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Plenary Session

INTRODUCTIONS TO THE SYMPOSIUM AND FOR REPRESENTATIVES OF THE AMERICAN SOCIETY OF CLINICAL ONCOLOGY AND THE INSTITUTE OF MEDICINE

Ellen Stovall, Vice Chair, Committee on Cancer Survivorship: Improving Care and Quality of Life; and President and CEO, National Coalition for Cancer Survivorship

Good morning. My name is Ellen Stovall, and I am a 34-year cancer survivor. I am president of the National Coalition for Cancer Survivorship (NCCS) and one of the editors of this wonderful report that we are here today to celebrate. I want to begin by thanking the American Society of Clinical Oncology (ASCO) for sponsoring this wonderful symposium today.1 We would not be here today without the efforts of many of the people here today. Looking at you all fills me with great joy and a sense of extraordinary accomplishment. So, thank you.

I want to introduce our first two speakers today, Dr. Sandra Horning and Dr. Fitzhugh Mullan. Both of them are cancer survivors. Dr. Sandra Horning is Professor of Medicine, Oncology and Blood and Marrow Transplantation, at Stanford University. She is also the president of the American Society of Clinical Oncology, and a great friend to all of us in the community. Dr. Fitzhugh Mullan is a dear friend, and the architect of our 20-year-

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The symposium agenda can be found in Appendix A.



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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium 2 Plenary Session INTRODUCTIONS TO THE SYMPOSIUM AND FOR REPRESENTATIVES OF THE AMERICAN SOCIETY OF CLINICAL ONCOLOGY AND THE INSTITUTE OF MEDICINE Ellen Stovall, Vice Chair, Committee on Cancer Survivorship: Improving Care and Quality of Life; and President and CEO, National Coalition for Cancer Survivorship Good morning. My name is Ellen Stovall, and I am a 34-year cancer survivor. I am president of the National Coalition for Cancer Survivorship (NCCS) and one of the editors of this wonderful report that we are here today to celebrate. I want to begin by thanking the American Society of Clinical Oncology (ASCO) for sponsoring this wonderful symposium today.1 We would not be here today without the efforts of many of the people here today. Looking at you all fills me with great joy and a sense of extraordinary accomplishment. So, thank you. I want to introduce our first two speakers today, Dr. Sandra Horning and Dr. Fitzhugh Mullan. Both of them are cancer survivors. Dr. Sandra Horning is Professor of Medicine, Oncology and Blood and Marrow Transplantation, at Stanford University. She is also the president of the American Society of Clinical Oncology, and a great friend to all of us in the community. Dr. Fitzhugh Mullan is a dear friend, and the architect of our 20-year- 1   The symposium agenda can be found in Appendix A.

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium old survivorship movement and the founder of the NCCS. He is the Murdock Head and Professor of Medicine and Health Policy and Professor of Pediatrics at George Washington University. I am delighted to introduce them both here to you today. INTRODUCTORY REMARKS Sandra Horning, President, American Society of Clinical Oncology Thank you. It is a distinct pleasure for me to be here as ASCO president, and as a cancer survivor, to introduce today’s symposium. As you know, the purpose of the symposium is to convene the stakeholders, you, who are committed to the care and the quality of life of cancer survivors, so that we can discuss the findings of this report, present the challenges that are outlined, and develop action plans to realize the recommendations. ASCO is clearly committed to cancer survivorship, and we have made a lot of progress in the last year.2 First of all, an expert panel was convened by my predecessor, David Johnson, also a cancer survivor. This ASCO Survivorship Task Force is co-chaired by Patricia Ganz and myself. Members of the task force participated in the planning of today’s symposium. Our charge was to fully integrate survivorship into the activities throughout ASCO and all of its committees. We are also currently discussing partnerships with primary care societies in joint educational activities. Survivorship is one of three major themes for the 2005-2006 ASCO year. It is very prominent in our member communications and is displayed prominently in our logo. And there will be concentrated sessions on survivorship and visibility of these issues at the 2006 annual meeting. Some of our accomplishments in the areas of education and science include providing a permanent home for survivorship in our patient and survivor care track. This means that we have, and will continue to recruit, individuals with an interest and expertise in survivorship to populate both of our committees. Our educational sessions at the 2006 meeting will include among others, Dr. Ganz talking about the development of a survivorship care plan and Dr. Lois Travis (NCI) talking about assessment of the risks of secondary cancers. We feel that having this permanent home in our scientific programs will help us to attract and promote survivorship research on a permanent basis. We have also begun to integrate survivorship into the core curriculum for oncology fellows. 2   For more information on ASCO’s survivorship activities, see its November 7, 2005, press release in Appendix B.

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium ASCO members are working as we speak on guidelines that relate to cancer survivorship. These include the areas of fertility preservation; hormone replacement therapy; bone health; cardiovascular late effects; neurocognitive and psychosocial issues; as well as second cancers. In the area of communications ASCO sponsored a Meet the Expert media event in December of the past year, and held a press conference in May that was dedicated to cancer survivorship and the research presented at the 2005 annual meeting of the society. The coverage, both press and national broadcast media, on survivorship research presented at our last annual meeting was extensive. And our award-winning peoplelivingwithcancer.org web site has featured survivorship stories. There will be ongoing chats with survivorship experts. And we have shared content with the Lance Armstrong Foundation. Cancer survivors, as we all know, number 10 million and are growing strong. My professional interest in lymphoma and Hodgkin’s disease results in my seeing a lot of cancer survivors. My mother is a cancer survivor. I am a cancer survivor. I am clearly in great support of the work that all of you have done over these many years, culminating in this comprehensive report and call to action. Cancer survivors need to be found, and their needs must be met. I know you look forward, as I do, to a very productive day. Thank you for your attention. INTRODUCTORY REMARKS Fitzhugh Mullan, Member, Institute of Medicine Thank you, Sandra, and thank you, Ellen. It is a pleasure to be here. Survivors say that at the opening of meetings with a particular verve. It is really good to be here. I am a 30-year survivor of a primary mediastinal seminoma. I am also an IOM member, and I would like to extend a welcome from the IOM. It is a wonderful place, both intellectually, institutionally, and architecturally. The IOM has served the nation fabulously well in its ability to take issues, mediate them, broker them, raise them to new levels of evidence-based visibility, and put them on the national stage. And that this is being done with survivorship by dint of this committee and this report I think is just fabulous. My own reading of the report, which I was fortunate to have the opportunity to do before today, From Cancer Patient to Cancer Survivor, is that it is a monumental piece of work, both for the science and the public policy that it brings to the fore, and for the fact that it takes issues that many of us have been grappling with for many years in happily lessening obscurity, but obscurity to begin with, and puts them between two hard

