Opening and Introductions

The workshop was opened by Alan Rabson, M.D., Deputy Director of the NCI, and Mike Sage, M.P.H., Acting Deputy Director of the National Center for Environmental Health at the CDC. They charged the group with providing input to NCI and CDC in the development of a communications program that will 1) inform the public, and more particularly, the members of the public who are at high risk for health problems because of their exposure to radioactive iodine-131, and 2) educate health providers so they can provide appropriate care. The challenge will be to figure out how best to communicate the history, the science, and the possible health risks from exposure to radioactive iodine-131 from the Nevada Test Site. Dr. Rabson noted the active interest of the Department of Health and Human Services (DHHS), acknowledging the presence of Dr. William Raub, representing DHHS Secretary Donna Shalala.

Denise Cavanaugh, the workshop facilitator, reviewed the ground rules and desired outcomes for the workshop. She reiterated the desire to identify some common ground, to provide scientific background, history on the issue, and to discuss the communications challenges and strategies that might be employed in the campaign. Ms. Cavanaugh encouraged participants to use the listserv set up by NCI to interact and give additional feedback after the workshop. A handout was provided with directions on how to subscribe to the listserv. Ms. Cavanaugh also pointed out the Operating Principles drafted by the working group.

Overview and History

Mark Epstein of Porter Novelli, Washington, D.C., gave a brief overview of the history of the Nevada Test Site, referring participants to the Institute of Medicine (IOM) Report¹ and working group member Trisha Pritikin's document² for further details.

Robert Lawrence, MD, of Johns Hopkins University, and chair of the IOM Committee that reviewed NCI's report³ on I-131 dose estimates, offered a brief presentation of the IOM Report. He focused on the factors that contribute to individual dose estimates and the problems in making estimates due to geographic variation, dietary patterns, and individual susceptibility. He agreed that excess cases of thyroid disease were caused by radioactive fallout, but he asked whether trying to identify individuals who are at greatest risk and screening them would lead to greater harm than good. And so, the IOM committee took the approach "first, do no harm," in recommending against mass screening for thyroid cancer. He encouraged the group to work toward a communications program that focuses on shared decision making between individuals and their health care providers.

Trisha Pritikin, a member of the working group, brought the perspective of a citizen exposed to NTS fallout and environmental ionizing radiation emissions, including I-131, from the Hanford nuclear weapons facility. She noted that radioiodine is only one of a host of biologically significant radionuclides released during the NTS nuclear bomb tests. She asked that this I-131-focused campaign be followed by similar campaigns on other NTS radionuclides. She called for an appropriate government response to these involuntary environmental exposures. She also encouraged a discussion of government-sponsored screening for those at highest risk from their childhood exposures, as is anticipated to occur at an upcoming ACERER meeting.

Ms. Pritikin detailed the impact of radioactive fallout on her family, describing her illness and the death of both of her parents. She grew up in Richland, Washington, adjacent to the Hanford nuclear weapons facility. She called for estimates of cumulative exposures and risk, based on multiple radioactive exposures such as NTS, Hanford, and global fallout. She also called for discussion of all potential health outcomes, including thyroid cancer, autoimmune thyroiditis, hypothyroidism, hyperthyroidism, hyperparathyroidism, and other related diseases. She noted that screening for non-cancer outcomes involves a simple blood test, which has a different benefit/risk ratio than thyroid cancer screening.

At the completion of her presentation, Ms. Pritikin read from the written and oral transcripts of the Hearing before the Senate Permanent Subcommittee on Investigations of the Committee on Governmental affairs, citing Senator Tom Harkin's support for medical screening for those at highest risk from NTS I-131 exposures, and citing his disagreement with the recommendations against screening made by the IOM committee that reviewed the NCI I-131 report. Dr. Lawrence, chair of the IOM committee, responded by stating that he had spoken with senior members of Senator Harkin's staff regarding these IOM recommendations, and that those staff members then indicated that they understood why the IOM made the recommendations it did.

The Science of I-131 Exposure and Health

Charles Land, Ph.D., of NCI's Division of Cancer Epidemiology and Genetics, explained how NCI developed its estimates of exposure and explained why children were at higher risk than adults: children are more sensitive to radiation, their thyroid glands receive higher doses from ingested or inhaled I-131. They have a higher intake of milk (the main pathway of ingestion), and higher metabolism.

