The New York Times recently reported that the Veterans Administration (VA) is no longer releasing cancer statistics to the cancer registries without additional limitations. This means that cancers, especially prostate cancer will be underreported. Each state has been negotiating agreements with the VA and some states have found it impossible to comply with the VA new confidentiality regulations. This is a major problem for activists who use statistics for planning their activities or evaluating the success of programs within their states.
How has this change impacted the statistics just released? How will it continue to impact on cancer statistics? How will it impact on prostate cancer research?If it appears that we are experiencing successes with prostate cancer that may not be real, how will that impact on potential funding?
What can activists do? Communicate with the individuals in your state who collect cancer statistics. Are they getting complete statistics from the VA? Are there things that you can do to help them solve their problems? Communicate with the VA about the problems that this change in reporting has on the prostate cancer community.
Read about the problem in more detail in the NYT click here.
Read the VA Directive click here.
Read about the current release of cancer statistics click here.
When I read the recent article about the 2.1% reduction in cancer deaths over 2002-2004 I immediately thought of the VA and its policy of NOT reporting. Is this what is making the change in cancer deaths? In any case, a 2.1% change per year is VERY LITTLE. Billions are spent on cancer research and treatment with a teeny tiny return. Nothing to be excited about.
When that is combined with the withdrawal of VA stats, an area the government could ‘control’, I am very anxious about the truth of our War on Cancer.
The organization I built and volunteer with offers information on many different possibilities using complementary and alternative approaches. These get almost NO respect from NCI (very little funding and ‘ghetto-ized), and NONE from the pharmaceutical industry.
The effect of the VA withdrawal obviously will be to shatter the continuity of the statistical base for SEER trending reports. Whether it is upward or downward, or even of no impact, we will not know.
The VA is clearly responding to their own ineptitude in securing their data. As a VA client I have seen ridiculous restrictions of communication with doctors since the much publicized loosey-goosey data security practices. Now they want to deflect attention from their own shortcomings by placing impossible restriction on the scientific community in the use of the mandated data. The NY Times article http://www.nytimes.com/2007/10/10/health/10cancer.html lists encryption of the data as one of the VA stipulations, which is a joke when you consider that the 26.5 million record “spill” of VA data was not encrypted.
This is a classic case of petty bureaucrats reacting to egg on their face and being slapped by Congress. Problem is, it ignores the importance of the data they are withholding, and flaunts the law that the states must follow.
What can we do about it? Not much, really. Congress made the law that the VA is flaunting, so it should be up to Congress to put the VA in compliance. But ultimately the bureaucrats will have the last say even if Congress steps in. Amazing what those rascals can do to have their way!
Frankly, this will ultimately become only a blip on the statistical timeline, and, IMO, hardly capable of generating much difference, especially as the years pass. Not much of a mountain, this molehill. The sky isn’t falling, Kathy.