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium covers and out into the public policy stream in a far more potent way than has ever happened before. So, it is terrific. My story was that one day in 1975, I took my own chest x-ray, because I had been having some funny feelings, and put the x-ray up on the viewing screen, and I didn’t know what it was, but I knew what I saw didn’t belong there. It was big and it was ugly, and it led to a return to Washington, treatment at the National Naval Medical Center, radiation, chemotherapy, surgery, and a pretty hellacious course of events over the next couple of years. I was fixated then on the question of would I live, as everyone is, and when would I know that I would live, when would I be cured? And it was that intellectual and spiritual struggle that sort of brought to my attention the fact that while I wasn’t dead, happily yet, I wasn’t alive in the way I had been before, at least not at that point, whether it was in the ICU tubed up, or back at home sort of struggling along 30 pounds down, with radiation burns and an uncertain future. I was surviving, and although the survivorship concept was with us, it was used in the context of Holocaust survivors and airline crash survivors, but not to refer to this purgatory or this period of time following the diagnosis of cancer. The term “survivorship” was used, but not in the cancer lexicon. As I cast about for help or guidance or counsel, there was little in that regard. I found many people who were struggling with this both personally as survivors, and professionally as oncologists, oncology nurses, physicians, social workers, and counselors. Although the idea began to percolate in my mind, and certainly others understood it, it was then a fairly amorphous phenomenon. And in the 1985 paper, “The Seasons of Survival,” I wrote about it (Mullan, 1985). I went back and re-read it just this week, and just to quote a couple of things: “Despite the success on the treatment front, we have done very little in a concerted and well-planned fashion to investigate and address the problems of survivors. It is as if we had invented sophisticated techniques to save people from drowning, but once they had been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all that we can.” And then later on, “Survivorship should be studied as a phenomenon in itself, rather than as a byproduct or afterthought of basic research on cancer treatment.” And I really am delighted that the work of this committee, and the work in this report, has raised those concerns to a new level and given them a new poignancy. And this isn’t to say that in between 1985 and 2005, there hasn’t been a great deal of accomplishment in this area, but today’s report is really a high-water mark for that. Now, it is a victory, and it is terrific that it is here. You could argue it has been a long time coming. Certainly, the survivors in the world, or the

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium survivors in the room might say, yes, but couldn’t we have gotten here quicker? And one could sketch out a phenomenon or scenario where that might have happened. I do think particularly speaking to the research community, but also to the clinical community, we tend to focus particularly as researchers or clinicians on victories. You want to win. You want cures. One wants cures, and certainly patients do, too. But the world view, the environment, intellectual, clinical view that is thereby created is one of victors. And we celebrate victors. Lance Armstrong has perhaps done a better job than anyone in doing that, and that is good. But there is the reality that many of the victories in cancer are encumbered by ongoing issues: uncertainty as to outcome; compromises as a result of therapies; psychosocial issues; et cetera, that we know well and are well documented in the report. Developing and supporting clinicians, research scientists, and support system personnel who really see as their mission in life a very rigorous set of activities, whether they are clinical or investigative with survivors, is really a change in the paradigm, or it is an addition to the paradigm, and happily that is coming. But I do think the natural proclivity to look for victory is both to be respected, and also to be looked askance at, or to be at least challenged. You’ve got to remember it isn’t just a question of pulling them out of the water. But you get them on the dock. Are they going to stay on the dock? And are they going to have a reasonably civil time on the dock, or is it going to be hellacious while everybody turns their back on them and goes back to pulling somebody else out of the water? Without pushing the metaphor too far, I think that this is really a mission. I would like to credit the NCCS, and Ellen in particular, for keeping survivorship on the agenda. And if it has taken arguably 20 years from the birth of the NCCS to today’s report, which really puts this, as I say, in the national pantheon of topical issues, both medically and socially, it has been a hard forced march, and Ellen has been at the front of the column for most of that time, leading to this effort. So, I think it is a real salute to her and to all the organizations in cancer care, including ASCO, but the NCCS has been on message week in, week out over those two decades. A couple of words about Lost in Transition, the report. I think that subtitle is great. I will remember it as Lost in Transition more easily than, From Cancer Patient to Cancer Survivor. Three recommendations I think stand out, and given a couple of moments at the podium, I just want to take the opportunity to hit those home. The survivorship care plan concept, an individualized roadmap for each survivor, ought to be part of what we do clinically, and what people into survivorship encounter. It is terribly important. Just to pause for a moment, the late Peter Jennings, as we know, had a difficult and rapid downhill course with lung cancer. And you probably noted, that on the day