Steve Simon, Ph.D., of the National Research Council's Radiation Effects Research Board, described dose estimates. He explained how dose is calculated and described how uncertainty is factored in. He also showed a number of maps that showed the high exposure areas, or "hot spots," by birth year.

Both speakers described the complexity of estimating exposure and doses and the limitations of the sources of I-131 exposure information from the 1950s and 1960s, based on the time of year, weather patterns, cow grazing patterns, dairy management practices, etc. Dr. Simon explained the difficulties in coming to individual dose estimates, which rely on the accuracy of the person's memory of where they were and what they were doing during the testing. County-specific estimates already carry a high degree of uncertainty. Individual estimates are more uncertain, still.

F. Owen Hoffman, Ph.D., from SENES Oak Ridge, Inc., shared his perspective. He stated that, although the risk from exposure to iodine-131 is uncertain, it does not prevent us from estimating risk. The uncertainty can be quantified, allowing an estimated range of 8,000 to 208,000 excess cases of thyroid cancer due to NTS fallout. He suggested that most of the excess cases would occur in females who were children at the time of the testing and who resided in the eastern United States because that was where the population was most dense and where the most milk was produced.

Age, gender, and diet are more important determinants of risk than is location, said Dr. Hoffman. He also noted the need to bring together dose reconstructions from various sources of fallout to estimate cumulative doses. He also called for work to extend discussion beyond iodine-131 to other radionuclides in both NTS and global fallout.

Dr. Hoffman argued that health risk evaluations with regard to fallout should include more health effects than thyroid cancer, such as benign nodules and autoimmune thyroiditis. He also urged that other I-131 exposure sources and time periods beyond 1962 be investigated, including the underground testing era.

Dr. Hoffman also reported that there is now a more sophisticated method of calculating the uncertainty associated with dose estimates than what was used in the NCI on-line dose calculator. Calculations using the "Monte Carlo" method take into account the adding of uncertainties from disparate time periods, and result in smaller uncertainty ranges.

Public Health Communications Challenge

Elaine Bratic Arkin, a health communications consultant, defined health communications and social marketing, using a CDC definition: "the crafting and delivery of messages and strategies based on consumer research to promote the health of individuals and communities." Communications can prompt people to take simple actions, like call a toll-free number or make an appointment with a doctor. It can correct misconceptions, and it can coalesce relationships. She said that the campaign's challenges include the public's complacency (since these exposures happened decades ago), a media environment cluttered with health messages, and a very complex topic to convey to the public.

To be successful, the communications campaign needs to be planned, budgeted and supported over time, Ms. Arkin stated. It needs to be tracked and evaluated in case adjustments are needed. It may need to be part of a multifaceted program, coupled with provision of services and physician education, for example. She also described the components of a communications plan.

Table Discussions

Small group discussions following Ms. Arkin's presentation focused on two questions: what is the issue, and what one change might advance the effort?

Some of the issues and actions discussed:

• Lack of trust in the government
• The government must accept accountability for past events and future actions.
• The program should be comprehensive instead of separating nuclear fallout from mining, milling, production, waste, and weapons use. In other words, the public wants to know about isotopes beyond I-131 and exposures beyond Nevada Test Site.
• There are two public health issues here: the actual physical impact of exposure and the psychological stress induced in people by the exposure.
• How will we help people who are mobile and speak a language other than English understand the risk?
• We've got to make clear there was an impact, even if we are uncertain about the magnitude.
• There is a need to educate physicians so they will take patients' complaints and concerns seriously. If a doctor is honest and up-front, the patient will have less fear and uncertainty.
• Physicians must be contacted before a public campaign is launched. We need to get the attention of primary care physicians and get health care providers, such as HMOs, on board.
• It may be difficult to identify a credible source for the information, due to issues of mistrust.
• There are two components: a notification piece, to educate and reduce fear, and a call-to-action so that high-risk individuals will seek medical advice, which would include educating physicians to be prepared to respond. There also may need to be some kind of direct help for the affected citizens from the government.
• Give people a full view of their risk from a combination of sources.
• Give people the information they need about risk factors so they can determine their own risk level and then give them information on obtaining follow-up consultation or care, if needed.

