withholding cancer incidence data, but argue that they are doing so to protect veterans' privacy rights. Yet, oddly, they continue to report non-cancer diagnoses, including HIV/AIDS. The VA has also refused to allow state health officials to conduct routine audits of cases at VA hospitals.

According to Reda Wilson of the Centers for Disease Control (CDC) in Atlanta, VA hospitals in at least 13 states are no longer reporting cancer cases and VA reporting has been "inconsistent" in an additional 14 states. Furthermore, Florida's cancer registry has never received any VA cancer data at all. The VA itself admits that 29 veterans hospitals withheld cancer data in 2006.

Dr. Wilson says that this deliberate underreporting has resulted in somewhere between 40,000 and 70,000 cases being potentially missed nationally each year. As a result, the official figures for the annual US incidence of major killers such as prostate, lung and colorectal cancer may all now be significantly underestimated.

The National Cancer Institute (NCI) and other national surveillance organizations admit that nationwide cancer rate estimates next year will be artificially low because of the VA's omission. According to officials, the omission could introduce "uncorrectable bias" into future epidemiological studies. "Research from the mid-2000s will forever require an asterisk, or perhaps a sticker on the cover, to remind researchers and the public that they are not correct." All efforts by scientists at the NCI and elsewhere to prevent this policy from being allowed to introduce such glaring bias have failed, and the US Department of Health and Human Services (HHS) has refused to intervene.

"We've been working with the VA for more than 5 years, but it's just gotten worse," said Holly Howe of the North American Association of Central Cancer Registries.

The VA has replied with unbelievable defensiveness to the charges. "It is beginning to sound like a witch hunt by the national [cancer surveillance] standards setters to punish the VA for not subordinating itself to them," said Raye-Ann Dorn, the VA's national coordinator for cancer programs. "Their primary beef is that the VA said no to their strong arm tactics and has the audacity to protect our patients' private health information from inappropriate invasions of their privacy," she said.

I have rarely heard such an implausible explanation from any government official. Witch hunt? Strong arm tactics? We're talking about cancer statistics here, numbers on which crucial public policy decisions and recommendations necessarily depend.

So what's really going on? Is this just bureaucratic trench warfare or is there are some hidden political agenda at work? No one knows. But let us for the moment apply the Roman principle of "qui bono?" That is to say, let us ask who might benefit from this otherwise inexplicably stupid action? Low numbers generally are taken as a sign of progress in the war on cancer. It now appears that for years someone has been fiddling with the record books, quietly reducing the overall number of cancer cases. Inevitably the apparent drop in cancer incidence lends credibility to the frequently-uttered assurances of steady progress in the war on cancer.

In mid-January, for instance, Pres. Bush went to the NCI, where he publicly took credit for much smaller changes in the cancer statistics. Taking advantage of a drop of just one-half of one percent in cancer mortality between 2003 and 2004 he intoned: "Progress is being made." Bush also characterized this tiny decline in mortality as "the steepest drop ever recorded." One can only imagine what current administration spokespersons will make of an apparent 5 percent decline in incidence.

The VA itself is currently completing a study of cancer in Gulf War veterans. In addition, media reports have begun to raise concerns about possibly increased cancer rates in Iraq war veterans. But, ironically, the VA is basing its study on - you guessed it - the very state cancer registries from which it deliberately withheld data. Some state officials have therefore refused to participate in the VA's Gulf War study, because they don't believe in the validity of their own data.

The NCI and state cancer registries are now attempting to introduce some statistical corrections into the data in order to accommodate these missing veteran cancers and minimize the impact of their omission on estimates of US cancer rates. What a situation, when one arm of the government has to work out complicated formulas to correct for errors and omissions committed by other agencies.

Acknowledgement: I would like to thank one of our loyal readers for bringing this news story to my attention last week.
--Ralph W. Moss, Ph.D.