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium he announced his cancer, he said, “I am a survivor.” Actually, the quote in The Washington Post was, “I’m told I’m a survivor,” which meant he had to learn that this is a concept. But that that concept had gotten that far I think is a credit again to people in this room, both the clinical and the patient community that have pushed this idea, and gotten it to the newsmakers of America, even though they take a little instructing at that moment. And his survivorship was short, but the concept was there, and I think that is important. And while I don’t know the intimate details of it, I suspect it was useful to him. But the notion that Peter Jennings and every one of us ought to have a survivorship care plan I think is just a terrific idea. Survivorship research is a “gimme” in IOM reports—they always say there should be more research, and once again, we have said that. I think that is true, underline, exclamation point. The issues of long-term outcomes, of secondary effects of second tumors, which Dr. Horning has been particularly involved in personally herself, really need to be high on the agenda of cancer research. And I say that as a customer of cancer research and cancer care. I have not recently examined the figures, although I did at one point, and the amount we spent on what would be characterized as survivorship research was a pittance compared to what we spent trying to move ahead on more cures and more heroic rescues. It is good work, but we also have to look at the survivorship side. And finally, what is not a gimme in all reports, although the IOM happily has had a number concerning it, is the issue of universal health insurance coverage. I could not leave this podium without hitting that home. There was a figure in the report stating that 11 percent of adult cancer survivors under age 65 do not have insurance. Nationally, 15 percent of the population does not have health insurance. And if you exclude the Medicare-eligible population, who virtually all have insurance, it is almost 18 percent of the population under 65 that are uninsured. I do not understand why cancer patients have a higher rate of insurance. But whether it is 11 percent or 18 percent, it is a bunch of folks. If it is the 18 percent, it is almost 1 in 5, and this presents a problem beyond being diagnosed with cancer. Being diagnosed with cancer now in an environment rich in interventions, rich in therapies, and even rich in a word I do not always use, cures or at least extended survivorship, and yet lacking the ticket to get into that care, that is a huge problem. I had the opportunity in one of my other lives as a journalist to interview Senator Connie Mack when he was still in the Senate. Senator Mack, as you perhaps know, is a survivor himself, and has multiple family members who had cancer, and was a real champion in the Senate for cancer funding, cancer research, cancer support. He also was a fairly outspoken opponent of healthcare reform, expanded coverage in various ways. And I put that question to him. I said, on the one hand you have been terribly

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium articulate and very effective in generating support for cancer therapies and for new treatments, and for getting people saved. And yet, we have this orifice, this huge, gaping hole in our national tapestry of care called the uninsured, which lots of cancer patients fall into. And yet, you are not seemingly exercised about that. As a survivor and the champion of survivorship, doesn’t that strike you as something that ought to be at the top of the agenda. And he answered in a fulsome way. He said, “Well, I hear what you are saying. But I am concerned that if we go to more governmental interventions in the field of healthcare coverage, it will discourage innovation. That if we get involved, it will mean more regulation, and the very productive research sector and the drug industry and so forth in America will be discouraged and will not continue to be as productive as they have been.” And essentially, you could boil that down to saying that a move towards equity will kill off enterprise. I think he would agree that is essentially his argument. And that is a holdable position. That is an arguable case. I happen to think it is wrong, and I also happen to think that it is a formula for continued unfairness, and continued suffering. And certainly, from the perspective of cancer patients, that is a real issue. Cancer patients whatever their views are—right, left, or center; Democrat or Republican—when they get diagnosed and do not have health insurance coverage, have a huge problem. And we have a huge problem as spokespeople for them and for that area. So, universal coverage, and you can color it or brand it whichever way you like, has got to be front and center on the agenda of survivorship in cancer, and I am delighted that it is in the report; one more good point in a great report. Thank you. A SHORT VIDEO PRODUCED TO ACCOMPANY THE IOM REPORT AND ILLUSTRATE ITS FINDINGS AND RECOMMENDATIONS WAS SHOWN (IOM, 2006a) INTRODUCTION TO THE PLENARY SESSION SPEAKERS Sheldon Greenfield, Director, Center for Health Policy Research, University of California, Irvine I am Shelly Greenfield, co-chair with Ellen Stovall of the IOM committee that issued the survivorship report. I am a primary care internist. There were four of us with a primary care focus on the committee amongst the people with various backgrounds, a testimony to the wisdom of the IOM in the recognition that survivorship is a truly integrative process, for which coordination of the various aspects of care is important. Before introducing

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium the panel, I want to thank the members of this committee and its staff. I have had the privilege and honor of being associated with many IOM committees over the past 10 years, and I will say that I have been on no committee or participated in no committee in which the members have been as diligent and as emotionally engaged as this committee. I am not going to introduce the speakers this morning. You know them. I might ask them to say for outsiders, a word or two about themselves. Ellen has already introduced herself. So, we will just ask them to come forward. We will ask each of them to try to confine their comments to 15 to 20 minutes. We will have a few questions afterwards, and hopefully there will be a little bit of time after everybody has spoken for more general questions. MEETING THE NEEDS OF CANCER SURVIVORS—RECOMMENDATIONS FROM THE IOM Ellen Stovall, President and CEO, National Coalition for Cancer Survivorship Thank you, Shelly. I would like to begin with a brief history. Almost everyone in this room knows about some of the landmark events that informed this report. But to let you know how this all got started, it began with changing the language of the words “victim” and “patient” to the word “survivor” in 1985, when Fitzhugh Mullan wrote his landmark article in the New England Journal of Medicine (Mullan, 1985). The term “survivorship” existed nowhere in the medical literature in 1986 when the NCCS was founded. It was a term of art only. You couldn’t find any references to it in any journal articles. Today, thankfully, it is a term of science. In 1989, Natalie Davis Spingarn, one of the early founders of the NCCS, crafted the Cancer Survivor Bill of Rights, which laid forth many of the principles that are embodied in this report, including the survivorship care plan. The NCCS’s Imperatives for Quality Care, published in 1995, we very proudly note led to the establishment of the Office of Cancer Survivorship at the NCI in 1996. We wanted a division, we got an office. And in 2003, the Centers for Disease Control and the Lance Armstrong Foundation brought many of us in the community together to create a national action plan on cancer survivorship, taking cancer survivorship into the public health arena (CDC and LAF, 2004). In 2003-2004, the President’s Cancer Panel did a series of reports on cancer survivorship that have continued to inform us (President’s Cancer Panel, 2004a; President’s Cancer Panel, 2004b). The IOM’s survivorship report’s origin can be traced to 1999, when the National Cancer Policy Board at the Institute of Medicine issued its report,

