Advocacy Alert - March 2000


Senators Reid and Specter Pin CDC Director on Diversion of CFS, Hantavirus Funds


1. CDC Scandal: Lively exchange at Senate hearing, by Roger Burns of CFS-NEWS 2. Statement by CFIDS Association President & CEO Kim Kenney 3. Help us thank Senators Reid and Specter


1. CDC SCANDAL: Lively exchange at Senate hearing


By Roger Burns, reprinted with permission from the CFS-NEWS e-mail newsletter. For a free subscription, send an e-mail message to: cfs-news-subscribe-request@maelstrom.stjohns.edu


In contrast to a U.S. House of Representatives hearing held on Feb. 10, a Feb. 29 hearing before a U.S. Senate committee was lively, and was difficult for the official being questioned, Dr. Jeffrey Koplan, Director of the CDC.


Several questions were posed to Director Koplan about the CDC's diversion of research funds and the adequacy of that agency's CFS program, but Koplan's routine answers were not accepted by Senator Harry Reid (D-NV) and subcommittee chairman Senator Arlen Specter (R-PA). Sen. Reid expressed astonishment that a CDC employee had told the Inspector-General that "It's a 'bigger crime' to follow Congress's direction rather than spend money where science dictates," as reported in the Washington Post and in other newspapers around the U.S. Reid said that that was virtually spitting in the eye of Congress, and asked how the CDC could keep such a person on its payroll. Director Koplan said he wasn't familiar with that employee and was unaware that such a statement had been made, so he couldn't respond specifically, but the quote given was antithetical to Koplan's own beliefs. Sen. Reid also said there were new reports that research funds for Lyme disease had also been diverted.


Sen. Arlen Specter bore in to Dr. Koplan during his own question period. Specter asked Koplan three times whether he had gotten more information from the Inspector-General's office than just the official report. The Senator further asked whether there were other diseases in addition to hantavirus and CFS that were involved in the diversion of funds, to which Koplan replied no. Specter also asked what disciplinary actions the CDC had taken. At first Koplan responded that there had been a re-assignment of one administrator. But under further questioning by Specter, Koplan later said that the re-assignment had nothing to do with a disciplinary action but was done only because that individual's talents were more useful elsewhere.

At the end of the hearing, Specter asked Koplan whether he had determined that false statements had ever been made about the CFS program. At that point, HHS Secretary Shalala intervened and said that the privacy laws which protect government employees prevent Director Koplan from answering that question. After consulting with Secy. Shalala in private, an apparently frustrated Senator Specter said he would defer his question for the moment, but that it would ultimately be answered in public, and if need be there would be an additional Senate hearing.


During the February 29th hearing, Sen. Tom Harkin (D-IA) said that he felt this entire issue was likely due to a misunderstanding and that no misstatements were made intentionally by CDC staff. Sen. Stevens outlined the need for improved coordination between the CDC and Congress.



2. Statement by CFIDS Association President & CEO Kim Kenney


SENATORS REID AND SPECTER LEAD CHARGE FOR FURTHER INVESTIGATION
INTO MISALLOCATION OF FUNDS AT CDC


CFIDS Association Head Kim Kenney Calls Feb. 29 Hearing "Productive"


The following is a statement from Kim Kenney, President and CEO of The Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Inc.


"I want to personally applaud Senators Reid and Specter for their determination to get to the bottom of the financial mess at the Centers for Disease Control and Prevention in Atlanta. Word that funds for diseases besides chronic fatigue syndrome (CFS) and hantavirus may have been misspent is especially troubling. I share the Senators' concern that the culture of arrogance at the CDC that led to the misuse of funds has not been appropriately addressed. I continue to hope that through our vigilance and that of Members of Congress we will soon have a CDC that can be trusted to spend money and direct research the way legislators intended."



CFS is defined as a debilitating and complex disorder characterized by profound fatigue, pain and cognitive problems not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS function at a substantially lower level of activity than they were capable of before the onset of the illness. Recent studies estimate more than 800,000 Americans are suffering from CFS today.




3. Help us thank Senators Reid and Specter


Please help us show our appreciation to Senators Harry Reid and Arlen Specter, who are holding CDC accountable for establishing a progressive CFS research program and providing accurate reports about its program funding and activities.


Please send thank you notes to:


Their addresses are:
The Honorable (first and last name)
United States Senate
Washington, DC 20510


Dear Senator (last name):


* * * * * *


Sample thank-you note text:


Thank you for your questions during the February 29 Labor/HHS Hearings about the diversion of chronic fatigue syndrome (CFS) research funds by the Centers for Disease Control and Prevention (CDC). As one of over 800,000 Americans with CFS, I am especially grateful to you for holding CDC accountable for establishing a progressive CFS research program and providing accurate reports about its support of CFS research activities.


* * * * * *


Thank you for supporting CFIDS advocacy efforts! As always, please contact The CFIDS Association and let us know to whom you wrote and what response you
received.


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