Panel 1: Interest Group Perspectives

Working group member Seth Tuler, Ph.D., of the Childhood Cancer Research Institute and Clark University, moderated the workshop's first panel discussion. Dennis Nelson, Ph.D., of Support and Education for Radiation Victims (SERV), described the lifestyle of the downwinder population near the Nevada Test Site to give a sense of the downwinder's exposure. He argued against focusing exclusively on I-131 and cancer and called for a national plan to notify people throughout the country so that they could look into their own exposures and seek early detection.

Maureen Eldredge of the Alliance for Nuclear Accountability described her organization's relationship with the government on nuclear weapons issues as a pattern of deceptions and cover-ups. She stated that the government has an obligation to tell the public that they were involuntarily and unknowingly exposed, regardless of how low the exposure or how minimal the health risk. She suggested also looking at all thyroid disease, not just cancer, and helping people figure out their cumulative doses so they have the full picture of their exposures. It is not up to the government to decide what information people should or shouldn't have because they might make a bad decision with all the information. People should make their own decisions about their health care. Lastly, she said that we should be aware of the impact of money. She said the government might be fearful of providing information out, as people who were exposed may sue the government, whether or not they suffered any ill consequences of exposure. She said the government should pay for the communications, the training and education of health providers, and perhaps even for treatment.

Tim Takaro, MD, of the University of Washington, represented Physicians for Social Responsibility. In his experience with Hanford, the people in the Northwest want to know about their families' illnesses. They want to know if they are at risk, whether they should be tested and whether their children may be affected. He noted the importance of cumulative doses and called for looking at exposure from mining through weapons disposal. At the same time, physicians don't need to get an accurate dose on a patient to address concerns about risk for certain diseases based on their exposure from Hanford, NTS, and others. He noted that screening large populations with no restrictions is not cost effective, but that screening should not be denied a person who is concerned about his health and the impact of radiation exposure. Physicians will need to address patient anxiety, which in itself is a psychological and physiologic burden.

Robert Holden, of the National Congress of American Indians, discussed the history of the relationship between the Federal government and native peoples, stating that the government has a responsibility, based on treaties, to provide for Indian health and welfare. Many Native Americans had multiple exposures. For example, uranium was mined on Navajo land and a national laboratory sits on Pueblo land. He noted that there are certain protocols to communicate with tribal officials. He stated that he hopes that the Native American community can continue a relationship with those planning this campaign to help them better understand Native Americans. He suggested a Native American caucus to work on these issues.

F. Lincoln Grahlfs, Ph.D., is an atomic veteran representing the National Association of Radiation Survivors. He described his experience educating Congress that nuclear radiation is hazardous and getting the word out about the NCI report. His group's media work got tremendous response in areas like St. Louis, Missouri, and Idaho Falls, two "hot spot" areas identified in the report. He warned that special interest groups might try to sabotage efforts to educate the public on issues of radiation exposure and health risks.

Mike Hansen, Ph.D. represented Jean Halloran from Consumer's Union. From his background working on advocacy issues on pesticides and genetically engineered foods, he stated that the government will have to do a few things to gain credibility: 1) take a comprehensive view, broader than I-131 and all potential health effects, 2) provide as much information as possible, and 3) admit the government was wrong. Even if the risk is small, the public will get upset at risks that were involuntary, that they had no control over, and that were done to them without their knowledge. The government will need to be up-front about what happened and how much they don't know. They'll need to work with grass-roots organizations and those advocacy organizations that are critical of the government in order to make the campaign successful. The process will be difficult, but important. He suggested working with Consumer Reports magazine to write an article on this topic. Dissemination would be widespread, with a readership of 4.8 million subscribers in their 50s and 60s.

Seth Tuler ended the panel by discussing the findings of the ACERER's subcommittee for community affairs. 1) Federal efforts to address the public health consequences of NTS fallout are still inadequate. 2) Difficulty identifying specific fallout injuries does not absolve the Federal government of its responsibility to shape a meaningful public health response. 3) Research is not a public health response and is not a substitute for the assistance that many exposed people believe that the government has a responsibility to provide. 4) Delays in sharing important public health information about fallout exposures have reinforced public cynicism toward federal officials.