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium Ensuring Quality Cancer Care (IOM, 1999). Among the report’s many findings was that “for many types of cancer, answers to basic questions are not yet available, for example, how frequently patients should be evaluated following their primary cancer therapy, what tests should be included in the follow-up regimen, and who should provide follow-up care.” The 1999 quality report spawned several other reports: a 2003 report, Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM, 2003), which my friend and colleague Susan Weiner and Maria Hewitt shepherded through the IOM; a 2004 workshop report, Meeting the Psychosocial Needs of Women with Breast Cancer (IOM, 2004), and the report that we are now seeing here today. The IOM committee that Shelly referred to is an outstanding group of wonderful colleagues and now friends. I am going to ask them just to stand briefly and be acknowledged by all of you. Those that are here today, if you would just stand so people can see you. The committee started out by identifying who we are calling cancer survivors; about 3 percent of the population in this country and 15 percent of those 65 and older are survivors. Our report concluded that they are often lost to follow-up by oncology and primary care physicians. They are lost to follow-up through our healthcare systems, and they are grossly understudied by the research community. Successes in treating cancer and the aging of the population will bring us more and more cancer survivors as the years go forward. The charge to the committee was to raise awareness of the consequences of cancer, to define quality care and outline strategies to achieve it, and to recommend policies to improve care and quality of life. The 17-member committee was referred to earlier. It included oncology and primary care physicians, people in urban and rural practice in this country, and people devoted to clinical and health policy research. We met three times over the gestation period, as I call it, to birth this baby, and we heard from lots and lots of outside experts, as the IOM process is exquisitely formulated to do, bringing forth the best and the brightest people in any one specific area of science. The committee at its outset decided to accept the NCCS and the NCI definitions of a cancer survivor. Accordingly, an individual diagnosed with cancer is a survivor from the moment of diagnosis and for the remainder of his or her life. For purposes of this report we chose to focus on those we felt were most neglected, who fall off the cliff, and who are lost to follow-up, and that is those who have completed their primary treatment and are not being treated for a recurrence of their cancer (or a relapse) and are not receiving end-of-life care. In its findings, the committee concluded that the negative consequences of cancer and its treatment are substantial and underappreciated. And al-

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium though the population is heterogeneous with some experiencing few late effects of their cancer, many, many more suffer permanent and disabling symptoms that impair their normal functioning even when their initial primary cancer treatment has been excellent. Psychological distress, sexual dysfunction, infertility, impaired organ function, cosmetic changes, and limitation in mobility, communication, and cognition are among the many problems faced by cancer survivors. And the survivors’ health, as we all know, is forever altered. And the good news out of this report is there is an awful lot that we can do to ameliorate these conditions. We also found that survivors may be very unaware of their risk. The public lacks an awareness of cancer’s effects and assumes that survivors have a plan for their follow-up. Shelly was telling us the other night that when he discusses the report’s findings with people, they just can not believe that survivors would not be told what to expect or what to do following their diagnosis, but it is, in fact, the case. And so, opportunities to intervene when these consequences occur may often be missed. We have not tested models of survivorship care that are out there. And we know that the whole system of cancer care, not just this phase, suffers from an absence of coordination. The committee made ten recommendations. Simply and most importantly, we recommended that awareness of the needs of cancer survivors be raised; that cancer survivorship be established as a distinct phase of cancer care; and that responsible parties act to ensure the delivery of appropriate survivorship care. Awareness needs to be raised for both healthcare providers and for the general public. It is common now for cancer patients to finish their treatment unaware of their risks. They are therefore, ill prepared to manage their future health needs. Oncologists exhibit wide variation in their follow-up practices, and primary care providers often lack up-to-date knowledge on survivorship. To overcome the problem, the committee recommended that all patients completing primary treatment be provided with a survivorship care plan, and Patti Ganz is going to go into much more detail in the next presentation, so I will not elaborate on that. Survivorship care planning is not a new recommendation. It has been called for by the President’s Cancer Panel (PCP, 2004b), the Centers for Disease Control and Prevention, the Lance Armstrong Foundation’s Action Plan on Survivorship (CDC and LAF, 2004), the NCCS’s Imperatives for Quality Cancer Care (NCCS, 1996), and many, many other groups. The committee’s third recommendation calls for the development and use of clinical practice guidelines. Some guidelines are available for certain aspects of survivorship care, but most are incomplete and not based on solid evidence. Cancer survivors represent a very large at-risk population, and without evidence-based clinical practice guidelines and quality-of-care

