Eight states still do not mandate reporting of CJD cases to public health authorities
Posted Jan 08 2010 7:30pm
Neuropathologists are obligated to keep generally up to date on Creutzfeldt-Jakob disease (CJD) research as they are called upon to perform autopsies on patients whose dementia may have been caused by a prion disease. The most overlooked players in the CJD research arena are patient advocates. Many patient advocates are fiercely motivated, often having been inspired to act by the CJD-related death of a loved one. One such advocate is Theresa Matthews (pictured on a 2006 lobbying visit to Washington with her teenage daughter Mary and Illinois Senator Durbin and then Senator Obama). Patient advocates often raise worthy questions about issues surrounding CJD research. One such question is whether adequate epidemiological data on CJD is being collected in every state. Ms. Matthews informs me that currently there are eight states that do not require physicians to report CJD cases. She testified about this issue at a June 2009 meeting of the FDA's Transmissible Spongiform Encephalopathies Advisory Committee. Here's an excerpt from her testimony "Accurate disease reporting is a basic and fundamental step of epidemiology... This cannot possibly be done if you are not even counting the cases. The current state of CJD epidemiology in this country is a joke and it is no laughing matter."
Strong words. But Ms. Matthews makes a good point. Mandated reporting is the first step in reliable epidemiological research. Every state should mandate reporting of CJD cases, whether discovered pre-mortem or only at autopsy. Here are the states that fail to mandate reporting: Washington, Nevada, New Mexico, Iowa, Indiana, Alabama, Kentucky, and West Virginia. If you are a resident of one of these states, contact your governor or state legislator to get this situation corrected!