I just emailed the following to Rep. Conyers. He'll never see it but a staffer might.



Mr. Conyers-

First, let me make it clear that I have come to appreciate you and your efforts to curb the past administration in particular. Please consider this to be an email from a friend.

I am, however, a concerned friend and suspect that you have been misled. A man doesn't build a lengthy record of service such as yours without being aware of the public interest and the political "weight" of a given issue. HR 6845 is an issue with far more such weight than would be apparent at first look and I hope to convince you to reexamine the advice that you have been given thus far. I assume that you have had no shortage of input from the business interests who stand to profit from the proposed changes. And I am certain that there has been some objection from scholars and researchers, albeit disorganized. It is a third group that I wish to make you aware of whose voice is only now being raised. A relatively new creature, it has been best described as the "E-Patient", the patient who uses the Internet to educate himself about what he faces in the management of traumatic or long term illness and, increasingly, to use the skills that come with using the Internet for such a serious purpose in order to advocate for his interests with both doctors and governmental representatives.

I am such a patient, having been diagnosed with Parkinson's Disease (PD) in 2000. PD is a mysterious disease of unknown cause and no cure. Symptoms can be relieved for a time, but only that. Or so it would seem if one is limited to the popular press and what my neurologist learned in school twenty years ago. However, if one takes the time to dig deeper, one can learn much about PD and how to manage it. About how to buy time and what research lines are showing promise.

Parkinson's Disease is just one of dozens of conditions which have a strong E-Patient community. For example, I belong to an electronic forum called "Neurotalk" where E-Patients meet to compare notes, support one another, and just talk. That site has over 15,000 members discussing forty different conditions!! Fifteen thousand people on just one site. And every one of them relies to one degree or another on NIH and its Medline database for information.

I speak for a lot of people when I say that I would be lost without it. And, I must be honest about it, I would be angry as well. Not only for the impact upon my life and being condemned to die in ignorance when I would choose to struggle in the light of the latest knowledge, but also because of the injustice inherent in these publisher's plans. After all, they can solve their problem for the most part simply by refusing any involvement with tax dollar funding. Let them publish their privately funded studies without relying on taxpayer funding of any sort and see how long they last. They are trying for the cake and dessert at the same time and they are hoping to do it at both my expense and yours. We both have far more important fish to fry at this point in time.

I ask that you reexamine this issue and withdraw HR 6845.

Thank you,
Richard H. Everett
Maryville, TN
(Represented by the Hon. John Duncan, Jr. - one of the few Republicans to cultivate a spine over the last eight years)