He then reviewed the ACERER's recommendations. 1) Fulfill the legislative intent of Public Law 97-414, which mandated NCI's study of I-131 NTS fallout. 2) Complete a comprehensive dose reconstruction project for NTS fallout, with an oversight committee created to keep things on track. 3) Notify Americans of the factors that might help them determine if they received significant radiation doses from NTS fallout, targeting high-risk groups. 4) Create a public and health care provider information service. 5) Support an archival project to document the experiences of exposed people. 6) Further evaluate screening opportunities for thyroid disease.

He finished by summarizing the common themes heard during the panel discussion.

• The legacy of mistrust
• Identifying who is at high risk and providing more to them than mere notification
• Empowering people to make informed decisions about their health care
• Addressing fears versus creating fears
• Covering multiple exposures and contaminants
• Overcoming political resistance to implementing programs.

The final panel on the first day of the workshop included health professionals and gatekeepers. Kevin Teale, of the Iowa State Health Department, moderated. He began by pointing out the challenge the group faces in trying to get a message about this complex topic out to the broadcast media, which relies on four-second sound bites. He also raised the issue of getting the public to pay attention to the risk, when they already don't pay attention to some of the big health risks like smoking or weight control.

R. Michael Tuttle, M.D., from Memorial Sloan-Kettering Cancer Center, is a practicing thyroid specialist. He treats patients with thyroid disease, many of whom already ask him about radiation exposure and their disease. He sees a big challenge in translating excess relative risk, radiation dosage, and other relevant technical jargon into something meaningful to tell a patient. The program will have to help physicians define who is high risk and help them discuss risk in a way that makes sense to their patients, which may vary by geographic location and cultural background. Give physicians a strong scientific rationale for determining whether a patient is at risk or not.

Henry Royal, M.D., of the Washington University School of Medicine, was a member of the committee that wrote the IOM Report. He contrasted the public health perspective, which shows that thyroid cancer accounts for just 3% of all cancer deaths, with the personal, devastating perspective of a family member dying of thyroid cancer. He advocated allocating limited health care resources where they can have the greatest impact to reduce premature deaths. He acknowledged the difficulty in taking this view when individuals are dying of thyroid cancer, but shifting public health resources to a program that would have a small public health impact would cause others to needlessly suffer the tragedy of premature death.

Delvin Littell, M.D., of the Morgan County Medical Center, adjacent to Oak Ridge, Tennessee, encouraged the group to work with the organizations of community health centers, clinics that reach low-income individuals. In particular, he noted that the migrant labor movement might offer a resource of particular use with people who don't trust "the system." He also advised that communicators keep in mind how they would like to be treated when developing messages and strategies to reach the public.

James Flynn, of Ph.D., Decision Research, talked about risk communications, explaining that the messages developed for this campaign will be going to people who will receive them within the context of suspicion of nuclear technology as well as their personal experiences and preformed judgments. These factors will affect the way they receive and respond to the messages.

Kristin Shrader-Frechette, Ph.D., of the University of Notre Dame, provided a medical ethicist's perspective. Two things she says have gone wrong with risk communication about radiological hazards are: the tendency to present scientific opinion as if it were fact and the tendency to make covert ethical judgments as if they were scientific judgments. She used the example of the IOM report recommending against mass screening because of the benefit to harm ratio. That's a value judgment that takes away individual rights. In a democracy, people have the right to know, the right to compensation, to due process, and to self-determination. People have the right to make mistakes for themselves. Lastly, she stated that, to communicate in a credible way, the government will have to state that this will not be repeated. People are willing to forget the past if we can assure them that what they went through in the past is not going to happen again. Deciding about screening is not just a scientific issue, it is an ethical issue and several members of the public should be involved in the decision making. She recommended using the 1996 National Research Council report, Understanding Risk: Informing Decisions in a Democratic Society, as a way to improve risk communication and involve the public in a meaningful way. She also argued that the government is obligated to take responsibility and spend health care dollars on this issue, even if it involves diseases with small public impact because the government is accountable for the radiation fallout and its impact.

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