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium indicators healthcare providers will continue to vary widely in their practices. More than 60 percent of cancer survivors are aged 65 and older, so the Centers for Medicare & Medicaid Services, the administrators of the Medicare Program, have a stake in the development of clinical practice guidelines and quality-of-care measures. Because cancer is a complex disease and its management involves the expertise of many specialists often practicing in different settings, cancer illustrates well the quality chasm that exists within the U.S. healthcare system overall, and the need for health insurance reforms and innovations in healthcare delivery. Several models that are promising for delivering survivorship care are emerging, including collaborative shared care models that formally link oncology specialists with primary care providers, nurse-led models, and specialized survivorship clinics. Our fifth recommendation calls for demonstration programs to test these potential models for survivorship care. The report’s sixth recommendation calls for congressional support for the Centers for Disease Control and Prevention and states to develop, implement, and evaluate comprehensive cancer control plans that include consideration of survivorship care. Recommendation number seven calls for the NCI, professional associations, and voluntary organizations to expand and coordinate their efforts to provide educational opportunities to healthcare providers to equip them to address the health and quality-of-life issues facing cancer survivors. Few oncology and primary care professionals have formal education and training regarding cancer survivorship. With the growing ranks of cancer survivors at 10 million strong today, it is likely that additional health personnel will be needed, particularly nurses with advanced oncology training. To insure access to psychosocial services, continuing education opportunities are needed for social workers and other mental health providers. In addition, efforts are need to maintain social services in cancer programs. Most cancer patients who worked before their diagnosis continue to work, but they often require some kind of accommodation. As many as 1 in 5 of us who worked at the time of diagnosis have cancer-related limitations in ability to work one to five years later. Half of those with limitations are unable to work at all. All survivors are at risk of experiencing subtle, although not necessarily blatant, employment discrimination. Federal laws enacted in the 1990s have offered cancer survivors some protections from discrimination such as firing or denial of benefits because of cancer. Our eighth recommendation calls for employers, legal advocates, healthcare providers, and others to act to minimize adverse effects of cancer on employment while supporting cancer survivors with short-term and long-term limitations in their ability to work. Recommendation nine calls on federal and state policymakers to act to ensure that all cancer survivors have access to adequate and affordable

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium actually help us to move forward to improve quality of life and the quality of care for cancer survivors. The first priority for new research is assessment of late effects of cancer and its therapies. Here, there is a need for some basic, clinical, and epidemiologic research, looking at the prevalence and risk factors of cancer late effects and cancer treatment late effects, as well as their mechanisms, because understanding those factors will help us to move forward in terms of improved and more targeted care. That then needs to be translated into improved guidelines and assessment tools, and understanding which interventions are best applied to reduce symptoms and improve functioning for cancer patients. And I think what is important about the research recommendation here, as you will see as I move through my slides, is that it is really a cross-cutting recommendation that draws on and advances many of the other nine recommendations in our report. A second major priority for new research is improving quality of care. And this draws on three other recommendations in our report addressing the survivorship care plans that Dr. Ganz has discussed, the quality indicators that Dr. Winn has discussed, and the coordination of specialty care and primary care. At the same time, we can address the issue of resources and trying to do things more efficiently and effectively. We need to understand from a research perspective, which care models and surveillance strategies are the most effective and which are the most cost effective, so that we can use resources and help the maximum number of people with the resources that we have available, while at the same time pushing for a greater investment of resources in these areas. Improving quality of life, as a third area of priority, moves forward in several dimensions in terms of our seventh recommendation regarding educating healthcare professionals. We not only need to develop programs to educate professionals, but to also involve our colleagues who are experienced educational researchers in studying which of those educational programs are most effective. From my perspective, one-time continuing education courses will only set the stage. We really need to build some mechanism for ongoing education and continuous learning into our training programs of health professionals, as well as for health professionals in practice. We need to understand what works in terms of making them effective providers for cancer survivors. We need to understand the factors that facilitate return to employment following cancer treatment, drawing attention to our eighth recommendation. What types of programs, from a research perspective, help people to return to work, and work effectively? We also need to understand the financial burdens that cancer patients face. I had the opportunity to serve not just on this committee, but on the Institute of Medicine committee addressing the consequences of uninsurance that concluded its work last

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium year after issuing six reports on the topic. And what was very interesting to see in our own committee’s discussion about cancer survivors is this intersection of priorities from previous IOM reports such as the consequences of uninsurance, with the special needs of cancer survivors. Cancer survivors are a high-risk, high-need group who are vulnerable in terms of the financial burdens of treatment costs and their potential limited ability to work. We need research to assess what we can do to ensure that people have good quality insurance and access to appropriate services. Enhancing support for family caregivers is a hidden topic that is just beginning to get more attention and research. We need to think of cancer survivors not just as individuals, but as members of families and households and communities. We need to support the cancer survivor and, in addition, address the physical and psychological needs of people providing care to loved ones. And finally, there is that whole domain of research that could pursue the role of legal protections such as the Americans with Disabilities Act, the Family and Medical Leave Act, and the Health Insurance Portability and Accountability Act (HIPAA). All of these legislative actions create both opportunities as well as potential risks for cancer survivors in terms of how they navigate the healthcare system, the insurance system, and the employment system. And we need to understand how those legal protections are working for cancer survivors. What are some mechanisms to expand survivorship research? As a committee, we came to the conclusion that one of the most important mechanisms is more attention to long-term follow-up of enrollees in clinical trials. What I would suggest is thinking of cancer survivors with forethought, instead of afterthought in our research agenda. Here we have a group of people who have already committed themselves as willing participants in research to help us understand more about the acute treatments for cancer. They are an underutilized or untapped resource for understanding the long-term effects and the ways that we can improve their care and quality of life. And I would venture that many participants in clinical trials would be very willing to participate in survivorship studies going forward if we made those opportunities available to them. Another important resource is special studies in our various national registry programs including the Surveillance, Epidemiology, and End Results Program supported by the National Cancer Institute, the National Program of Cancer Registries, supported by the CDC, and the National Cancer Database, supported by the American College of Surgeons’ Commission on Cancer. All of these registries have been designed to count people who are diagnosed with cancer, in some cases to understand their acute treatment (initial treatment within four months of diagnosis), and then potentially to track whether they survive. With targeted investment, each of these re-

