DISCLAIMER The following is a staff memorandum or other working document prepared for the members of the Advisory Committee on Human Radiation Experiments. It should not be construed as representing the final conclusions of fact or interpretation of the issues. All staff memoranda are subject to revision based on further information and analysis. For conclusions and recommendations of the Advisory Committee, readers are advised to consult the Final Report to be published in 1995. TAB I þþþDRAFT þ FOR DISCUSSION PURPOSES ONLYþþþ MEMORANDUM TO: Members of the Advisory Committee on Human Radiation Experiments FROM: Advisory Committee Staff DATE: November 8, 1994 RE: Update on Cincinnati Small Panel Meeting -- October 21, 1994 The following is a report on the small panel meeting in Cincinnati, Ohio on Friday, October 21. The three Committee members present at the meeting were Reed Tuckson, Mary Ann Stevenson, and Lois Norris. The hearing opened with testimony from Congressman Rob Portman (R-OH), who spoke of his concern about the Total-Body Irradiation (TBI) experiments, particularly whether patients were clearly informed based on the standards of the day and whether they were part of a study that was not based on necessary treatment. Additional panelists can be roughly divided into four categories: (1) family members of patients involved in the University of Cincinnati TBI experiments; (2) veterans or family members of veterans who were involved in nuclear testing and cleanup; (3) workers or family members of workers who received radiation exposure while working at the Department of Energy (DOE)/the Atomic Energy Commission's (AEC's) gaseous diffusion plant in Portsmouth/Piketon, Ohio and the uranium processing plant in Fernald, Ohio; and (4) experts, academics, and attorneys who have been involved in these cases in either a professional capacity or as a citizen advocate. A list of the speakers is attached. Transcripts of the meeting and the interviews are being transcribed, and will be available shortly. I. THE UNIVERSITY OF CINCINNATI TBI EXPERIMENTS Relatives of TBI patients spoke to the panel about the physical condition of the patients following irradiation and about the issue of consent. The family members claim that many of the patients may not have been as seriously ill as Dr. Saenger claims. While all had advanced cancer (indicated either by the presence of metastatic or locally advanced disease) and thus could be considered "end stage" in terms of unlikely curability, they were clearly not all "terminal" in that family members reported some of the patients feeling well enough to carry on normal activities of daily life (e.g., holding down jobs, caring for children) until the day of the TBI administration. Family members claim that the patients were not fully informed that they would be totally irradiated, nor were their spouses and children informed. Some told of consistent lack of communication from physicians regarding the purpose and procedure of the radiation treatments. This occurred despite multiple and persistent requests by family members to meet and discuss these concerns with the doctors involved in administering these treatments. In subsequent years, family members say, they have encountered enormous difficulties in obtaining complete medical records. They have been told that records were destroyed or lost, and some say they have been denied access to certain records. Joseph Steger, President of the University of Cincinnati, also testified. He acknowledged that some records have not been found and were likely lost or destroyed, but asserted that the families have been given all records that have been found. II. MILITARY PERSONNEL AND FAMILIES EXPOSED TO ATOMIC WEAPONS TESTS AND CLEANUP This group of speakers were either active military personnel or families of personnel who were ordered to do clean-up work on various nuclear test-sites. Two veterans were able to provide documentation showing subsequent developments of malignancies (Leslie Lynch, skin cancer; William Cummins, multiple myeloma). Others reported that they were suffering from a variety of somatic complaints which they felt were secondary to their past irradiation exposure. Mr. Cummins' malignancy was recognized as a radiation-related illness and he has received disability payments from the Department of Veteran's Affairs (VA); Mr. Lynch has been denied VA disability, presumably because of difficulty distinguishing between ultraviolet radiation (secondary to excessive sun exposure) versus ionizing radiation as the causative agent of his skin cancer. Mr. Cummins also noted that even though he has received disability payments from the VA for his radiation disease, which is multiple myeloma, the VA refuses to list it properly in his records, calling it instead a "blood condition." The result, he notes, is that the VA's statistics are not accurate and deliberately undervalue the number of veterans with radiation-related cancers. III. OCCUPATIONAL EXPOSURES Speakers from this group testified to having had to work with radioactive material in a civilian capacity while employed by DOE or AEC contractors at the Piketon gaseous diffusion plant and the Fernald uranium processing plant. Owen Thompson recalled decontaminating blown pipes at Piketon. Diana Salisbury talked about a 1978 Uranium Hexaflouride spill at Piketon involving 2125 pounds of radioactive material. Vina Colley said she had worked with radioactive water spills at Piketon, and was then fired as a whistleblower. She said that the company falsified records, and that some of her medical samples at a local hospital were missing. She informed the Committee of the existence of a the group Portsmouth/Piketon Residents for Environmental Safety and Health (PPRESH). There is a similar group in Fernald, Ohio, called FRESH; Lisa Crawford testified as the Director of FRESH. Several of these speakers also said that their disability claims with the AEC were sent by the AEC to Dr. Saenger to review to determine if their sickness was caused by radiation exposure, and that Dr. Saenger ruled that it was not. Gene Branham, an official for the Fernald local of the Oil, Chemical and Atomic Workers, talked about the DOE's tissue sampling program (so-called "body-snatching"). The workers say they have not been given access to any of the data and that bodies and organs have been taken without consent. Branham said that the DOE has never acknowledged, much less talked with workers about, this program. He noted, however, that in 1981, the DOE attempted to negotiate with workers to pay for their bodies upon death. The workers rejected the proposal, but the program still exists. He spoke of having to stand guard over the body of one employee, and sending it to a foreign country for a "nuclear autopsy," to prevent DOE officials from seizing it. He also noted that the workers recognize the value of doing worker studies, but oppose the DOE program because there is no consent and because the workers do not get access to the information. IV. OTHERS Various persons spoke who were not personally affected by radiation research. Lisa Crawford, Martha Stephens, Joseph Steger, David Thompson, Jackie Kittrell, and Geoffrey Sea fall into this category (see attached list for affiliation). Jackie Kittrell, with the American Environmental Health Studies Project, urged the Committee to hold a small committee hearing in Tennessee to hear about the Oak Ridge work and to hear from possibly 200 Vanderbilt University patients. As noted above, University of Cincinnati President Steger offered to work closely with both the patients' families, and with the Committee. In his testimony, Steger stated that the university had been forthcoming, and had provided all documents in its possession. However, the President offered to speak with anyone having problems, and to place the university's resources behind the project. Geoffrey Sea, with the International Radiation Injury Survivors, challenged Henry Royal's characterization of the two 1972 reports that supported the Cincinnati researchers -- the Ad Hoc Faculty Committee Report and the American College of Radiology (ACR) Report. In particular, Mr. Sea stated that the ACR report was biased because Dr. Saenger was a leading member of the ACR.