In my blog Hiding Bodies, I described the CDC decision to stop reporting the number of deaths in each State. Further, they loosened the definition of what the states could report to the CDC. I predicted that this would result in loss of valuable information as States could decide for themselves what they did or did not report to the CDC. Unfortunately, I was right.
From the CDC Weekly 2009 Flu Media Briefing, October 20, 2009. Dr. Anne Schuchat.
We have 28 states that are reporting laboratory-confirmed deaths.
And how many people have died in the 22 states that aren’t reporting laboratory deaths?
Who knows? Certainly not the CDC.
What does this chaotic, free-for-all look like at the State level? Hint, it’s not pretty.
A student run team of investigative reporters associated with the University of Southern California Annenberg School for Communication have found disturbing evidence that some public health authorities are hiding bodies in California. They published their findings in their online news source, Neon Tommy [hat-tip, BeWell]
Who is dying of the swine flu? It’s a simple question, but the answer has been hard to come by: Many counties across California and the nation are refusing to grant public records requests for death certificates of H1N1 victims.
Death certificates can help the public see who is dying, and why, and help monitor the performance of health officials in responding to one of the most significant healthcare crises in decades.
“We’re finding that it is incredibly difficult nationwide for a variety of reasons to get the actual names of the people who have died of H1N1,” Lucy Dalglish, executive director of the Reporter’s Committee for the Freedom of the Press, said in a telephone interview last week.
Two counties — Los Angeles and Fresno — reversed previous denials and released death certificates of swine flu victims to Neon Tommy in recent weeks. Ten other California counties rejected public records requests: Alameda; Contra Costa; Marin; Napa; San Bernardino; San Diego; San Francisco; Santa Clara; Shasta and Sonoma.
This information was refused on the basis of the Health Insurance Portability and Accountability Act (HIPAA) which protects patients’ privacy. However, this law was intended to protect living patients from having their medical history disclosed by their physicians. It was not intended to block requests for death certificates, which are a matter of public record.
Dalglish, of the Reporter’s Committee for the Freedom of the Press, agrees that HIPAA is a red herring. “HIPAA is intended to apply to medical providers that exchange information electronically,” Dalglish said. “A state public records agency is not a medical provider. So the fact that [counties] would invoke a federal law saying it somehow governs their own state record-keeping ability is ludicrous.”
One of the results of Neon Tommy’s investigations is the finding that approximately half of the death certificates of people later determined to have died of pandemic flu did not have this listed as the cause of death. This isn’t just a matter of bookkeeping, it’s a matter of life and death. People who are not properly diagnosed can die from a lack of treatment.
Without detailed information on who has died from pandemic flu, it is difficult to discern patterns. For example, if people with Down’s Syndrome are not being diagnosed in time, is this because parents and doctors do not know that these people are at increased risk? If so, then a more aggressive education program could be launched.
There are reports of people who are dying with symptoms of pandemic flu but who are testing negative. What is being put on their death certificates? How many people are dying of this “mystery” disease? Is this the early wave of a new and more lethal virus?
Don’t ask the CDC. They have no idea. Don’t ask your State public authority. They have no idea. Don’t ask your County public health authority. They have no idea. And if you start to get severe symptoms but test negative, don’t ask your doctor what is killing you. Because he will have no idea.