Good afternoon. Thank you for joining us today for the I-131 teleconference. The first portion of the call will be in moderation. During this time, only our panelists will be able to speak. Participants will be in a listening mode. The second portion of the call will be a question-and-answer format.

Please let me introduce our host speaker, Margaret Farrell, with the National Cancer Institute's Office of Communications. With her on the panel today are doctors Elaine Ron, David Becker, and Andre Bouville. I would now like to turn the call over to Ms. Margaret Farrell. Please go ahead.

Good afternoon, everyone. I'd also like to welcome you to the I-131 Public Education Campaign teleconference. I so appreciate you joining us today.

As the operator mentioned, my name is Margaret Farrell, and I'm with the National Cancer Institute's Office of Communication. As many of you know, for the past two years I've managed NCI's efforts to develop a public education campaign - I-131 exposure and potential thyroid cancer risk.

We are having a freezing rainstorm here in D.C. today. My colleagues are quick to point out that you had both snow and sleet at the original I-131 communications workshop. This said, I think we can all now appreciate the U.S. Postal Service's motto, "Through rain, snow or sleet, we deliver." Together we have delivered, and I want to begin this call by thanking you for your diligence and perseverance over the many years during which this issue has been researched and debated. Truly, due to your committed work, this issue has remained in the public eye, and that these materials are now available to better educate all Americans about the health consequences of the exposure to I-131.

We have work ahead of us still, but our efforts to date represent an unprecedented collaboration between advocates and the federal government in developing educational materials for the public. I hope that you're as delighted as I am with the quality of the communication materials that have resulted from our collaborative efforts.

I would like to explain the process for this teleconference. We will present information about the I-131 communication campaign for about fifteen minutes. Then we'll be available to answer any questions you may have about disseminating the I-131 materials and ensuring the campaign's success.

Since this teleconference is for you - the advocates - we'd really like to focus on the questions you have about dissemination and successful promotion of these materials. Questions are welcome from all participants, however.

I would like to advise any members of the press that may be on this call that the news release was released Monday, and now that it's after 12:00 p.m., the embargo is lifted and it is available on the NCI Web site at www.cancer.gov. The NCI Press Office will also be available during and after this teleconference to field questions from reporters and journalists. You can reach the press office by calling 301-496-6641.

Now I'd like to take a moment and introduce our speakers, who will further discuss the I-131 campaign.

Joining us from New York is Dr. Elaine Ron. Dr. Ron is the former Chief of the Radiation Epidemiology branch of NCI's Division of Cancer Epidemiology and Genetics. She is a committee member of the International Commission on Radiation Protection, and is an advisor to the United Nation's Scientific Committee on the effects of radiation. She has conducted extensive research on thyroid cancer and radiation. Dr. Ron and her staff at NCI have been instrumental in providing scientific guidance throughout the material development process, and I am very grateful for their time, insight, and guidance.

We also have with us Dr. David Becker. Dr. Becker is the Professor of Radiology and Medicine at Cornell University Medical College. He is the founder of the Division of Nuclear Medicine of New York Hospital, and was its director until 1996. Dr. Becker is actively involved in consultation in the diagnosis and management of patients with thyroid disease, particularly hypertension and thyroid cancer. His major area of research is on radiation effects on the thyroid. He's been a member of NCI's I-131 Risk Assessment Study, and has been chair of the working group on the health effects of the Chernobyl accident where he is now a member of the bi-national advisory committee.

Many of you are familiar with Dr. Becker, as he was a member of the original communications development group. As a member of the I-131 listserv, he contributed his expertise in helping to develop and shape several of our educational pieces.

Now I'd like to turn the teleconference over to Dr. Ron, who will further discuss the I-131 campaign. Dr. Ron:

Thank you. I, too, would like to thank everyone for your very important contributions to the I-131 public education campaign. Your input has been central to shaping both the direction of the campaign and also the individual materials developed.

As an epidemiologist, who has studied radiation and thyroid disease for close to three decades, I have learned how difficult it is to explain the many issues involved, and to reach consensus on how the information with all of its surrounding uncertainties should be presented.

