Disability Rights Nation

Nov. 16-30
From Ragged Edge's
D. R. Nation department Nov./Dec., 1998

Lack of braille signage prompts suit


Scientist Blows Whistle on Research Monies
Insider Alleges Funding Earmarked for Chronic Fatigue Syndrome
Used to Bolster Other Research Projects

by Leye Jeannette Chrzanowski

Where has all the research money for chronic fatigue syndrome (CFS) gone? Not to CFS research, according to Dr. William C. Reeves, the scientist responsible for CFS research and the chief of the Centers for Disease Control and Prevention's (CDC) Viral Exanthems and Herpes Virus Branch.

In a statement submitted to the U.S. Inspector General, members of Congress and the Department of Health and Human Services (HHS) and released on July 22, Reeves alleges CDC has deceived Congress and the public about CFS research money. He has filed for protection under the Whistleblowers' Protection Act, a federal law that protects civil servants from retribution when they report government fraud, waste or abuse.

"I believe that CDC has intentionally misrepresented monies allocated to CFS research and I cannot ethically support this," wrote Reeves in his three-page statement. "The misrepresentations involve systematically charging between $400,000 and $2 million incurred by unrelated activities to CFS between 1995-97 and reporting to HHS, Congress and patients that the monies were used for CFS research."

Just a few weeks after Reeves submitted his testimony, the CDC's Procurement and Grants Office ordered all CFS research stopped on a $400,000 project involving federal scientists, university-based re-searchers and a contractor. The study was designed to provide better estimates of the number of adolescents in the U.S. who have CFS. This research would have been the first of its kind and unless the funding is quickly restored, the project will be delayed until the year 2000. Study scientists were told that overspending in other programs contributed to the decision to disapprove the $400,000 needed to begin the CFS research.

An estimated 500,000 people in the U.S. have CFS which is also known as chronic fatigue and immune dysfunction syndrome (CFIDS). Ever since CFS was recognized as a public health concern in the mid-1980s, Congress has urged federal health agencies to allocate more resources to investigate it. The major public health agencies have reported to Congress a 400-percent increase in CFS spending over the last six years. But Reeves' recent allegations raise questions about the amount of money actually spent on CFS research.

Reeves says that in 1997, he told his supervisor Dr. Brian Mahy, chief of CDC's Division of Viral and Rickettsial Diseases, that the actual expenditures for CFS research were $2.8 million, significantly less than the $3.4 million CDC was planning to report. Despite Reeves objections, Mahy allegedly told Reeves that the $3.4 million in direct CFS research costs would be released. Earlier this year, Acting CDC Director Dr. Claire Broome reported to Congress that CDC had allocated $5.8 million for CFS and that $3.4 million would directly support research in Reeves' branch in FY 1998. But Reeves says his entire branch funding in FY 1998 was less than $3 million.

At a meeting on August 4, 1997, Reeves says he and five others were told by Mahy's administrative officer that Mahy has repeatedly used CFS funding and other similar monies to make up deficits in other areas. According to Reeves, at the end of FY 1997, Mahy's administrator withdrew some $340,000 to cover other programs but reported the money actually was spent on CFS research.

Reeves also alleges that in past years funding earmarked for CFS research was used to fund personnel in other branches; management and professional services; and laboratory fellowships. On the last day of FY 1996, $1.2 million of laboratory equipment and supply costs incurred by the Measles and Polio Eradication Programs were charged to CFS research, reports Reeves.

K. Kimberly Kenney, executive director of The CFIDS Association of America, Dedra S. Buchwald, M.D., an associate professor at the University of Washington and Anthony S. Komaroff, M.D., a professor at Harvard Medical School and editor-in-chief at Harvard Medical Publications Division, are members of the DHHS Chronic Fatigue Syn-drome Coordinating Committee, which Mahy co-chairs. The three recently wrote to Donna Shalala, secretary of Health and Human Services, asking for restoration of the $400,000 for the research project.

"Our response to this particular situation is that we are aware of allegations made by an employee regarding incorrect reporting of chronic fatigue syndrome research expenditures to Congress," says Tom Skinner of CDC╣s Media Relations Office. "The agency is taking these allegations very seriously and has asked the HHS Inspector General to conduct a review, which is already underway." For more information about CFS, contact The CFIDS Association of America, Inc. at (800) 442-3437 (voice) or http://www.cfids.org (Internet)

© Copyright 1998 The Disability News Service, Inc.



Lack of braille signage in hospital
prompts suit by P&A in Maryland

The Maryland Disability Law Center is suing the Greater Baltimore Medical Center for violating Title III of the ADA by its "failure to provide Braille and raised print or raised numbers on all signs which designate permanent rooms and spaces, exits and stairways" and failing to place signs in accessible locations. It was filed on behalf of Philip Guntner and William Poole, who are both legally blind; the move was taken after repeated efforts to get the hospital to resolve the complaints failed, says MDLA. The suit does not ask for damages. It is "part of a statewide campaign to enforce and publicize the requirements of Title III of the ADA, covering places of public accommodation," said the MDLA in a news release. THE MDLA is part of the protection and advocacy system of Maryland.

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