LYMEPOLICYWONK: My presentation to TBD Working Group

Lyme patients take a lot of heat, frankly too much heat. Sometimes reporters make errors, don’t have enough facts, and aren’t fully informed. And that is rough. But it is even rougher when reporters are informed and given the correct information and then ignore half of it. So what do you do? Well, CALDA has written the Chicago Tribune protesting the highly biased reporting in its December 8, 2010 article on Lyme disease. We have asked them to publish an Op Ed piece by CALDA. We believe that reporters have an ethical obligation to report on stories in a balanced manner. They also owe it to patients to set out both sides of a scientific debate. To do otherwise, puts the lives and health of thousands of sick people in danger. What do you think? If you are interested in supporting this effort, please write the Tribune (emails below). Ask them to publish an Op-Ed by CALDA to set the record straight. A tip of the hat to Ellen and the NYC Lyme Activism group for their wonderful work on this project. More information after the jump. . .

The broad debate about the role of consumers in health care policy is important to the Lyme community. However, many of the things that have harmed Lyme patients, powerful unresponsive medical societies with conflicts of interest, the patients’ lack of voice in the process, and access to care limitations should concern every patient, regardless of the disease. An important article on patients and their skepticism for evidence based medicine appeared in Health Affairs this month. (“Evidence That Consumers Are Skeptical About Evidence-Based Health Care”). Ray and I responded to the article with an eletter, “Consumer Acceptance Depends on Whether Guidelines Reflect Patient Values”, which is published with the article. Links can be found after the jump.