Over the last few years, I've been working with several of my statistician and physicist colleagues at NCI on finding the right wording to clearly reflect the best and latest scientific information in a straightforward way. We have reviewed numerous versions of the materials, and have had many discussions on how to present the facts while still acknowledging the large uncertainties. We have made every effort to incorporate the thoughtful and helpful comments from advocates and community representatives, as well as from our public health colleagues.

Communicating information about risks to the public, especially radiation risks, accurately and effectively, is difficult. Fully describing the risks while not unduly scaring people is a hard balancing act. Explaining the pros and cons of thyroid screening is also very complicated in refining the dose calculator so that it is user-friendly. This has been a challenge.

All of these tasks have been made easier and far better due to your input. So I would like to, again, thank everyone, but especially the advocates, who have given thoughtful and insightful comments and suggestions to NCI. Your comments have been instrumental in the preparation of what I think is now the high-quality educational campaign that communicates important information about thyroid cancer to the public. So, again, thank you.

Thank you, Dr. Ron. Now we'll hear from Dr. Becker.

I would just like to say that on a day-to-day basis, I'm involved in treating patients with radioactive iodine, and discussing with them the impact of radio-iodine exposure. The people who we treat with radio iodine for hyperthyroidism and thyroid cancer face all the questions with which you all have developed, but usually they're getting a focused treatment dose, but they have the same implications. So we have to deal with the issue of making clear just what the risks are, as Dr. Ron has suggested.

These are treatment doses now, not incidental exposure, so there's a little difference in how this is approached and what kind of questions patients raise, but these are, again, difficult issues, and particularly with the information in the press today, not all of it is controlled and not all of it is defined. Lots of questions come up that must be dealt with, and we do make special efforts to let patients ask the questions. We give them information in advance, and we follow up with an opportunity for them to ask questions. So on a practical basis, we deal daily with the issues of patient/doctor interface and patient/physicist interface in the issues of radio-iodine and its use. Thank you.

Thank you, Dr. Becker. Again, I'd like to echo the sentiments of Dr. Ron and Dr. Becker, and thank all the advocacy groups, community representatives, and health officials for your wonderful input, which really was integral to producing the high-quality I-131 publications and the materials we are launching today.

We all invested significant time and energy in a very deliberative and iterative process, and while this process has resulted in our campaign being launched later than we had hoped, we now have truly excellent materials to offer.

I hope that you'll agree that the trade-off - investing a little more time into developing the best possible product - was worthwhile, and I'm hoping that our unprecedented collaborative effort will serve as a model for future public health education campaigns and similar initiatives that others may undertake.

Now that the I-131 materials are available for dissemination to the public, I'd like to take some time to review the tools we are providing and talk about next steps.

The hard copy materials designed for dissemination to the public via intermediary organizations such as yours, include brochures, a thyroid screen decision aide, and a slip chart presentation. I'm just going to walk through those and give you a sense of how we would envision you wanting to use them in your organizations and suggesting ways that your intermediaries might want to use them.

The brochure entitled, "Get the Facts about Exposure to I-131 Radiation," is the blue booklet, which provides historical background, general facts about I-131 thyroid disease and thyroid cancer, risk factors, and methods that doctors use to assess thyroid disease. This is basically the cornerstone or the overview piece of the whole campaign.

More in depth is the thyroid screening decision aids, "While Making Choices Screening for Thyroid Disease," and this is the gray booklet. The decision aid reviews some of the same material as the brochure, but provides additional facts, as well as a foldout worksheet to help readers assess their potential risks from exposure.

Anyone concerned about exposure to I-131 can use it to start an informed dialogue with his or her healthcare provider. Together the individual and the provider can determine potential risks and then consider their next steps.

"What You Need to Know About Thyroid Cancer," is the maroon booklet - good thing they're all in difference colors - was developed separately, but reviewed by the I-131 listserv last year. This book is part of an NCI series on different types of cancers, and discusses symptoms, diagnosis, treatment, emotional issues, and questions to ask a doctor. It also includes a very helpful glossary of terms and other resources.