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium sources could do a much better job of following people after their acute treatment, and really provide a foundation of opportunity for studying cancer survivors’ quality of care and quality of life experienced after the initial treatment period. Within the cancer registries, a special focus needs to be on cancer recurrences. Right now, many cancer registries track whether people survive or die, but do not have the resources needed to track whether they develop a recurrence of their initial cancer, or develop a second cancer. There are opportunities through links to Medicare data and electronic data from health plans and other organizations to understand the whole domain of cancer recurrence in much greater detail. We also have large cohort studies and research networks in place that could be used to further survivorship research. One that I am actively involved with is the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS). We have enrolled nearly 10,000 patients with colorectal cancer and lung cancer. We are supported by the National Cancer Institute and the Veterans Administration to study this group’s health care and outcomes in the first year after diagnosis. With further investment, it represents a great opportunity to study what happens to people after that first year of living with cancer. The Cancer Research Network is another resource funded by the National Cancer Institute. It is a consortium of health maintenance organizations around the country that have large enrolled populations, and the ability to track with electronic data systems who is developing cancer, and what happens to them over time. We also have practice-based research networks supported by the Agency for Healthcare Research and Quality that typically involve networks of primary care practices around the country that are willing participants in research. These networks are advantageous because they have a connection to the community and could move cancer survivorship, which is now largely in the domain of comprehensive cancer centers, out to a broader array of delivery settings, all of which have a very important role to play. Most cancer survivors are treated in community-based practices, not in comprehensive cancer centers. Finally, our committee felt that national surveys have an important role to play in furthering the survivorship research agenda. Our federal government has made a strong investment in collecting health-related data on a representative cross-section of Americans through surveys such as the National Health Interview Survey, the Medical Expenditure Panel Survey, and the Behavioral Risk Factor Surveillance System. In some cases, there is great opportunity to focus on cancer survivors, identifying who they are in these national samples, and then developing modules to learn more about their quality of life and quality of care. We could get a much more representative understanding of how people are living with cancer through such surveys. The committee also identified challenges in survivorship research. First, we need to recognize that long-term follow-up is labor intensive and expen-

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium sive. It will require investment of resources, but we believe that the dividends paid by those investments could be substantial. It is also challenging because many studies are multi-institutional in nature, and thus require multiple institutional review boards (IRBs) to approve them and monitor them, often with widely varying standards. Consequently, there is a role for the federal government to help the research community to develop more common standards for IRBs. One particular IRB could potentially be designated as a coordinating IRB for multi-institutional studies. There may be models for this in the world of clinical trials, and we also need to develop them in the domain of survivorship research. Finally, we have continued to grapple with HIPAA standards over the past two years. There is a lot of uncertainty among patients, family members, and healthcare providers about the privacy of medical information, and how privacy can be assured in the context of research. In some cases, there has been an overreaction by community practitioners, leading them to defend their medical records and to be very cautious about releasing them for research. We need to educate both patients and providers about the value of research. With appropriate confidentiality and privacy protections we need to partner with hospitals and community-based practitioners to gain access to medical records in a way that is compliant with HIPAA, but not stymied by HIPAA. To conclude, cancer survivors’ needs must become a research priority. This is a clarion call from our report today. Research is essential to improve quality of care and quality of life for cancer survivors. It is not something that can be done on the side. Instead, it is really a central springboard to addressing many of the issues that we have been talking about today, and will continue to discuss. We need to better understand how quality of care and quality of life should be measured, and how they can be improved in practice. The research agenda that we are addressing today would advance multiple recommendations in the IOM report. Finally, there are opportunities to build on the existing infrastructure that we have with new federal support focused on an expanded role for clinical trials, cancer registries, large cohort studies, and national surveys. We have the building blocks in place. Now we have to make them work for cancer survivors so we can improve their care and quality of life. Dr. Greenfield: We have some time for questions for John, and then for the rest of the speakers as well. Dr. Anna Meadows: I want to thank you for putting research in such an incredible perspective in terms of the rest of the report. I only wish the research chapter had come at the beginning of the report, because I think everything follows from that. I have been doing research in cancer survivorship for 30 years, and I was a part of the Childhood Cancer Survivor Study

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium in the beginning. This large cohort study requires an enormous amount of resources to follow. I was also recently part of the development of guidelines for the Children’s Oncology Group, so I know it is important to have consensus for guidelines. One of the problems that I see in both the Childhood Cancer Survivor Study and the development of guidelines and the way to provide clinical care is that unless we really have guidelines that we know are not just based on the consensus of opinion of people who take care of patients, but are truly developed from research that we can conduct, then the care plans that we give to patients are almost touchy-feely. How often do you do cardiac studies in patients who have had anthracycline? And what is the dose of anthracycline that requires that you do such studies twice a year, rather than once a year? These are questions that need to be addressed with research. And unfortunately, not putting the research first, really misses the point. The other problem is that when we do the research, or will do in the future, if we do not follow all the patients, we will not get the right results. We have been missing at least half of our childhood cancer survivors in our research studies, and we do not know about the other half of this cohort. We started with 20,000 eligible patients in the Childhood Cancer Survivor Study, and we are down to 10,000 now. Admittedly, these were patients who were treated a long time ago, but we do not have information on their outcomes. So, I really think that the thrust for research is so important, again, I am surprised it was not the topic for the first chapter. Dr. Ayanian: The chapter on research is the final chapter of this report, but we should also think of it as the first chapter of our work going forward. That is what our committee has tried to lay out in the agenda today. Dr. Beth Kosiak: I am from the Agency for Healthcare Research and Quality, but this comment that I would like to make is coming more as a stage 3 melanoma survivor. And what I would like to say is that one of the issues that came up for me in looking at the excellent research agenda laid out on cancer survivorship is how critical that research agenda is for informing newly diagnosed patients. Because as a newly diagnosed patient, you want to know what happened to people who chose different courses of treatment, because often times, as in my case, there is not an obvious course of treatment that is clearly recommended by the clinical community. And because they are divided, then you have to look at your own choices, and look for resources to make a choice. Having the information that you would get from the cancer survivorship research focus would really help newly diagnosed patients make that choice, because there would be that longitudinal information to help them look at what happens if I do nothing,

