Cancer Rates and Hiding of Data that Affects NATION WIDE STATISTICS

AS mentioned in my previous posting I would have more on Gulf War and Cancers.  This is an article I saved from October 2007. 

States and V.A. at Odds on Cancer Data
New York Times  October 10, 2007 By GINA KOLATA

Now if this situation has not been resolved we have a true problem in that Cancer Data published Nationally is going to be less than accurate.  This not only affects Desert Storm Veterans, Vietnam Veterans, but also our newest Veterans OIF with the BURN PITS and their compensation and benefits in the future. And yes as predicted in this piece by G Kolata we have seen changes in the National Cancer Data ie a decrease in the numbers.  Isn’t that intersting,  HAS This Been Corrected?  Good question.

WE need To Have A Desert Storm Veterans Diagnosed Illness Registry by unit, age, type of cancer or specific diagnosis and this needs to be available online to all veterans, civilians, researchers, medical providers.  Hopefully all will share the articles we are writing with their Elected Representatives, Senators, Doctors, other veterans because we need all speaking up to make CHANGE.  YES WE CAN!

Yet this year we have had no bills introduced for Desert Storm Veterans to address the registries we have requested or any of the other worthy suggestions.

States and V.A. at Odds on Cancer Data
New York Times  October 10, 2007

By GINA KOLATA
Published: October 10, 2007
Until recently, the nation’s cancer surveillance program was humming along. In every state, investigators were getting reports from every hospital describing every cancer patient they had seen.

The data, which include the name, address, age, race and medical history of patients, are used to compile cancer rates. They also are used to investigate survival and other issues, like unusual cancer clusters and whether patients’ experiences are different depending on their racial or economic group.

While other hospitals are required by state laws to submit data, Veterans Affairs hospitals are not. And now, for the first time, veterans hospitals have stopped providing information on their cancer patients. The concern, the Veterans Affairs Department says, is protecting patient privacy. The department has set up a new national directive setting conditions for using patients’ personal information and has said it cannot provide data unless and until states sign it.

At issue, says Dr. Joel Kupersmith, chief of the department’s research and development office, is “the dynamic tension between patient privacy and the desire to use patients’ private information to do research.”

Only a handful of states have signed the directive so far, and Veterans Affairs is just starting to send some of them data. Other states, including California, whose population includes more veterans than any other state’s, have not signed and say the department’s conditions are almost impossible to meet.

In the meantime, when the National Cancer Institute publishes its latest national cancer statistics next summer, they will be missing data from V.A. patients. And that will make them hard to interpret. If prostate cancer rates fall is that because V.A. patients were excluded, for example?

“Cancer research will be severely impacted,” said Dr. Brenda K. Edwards, associate director of the cancer institute’s surveillance research program.

Dr. Edwards added that the situation was so complicated that investigators could not even find a good way to estimate what the new rates would have been if the veterans’ data had been provided.

The Centers for Disease Control and Prevention also relies on data from the state registries. Christie R. Eheman, acting chief for the C.D.C.’s cancer surveillance branch, says she has been talking to V.A. administrators, trying to resolve the situation.

“I think we’ve got some hard work to do,” Dr. Eheman said.

But the veterans agency says there is a limit to how much it can compromise.

“The V.A. has come down clearly,” Dr. Kupersmith said. “The paramount issue for us is the protection of patient privacy and the protection of patient information.”

He added that the department was especially sensitive to privacy concerns in light of incidents like the theft by teenagers last year of a laptop computer containing personal information on 26.5 million veterans.

The impasse over the cancer data began innocuously enough in California, in October 2005, with a routine request. The state’s central cancer registry needed to renew its agreement with V.A. hospitals in the state, as is required every three years.

But this time, the veterans agency had some questions. When California sent in its renewal materials it made clear that the state had provided V.A. data to qualified outside scientists.

But who, the agency asked, was getting that medical and personal information? And what were they doing with it?