The flip chart, "Radioactive Iodine and Thyroid Cancer," is currently at the printers, and will be available in hard copy in mid-January. However, it can be downloaded today off of NCI's I-131 Web page. This tool addresses concerns specific to Native Americans, and is a tool for healthcare professionals and community leaders to use to discuss exposure to I-131 with small groups of Native Americans, but certainly it would not just be limited to that audience. It's really designed to facilitate further discussion and education, and I'd like to thank those of you on the call who were particularly helpful with the Native American community in helping to shape this material.

Beginning today, you'll be able to order any of these publications by calling the Cancer Information Service at 1-800-4-CANCER, and this is the key piece of information: If you identify yourself as a program partner with NCI's Office of Communications on the I-131 project, you'll be able to order an unlimited quantity of publications for your organization's use and distribution.

Over the course of the next few weeks, NCI will be mailing packets of these materials to advocacy, community, and healthcare organizations. The mailing will include ordering instructions for organizations interested in receiving additional copies for dissemination to their constituencies. Hopefully, this will dovetail nicely with your own outreach efforts.

To help you in your own outreach, NCI has developed several tools to help with your dissemination. These include black-and-white public service ad flicks, which might be helpful in creating flyers, newsletters or other print publications, promotional brochures that outline the available material, and a sample press release that can be customized to reflect the role your organization played in the I-131 campaign. These materials can be ordered directly through me, and are also available on the Web page under resources for program partners.

I just got a note in the door saying that the Web site is now up, and as I indicated, both the public education materials and outreach tools can be downloaded from NCI's I-131 Web site. The direct link is www.cancer.gov\I131. You can also reach the Web page the way I do it by going to the main NCI home page, www.cancer.gov, and entering I-131 where it says "search."

We're very, very pleased that at least for the next several days, our site will be a featured link of the main NCI site, and we'll have a little text ad on the front page of cancer.gov. We're very pleased that we'll have this level of attention paid to this campaign on behalf of the Institute.

The interactive Web site also includes an I-131 PowerPoint presentation geared towards health professionals. This can both be viewed as a background piece or downloaded for your use in presentations or in classrooms. A pretty exhaustive list, I feel.

While today's launch of the I-131 campaign represents a major step in informing the public, much remains to be done. One piece that is nearing completion but is still under development is the revisions in the individual dose calculator. We are working closely with our contractor - many of you know Owen Hoffman also from his work on the communications development group - to refine the revisions to this tool. We hope to have the revised dose calculator posted on the Web site within the next few weeks.

On Monday, we will be conducting a usability test on the risk-estimated portion of this tool with a sample of healthcare professionals, advocates, and the general public, and we hope to have the final version of the risk portion available in mid-January.

As you embark on disseminating the I-131 materials, NCI will continue to maintain the I-131 fallout listserv to facilitate communication. The listserv will remain operational until the I-131 dose calculator is finalized. After that point, we hope that the NCI I-131 Web site will serve as the primary vehicle for ongoing communications and programmatic updates. And to ensure that the I-131 materials remain as up to date and as informative as possible, we will be conducting an ongoing evaluation of these materials, as well as monitoring the dissemination and distribution efforts underway, both at the Institute as well as in your organizations.

I hope that together we've answered your questions about the communication materials and dissemination tools available to you. In case we haven't, we now invite you to ask any questions you may have. The teleconference operator will tell you how to participate. Operator, can I have the first caller or start the Q&A session?

First we have Suzanne Neimeyer, a freelance writer. Please go ahead.

Margaret, I have a question for you. You had mentioned that the campaign involves unprecedented collaboration between advocates and the government. Could you elaborate on the nature of your collaboration?

Happily. I really can't emphasize enough the value of the input we received from advocacy groups.

We launched our collaborative effort January of 2002. Consumer advocates were key players in the workshop, where we also received input from physicians and scientists, concerned citizens, health department officials, and other government officials.

To keep communication open following the workshop, we've sponsored a public listserv dedicated to I-131 issues, and since its inception, advocates have been active partners through the listserv, and have also contributed thoughtful comments during the iterative process under which we wrote our I-131 materials. They've just been incredibly helpful with feedback, and we've really made every effort as much as possible to incorporate their suggestions. I think that the quality of the communications materials we're offering today is truly a testament to the value of our own unprecedented collaboration.

Sounds great. Thank you.

Next we have Robert Paxton with Western Kentucky Cancer Institute. Please go ahead.