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium which was one of the choices that was offered to me. So, again, there are a lot of other comments that we will be able to make later in the day, but I just wanted to note that it really closed the loop for me, and I think it is an important aspect of the research. Dr. Jerome Yates: I am from the American Cancer Society, and from my perspective one of the real difficulties in looking at the research agenda is the intersection of the physical factors such as the disease stage and the treatment selected, and the social factors such as age, where people live, and access to health care. These are so complex, that they are going to require many, many analytic compartments. And this means that we have to use information systems to better advantage to sort out the information, and also to develop accessible educational materials that may be available. Just to follow-up on what Anna has said about the loss of the children to follow-up, in my former life at a cancer institute we provided free follow-up for the children for as long as they came back to the institution. The further out they get from their initial cancer, the more unlikely they are to come back, even if you provide them with transportation when it is needed, and the other things to encourage follow-up. The last comment I would make is that we have to do something about litigation because there are opportunities for lawyers to sue for things that we know were not known at the time of treatment. This raises real difficulties for the physicians. The classic case of this is the retinal changes with oxygen in the young children, and the recent Vioxx (rofecoxib) story are just two examples of how we cannot afford to not do something about the litigation issues. Dr. Greenfield: If I might just respond to the legal issues that Dr. Yates brought up. These legal issues are why Rodger Winn’s slide about the different organizations agreeing and not agreeing about guidelines is so very important. If there is an overwhelming consensus, if you will, about doing or not doing something as we have seen in diabetes and some aspects of heart disease, it blunts a lot of the potential for litigation. Let’s have general questions for any member of the panel now. Dr. Archie Bleyer of Cure Search, the LIVESTRONG™ Young Adult Alliance, and the Children’s Oncology Group: The survivorship care plan is a place to start. Dr. Greenfield asked earlier about resistance to implementing the care plan. The video was superb, the presentations were outstanding, and the report speaks for itself, but I wonder about a potential downside. Dr. Winn has described the cancer care trajectory, and Dr. Ganz has shown in Figure 2-4 the shaded box representing survivorship care. We now recognize the box. This conceptualization takes the patients or survivors out of

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium the trajectory from the oncologist, puts them into a different sphere, and then probably takes the survivor back to the oncologist with a recurrence or later in life. Although I support the survivorship care plan, are we turning this care back to the generalist, to the primary care providers, including two of our panelists, a little too quickly? Is the “hand off,” the term used in the video, too abrupt, too definite? Will we use the survivorship care plan as oncologists to close the book, as Patti put it, write the final chapter, and turn the patient over to that shaded box? As a pediatrician, that is not what we have done. So, I am worried about that potential downside. Dr. Ganz: I would like to comment on a few things. Number one, ASCO’s Cancer Prevention Committee did a survey, and we actually asked medical and radiation oncologists and surgeons who care for adult cancer patients about whether they cared for cancer survivors. The vast majority, 60 to 70 percent, of these providers said that survivors were a major part of their practice and that they provided many aspects of routine care for them. So, in fact most oncologists, at least in this survey, said that they were providing survivorship care. Isolating and defining that shaded box in the care trajectory, does not specify how care is to be delivered. It just says that it is a phase in the care trajectory. And as you will hear later from other discussions, one of the models applicable to survivorship is a shared model of care. Many practice according to this model. For example, I continue to follow all of my breast cancer survivors. I have patients that I have taken care of for 15 to 20 years. I see them once a year, so I am not attending to all their interim health care needs. These patients have primary care physicians that feel very comfortable approaching me if something comes up in relation to their cancer history. There was no intent in discussing the survivorship plan to convey a cessation of treatment by the oncologist. When I mentioned “closing the book,” I was referring to getting closure on the acute phase of treatment. There is a beginning and there is an end of acute treatment. And we need to summarize what went on in between, and that is what the retrospective part of the plan includes. But the perspective of the rest of the plan is really looking forward. And as I discussed in quite a bit of detail, it is defining who is going to do what in that follow-up plan. What is the oncologist going to do? What is the primary care physician going to do? What is the nurse practitioner going to do? What is the social worker going to do? So, I think you may have seen it in that way, but I do not think that was our intent. Dr. Winn: Let me just chime in. Archie, I think the model you describe is a failed model that pervades in medicine. It is a linear model of hand offs and no feedbacks, et cetera. I think what we really are talking about here is a parallel model with interconnections between the parallel streams, and that