There was no way to reply, said Dr. Dee West, the chief scientific officer for the Northern California Cancer Center, one of several surveillance centers in the state. The data go to many researchers and the veterans’ data are mingled with those from all the other hospitals. It would be impossible to sort everything out.

And the agency’s requests came out of nowhere, said William E. Wright, who was chief of the California cancer registry. The V.A. had been providing its patient data since 1972 without incident.

Finally, after a barrage of e-mail messages between Dr. Wright and the V.A., the state asked Veterans Affairs to clarify its position. The department replied with a directive on Aug. 22 that applied to every veterans hospital. And the agency told its hospitals to stop providing information on cancer patients unless and until the states signed its new directive.

Among other things, it says that anyone who wants to use personal data involving Veterans Affairs patients must either get permission from the V.A.’s under secretary of health or find an agency researcher to collaborate with and get permission from the hospital’s ethics board. The directive also says that patient information must be encoded so that unauthorized people cannot read it.

Cancer researchers say they have no idea how they will meet the conditions, said Tina Clarke, an epidemiologist at the Northern California Cancer Center.

For example, Dr. Clarke said, it is not so easy to find a V.A. researcher to collaborate with.

“It means the V.A. collaborator has to have time and has to want to work with you on your research question,” she said.

Published: October 10, 2007
(Page 2 of 2)

As for the ethics board, Dr. Clarke said it could take a year or more to get the required permissions from a local board, the registry’s board and, now, the V.A.’s board. Any time a board wants a change that the others did not approve, the proposal would have to go back to the others.

“Privacy concerns are serious,” Dr. Clarke said. “But at the same time, this is a baby with the bath water problem.”

The directive leaves states with three options: do not sign, sign and use the data for research under the V.A.’s conditions, or sign and use data only to compile numbers of cancers. Investigators do not need patient names or other identifying patient information to simply count how many cancers were reported.

With the third option, however, research is limited. For example, finding death rates requires following cancer patients. That means knowing their identities. So do investigations of questions like whether people who lived near a chemical dump were developing cancers. Investigators would need the names and addresses of cancer patients in the area, including V.A. patients.

V.A. administrators say they understand the difficulties but have to protect patients.

“We serve mostly an older population,” said Raye-Anne Dorn, the department’s national coordinator for cancer programs. Many, she said, do not want to be contacted by researchers.

In fact, Ms. Dorn said she felt that way herself. “I’m a vet and I’m also a cancer survivor,” she said. “I wouldn’t take kindly to getting a call from researchers.”

Senator Daniel K. Akaka, the Hawaii Democrat who is chairman of the Senate Veterans Affairs oversight committee, expressed sympathy for the V.A.’s position.

Researchers, Mr. Akaka said, “need to try to see what they can do about working with the system and the process.”

Now, states are asking: Is it better to go along with the V.A. and get the data, even if the restrictions make it almost impossible to use the patient information in research? Or is it better to hold firm and not sign?

New Jersey decided to sign, said Dr. Eddy A. Bresnitz, the state epidemiologist. “We don’t have a choice,” Dr. Bresnitz said. “What are we going to do? At the end of the day we want the data.”

Yet the situation, with some states signing and others holding firm, creates a new problem, Dr. Bresnitz said. How can anyone accurately compare cancer rates among states?

In the meantime, V.A. patients will be missing from the latest cancer reports, creating gaps in the cancer record, researchers say. These patients constitute 4 percent of the cancer patients in California, or about 3,000 cases, said Dr. Dennis Deapen, director of the Los Angeles Cancer Surveillance Program.

California has not signed the directive, and its centers have not been getting data in the two years since the impasse began.

It is especially difficult now to compile national statistics, said Dr. Edwards of the cancer institute. In some states, V.A. hospitals reported data until last month. In others, limited amounts are being reported, and in still other states, no data have been reported for a year or more.

Dr. Edwards is working with other statisticians to see if she can estimate of how many cases are going to be missing in this year’s cancer report.

But, she said, “it’s not clear how that accurate that estimate is going to be.”