A fascinating series on new radiation treatments for cancer patients by New York Times reporter Walt Bogdanich caught my eye for two reasons.
First, because he bases his reporting--showing that there have been hundreds of people injured, some fatally, by these new technologies, even as so many are also saved--in part by wresting accident report and other records from federal, state, and city government sources. In other words, via government data.
And second, because the week before his first story appeared, my mother underwent such treatment for a benign brain tumor, a meningioma, that was growing back nearly 15 years ...
FDA’s transparency effort has new features, old content
FDA Holds Back Information on 9 of the 25 Most Prescribed Drugs
Extent of Lobbyist Contributions Remains Unknown
The National Journal recently launched a new “lobbyist and advocacy” blog, which gathers together 60 experts from some of Washington’s... View Article
Continue readingToo Little, Too Late
The following appears in the National Journal’s new “lobbying experts” blog launched last week. I will be posting there regularly.... View Article
Continue readingHow Transparent is Your Turkey?
The government collects terabytes of data on food—from safety to marketing to subsidies—funded by taxpayers and consumers. But that does not mean this crucial information is available to you online and in real time so you can actually do something about it.
Continue readingResearchers propose real time analysis of drug safety data
Ferreting out safety problems with prescription drugs sooner–such as those that plagued the popular pain medication Vioxx–could be possible if... View Article
Continue readingGillibrand Touts Transparency
Sen. Kirsten Gillibrand of New York said today that the final version of health care legislation will be available for... View Article
Continue readingSt. Jude Medical Quits AdvaMed
In a dispute on strategy over proposed medical device taxes in current health care legislation, St. Jude Medical Inc. has quit AdvaMed, the major medical device trade association in Washington.
The group played a key role in lobbying Congress to keep certain clinical trial data secret, as detailed in Sunlight's recent "Heart of the Matter" multi-media investigation. The investigation tells the story of Bray Patrick-Lake, 39, who participated in a clinical trial sponsored by St. Jude Medical, and later found out she could not access the data collected.
Continue readingDrug Co Reps Say Clinical Trial Data Should Remain Secret
Two out of three of the panel participants at today's Food and Drug Administration (FDA) transparency hearing discussing whether data for unapproved drugs and medical devices should be made available to the public were pharmaceutical industry representatives.
As we reported in our investigation, Heart of the Matter, drug and medical device companies lobbied Congress to keep data secret for government-regulated clinical trials for products that don't make it to market.
Now the issue is before the agencies. An audience of about 75 people listened as the panel members discussed detailed case studies about whether and when the FDA or companies should make data available to the public. (The hearings were available via livestream here.) For the most part, drug industry representatives stuck to the same arguments they made to Congress--that such data are proprietary and should remain secret.
Continue reading
59063