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium is the only way it can work. I think one of the most exciting things from the IOM’s point of view may be in cancer taking the lead in trying to show other chronic disease models how, in fact, you should be coordinating this care moving forward. Ms. Stovall: At the end of the process of completing the committee’s work I had some conversations with IOM staff and fellow committee members about what was next. And the NCCS made a decision to sponsor a workshop next spring to show what it would take to bring people together to implement this care plan and answer a lot of the questions that have been raised. There are a lot of recommendations that are intended to take ideas and flesh them out. They can not be done right away. But this recommendation has been sitting around a long time because the need is so great. I think that one of the frustrating things in the advocacy community and the patient community over many years is that people always say, bring us the evidence, bring us the evidence. And when does a body of anecdote become enough evidence? We now have studies that quantify the problems and we have people’s stories that illustrate in excruciating detail the gaps in the care system. And if it is not ready for public health now, when will it be? So, we have to arrive at a place where reasonableness is a justification that we are willing to accept in order to implement some of these things that just make sense. I am excited about the recommendation, if only for the fact that it gives us an opportunity to flesh it out even further. And I know the Lance Armstrong Foundation has indicated a willingness to work with the NCCS, ASCO, and NCI to further this work. So, we will be back to you with more on that in the future. Dr. Greenfield: We will take a couple more questions and then take a break. Dr. Runowicz: I am from the University of Connecticut as a representative of ASCO’s Survivorship Committee, and I am also president-elect of the American Cancer Society, so I wear multiple hats. In response to Ellen Stovall and also to Anna Meadows, in terms of evidence for decision-making, I think it is not an either/or situation. It is important to keep in mind that expert opinion is a level of evidence. It may not be the best that we have, but if it is all that we have, then that is what we go with while we are trying to get the answer to how many scans we do of the heart in patients who have had adriamycin, or do we need any? I think we have interim guidelines, and then we replace them with evidence-based guidelines when data are available. Ms. Stovall: Thank you for that comment. I just also want to say that maybe being in Washington as long as I have breeds discontent on a lot of

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium levels. One of those levels is that as an advocate and an activist to go to the Hill with either a universal healthcare message or another message. The reaction is often “show me the evidence.” Sometimes, this response is a way to keep things from happening. It is used as a reason to deny the things we need, rather than to promote the things that we know would help us. Dr. Antonio Wolff: I am a breast cancer medical oncologist at Johns Hopkins, and also chair-elect of ASCO’s Health Services Committee. One of the things that strikes me the most, and I always like to say that, ultimately, the enemy is us, because I think somehow every time that I see my ear, nose, and throat (ENT) physician, and he spends five minutes doing a nasal endoscopy and charges me $600 and then I see how much money my department charges for my medical oncology consultation when I spend an hour with a patient, I think the incentives are wrong. And when you see the way we created Medicare and other systems to provide acute care, you realize that as a society, we focus on acute care that is perceived to be sexy and fancy. But we do not focus on things like survivorship care. I think all of us are very well intentioned, and we want to do the right thing. It is the same as with the clinical practice guidelines. As clinicians, we want to do the right thing. Between all the pressures and all the incentives, and for many providers the need to make a living, pay your expenses, make a profit, et cetera, I think until the system changes, all the beautiful products that we are putting out, and educating individuals, it is going to be difficult to get the message out. Dr. Greenfield: Rodger Winn, do you want to respond to Dr. Wolff’s comment from the viewpoint of efficiency and resource use? Dr. Winn: Use of time and resources is a very important consideration. I did a little back-of-the-envelope study on cancer patient follow-up for a breast cancer doctor who treats half his patients with adjuvant chemotherapy, and where they do beautifully and they live. Five years down the road, 26 percent of your practice is going to be those survivors, and 10 years down the road 40 percent of your practice is going to be delivering survivorship care. You are going to have people with acute concerns with cancer treatment waiting to get through the door. And this forecast for resource use is an example of why shared models, nurse-led models, or survivorship clinics have to be explored going forward so that the incentives are right to give these patients the care they need. Dr. Greenfield: A lot of big employers are pushing very hard for efficiency measures, now more euphemistically termed “resource use.” And most of it comes from big companies. That is the stimulus. These mechanisms involve

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium consideration of cost and may be useful, but as physicians, we do not like to hear about them. Pressures to reduce cost may limit the overuse of unnecessary services and free up resources to counter underuse of necessary services. Dr. Susan Weiner: I am from the Children’s Cause for Cancer Advocacy. I was involved in the first survivorship report on childhood cancer. I would like to first congratulate everybody who worked on this report. It is an absolutely fabulous companion piece to the childhood cancer survivors report that the IOM produced about a year and a half ago. My question has to do with issues related to hand offs and transitions. Survivors of childhood cancer have problems that are more dramatic perhaps than those of adults. They develop and change, they grow, and they become adults, and they end up in clinicians’ practices. My question is for Dr. Ayanian, but also for the panel generally. I would like to know whether you would be willing to address the question of transition to adult care for childhood cancer survivors either in one of the breakout sessions or in whatever follow-up activities there are? Dr. Ayanian: It is a great point that you raise, and something that I face in my clinical practice at Brigham Women’s Hospital across the street from Children’s Hospital of Boston. It is not infrequent that we care for survivors of childhood chronic disease, including cancer or other conditions such as sickle cell anemia or severe asthma, who then need to transition to adult care sometime in their late teens or early twenties. Because of their chronic condition, sometimes these adolescents and young adults end up with their pediatric providers into their late twenties and early thirties. It is certainly a topic that we need to pay more attention to. In areas of the country where pediatricians and internists are accustomed to working closely together, often in major academic centers, where children’s hospitals and adult hospitals are side by side, these centers should be leading the way in studying and developing new care models to ensure there is continuity of care. These young adults are a special group of patients who are particularly at risk of getting lost in transition and we need to pay more attention to them. From a professional standpoint, we have a growing number of people who are jointly trained in pediatrics and medicine, and many of them are starting to address questions just like the one you raised about how care should be transitioned for patients with childhood cancers who survive into adulthood. Dr. Greenfield: Let’s have one more response, and then we’re going to have to close. Dr. Winn: This issue came up during our committee’s deliberation. Who, for example, should follow childhood Hodgkin’s disease? Steve Woolf is

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium sitting there with the family practice hat on saying, give us a good guideline, and we will do it. Sara Donaldson is there from Stanford saying, “Over my dead body.” And the answer is we do not have all the answers. But certainly, the issue was addressed, and what it really did is bring the two participants to the table, because that is the only way that this is all going to move forward. Dr. Greenfield: We are going to have to close this session. I think your question and many others that came up earlier will be discussed and answered during the breakout sessions.