What do you see as key to successfully getting out the materials about I-131?

About a year-and-a-half ago, many of our program partners submitted lists of organizations through which they wanted to see us make sure that we disseminated our materials, and we will be working primarily through those partners and through primary healthcare organizations in affected areas. But the continuing engagement of their advocates and other key intermediaries will be crucial to the success of our dissemination. I think that's one of the reasons why we're trying to have as many people involved as much as possible through this teleconference today, that people have a very good sense, materials are available, and that NCI make whatever resources we can make available to help you in your dissemination efforts.

Thank you. It's very helpful.

Our next question comes from Peter Rickards with PRV. Please go ahead.

I think they just meant that I was a private individual. I did want to expand this question a little, and I'm sorry for the vagueness or if I have the wrong term, but I was at a CDC presentation for the Hanford Study. They talked about blood work they had done on some of the downwinders. They didn't have an answer for this, so I wanted to ask the doctors if it rang a bell or what they thought, but it seemed as if 25 percent of the people showed up with what was called, I believe, a thyroid antibody or maybe an anti-thyroid antibody, and no one had an answer for what that represented. I wondered what is the norm for that, and also, does it indicate any immune system problems? Basically, there seems to be possibly another area to look into that wasn't mentioned, but I was curious with the doctors on the phone, if they had any comments about that profile in the blood work.

Thanks for you call. Dr. Becker:

I'll be glad to try to answer that. The presence of antibodies to various protein substances in the thyroid antigens is quite common, particularly in women. In some surveys that have been done in Scotland and in the United States, as many as five percent to 10 percent of people, who are considered healthy without specific disease, have thyroid auto antibodies. The implications of that are not really very clear. Presumably, this represents a process that we're measuring or noticing at some time in its course.

If the measurements of the antibodies get very high, it suggests that there is an active process which may lead eventually to what is called autoimmune thyroiditis or Hashimoto's thyroiditis, and this process may eventually - and it's a very long time course on that - lead to decreased thyroid function, and hypothyroid is a decreased underactive thyroid. It usually takes a long time for that to occur.

But many people have these antibodies. Again, a lot of people have other antibodies also, and these are somewhat interrelated in some kind of autoimmune process. It does not imply anything significant immediately going on, nor does it portend bad things happening, other than the fact that some of these people may eventually develop an underactive thyroid.

Thank you.

I understand from the operator that there are no other questions in queue, so hopefully, we've answered all the questions that you've had.

I did get an e-mail from a program partner who used to staff the I-131 campaign, saying that we're having a bit of a glitch with our Web site. We'll fix that later today, but you can get to the I-131 Web site by going to www.cancer.gov and searching under I-131. The Web site is up, but not all the links are active, so we will get that straightened out later today.

I want to thank you all so very, very much for participating in our teleconference, particularly Dr. Ron, Dr. Becker, and Dr. Bouville for being so willing and so generous with their time and their expertise. I'd like to thank all of you, again, for your tremendous support in shaping the I-131 education campaign.

Again, just to reiterate, to order additional copies of the materials, please call the Cancer Information Service at 1-800-4-CANCER. If you identify yourself as a program partner with the Office of Communications I-131 campaign, you'll be able to order unlimited quantities of materials. Our office will be subsidizing the rest of the cost.

If you need additional information about the I-131 campaign, you can call me directly at 301-435-7784, or reach me through e-mail or also on the listserve.

We will be posting a transcript and an audio file of this teleconference on the Web site within the next few days, probably by the middle of next week. You're also welcome to continue this discussion via the I-131 listserv.

Please remember that members of the public should be directed to call NCI's Cancer Information Service at 1-800-4-CANCER for more information. We're very fortunate that so many of the people who staff the cancer information services hotline were able to participate on the call today.

As mentioned, all the materials are available on the NCI's Web site, and additional links and resources for concerns to this instance are available there as well.

Thank you, again, so much for your commitment to this important issue and for your continuing support. It's really a pleasure to work with you and to work on this campaign. Thank you.

Ladies and gentlemen, this concludes the I-131 teleconference. Thank you very much for your participation and for using AT&T's Executive Teleconference. You may now disconnect.