Portal de Periódicos da CAPES

The Intersection of Science & Patient Advocacy

2005; Wolters Kluwer; Volume: 27; Issue: 5 Linguagem: Inglês

10.1097/01.cot.0000287358.21530.ee

1548-4688

Ellen Stovall,

Ethics in medical practice

FigureWhat I have found over the last 25 years of my work in cancer-related patient advocacy is that many of the people devoted to cancer research began their careers because of a very personal experience with cancer. I have come to learn from them that it is the more personal dimensions of their lives that inspire their work and that these dimensions often go unspoken as they work with their colleagues to examine and analyze the latest findings and advances in science. I have seen researchers truly at their most animated when they talk about why they got into cancer research, when they talk about cancer survivors they have met or the patients they have treated or those they have lost to this disease. It is then that they—researchers—are most appreciated by us—cancer survivors—who are indebted to them beyond measure. When the National Coalition for Cancer Survivorship (NCCS) was founded more than 18 years ago, the term “cancer survivorship” was only a term of art. It was the vision of the founders of NCCS that one day cancer survivorship would become a term of science. That vision became a reality when, after nearly a decade of our petitioning the National Cancer Institute, an Office of Caner Survivorship was established in 1996; in 2003, the NCI's Professional Judgment Budget deemed cancer survivorship an extraordinary opportunity in cancer research. Soon the Institute of Medicine will give us even more evidence of how much this research is needed by issuing a report dealing with research and policy priorities in adult cancer survivorship and the important role cancer centers and others will need to play in advancing that research. Started in 1971 My personal and professional credentials for speaking about this began more than 33 years ago when, on December 23, 1971, two things happened that got my attention. I began treatment for Stage IV Hodgkin's Disease, and the news programs on television that night announced that President Richard Nixon had signed into law the National Cancer Act—officially declaring a “war on cancer” and authorizing the Director of the National Cancer Institute to be custodian for designing and leading a National Cancer Program in the United States. On that day in 1971, having marked my 25th birthday three weeks earlier and celebrated with my husband the birth of our one-month old baby boy, I was about to learn more than I ever wanted to know about how to deal with a cancer diagnosis on a personal level. Moreover, I began my education about how, as a nation, we deal with cancer as a political issue. Allow me to put some context around this time frame. This was an era without CAT scans or MRIs. This was an era when a diagnosis of some common childhood cancers no longer was considered an immediate death sentence. This was an era where pain and suffering from adult cancers was commonplace, where outcomes were uncertain and where psychosocial and behavioral research was focused on whether or not to tell the patient about the diagnosis, how to prepare for death and how to manage bereavement. That generalized snapshot of cancer care looks very different today. When I was diagnosed in 1971, I wanted to take part in a clinical trial that was testing some new combination of anticancer drugs, but I was considered ineligible since I was four weeks postpartum. Instead, I was treated with radiation alone, which at the time was not considered curative for my stage and type of disease. I was treated with Cobalt 60, total nodal irradiation, which rendered virtually all who received it infertile—an outcome that was not discussed with me prior to my treatment. For 12 years I lived without a recurrence, but with lingering short-term and late effects of the radiation treatment, including early-onset menopause, infertility, radiation-induced pericarditis, costocondritis and cardiac arrhythmia, precipitous deterioration of my lumbar and cervical spine, recurrent bladder inflammations, and a painful and somewhat debilitating chronic condition called avascular necrosis. In 1984, I had a recurrence and was treated with the very same chemotherapy regimen that had been in clinical trial 1971, but which left me with unresolved neuropathy in my feet and hands. The desire to be part of a clinical trial in 1971 and the inability to participate has made me an unrelenting advocate for quality cancer care, with a special respect for the clinical trials process as a way of advancing new therapies for people diagnosed with cancer. I was fortunate to have had both of my cancer diagnoses and treatments under some of the best circumstances. But I have often considered over the last three decades what would have happened if I had not been living in the Washington, DC, metropolitan area where access to quality cancer care was so readily available. What if I had not had adequate health insurance coverage? What if I did not have a supportive employer? What if I had been raised by a family that viewed my cancer diagnosis as a shameful event that put a curse on our household, as some survivors from different cultural backgrounds have told me was their experience? What if my spouse had not been able to cope with my difficulties re-entering our family life as so often is the case with less fortunate survivors? These are the kind of questions that spur one to advocate for others and these are the questions that have helped direct NCCS' advocacy for nearly two decades. Assuring Access to Quality Cancer Care, Access to High-Quality Trials The cornerstone of NCCS' advocacy remains assuring access to quality cancer care for all Americans. Since its inception, NCCS has recognized that access to high-quality clinical trials is a leading component in assuring that care. A quick review of many leading cancer advocacy organizations' Web sites highlights the important role that government agencies and government-funded academic centers play in conducting these trials. What is less obvious is the growing—and indeed now preeminent—position of private industry in planning, funding, and carrying out cancer clinical trials. This development is hardly unwelcome, but it does raise questions about the appropriate balance between public and private investment in cancer research. If we believe as a society that there is a role for the federal government in the clinical research enterprise, then we should pay special attention to the challenges confronting that involvement. Other challenges to patient-oriented cancer research loom large and are in the forefront of NCCS' advocacy. Recent enactment of the Medicare Modernization Act (MMA) and newly issued national coverage decisions by Medicare regarding off-label coverage of four colorectal cancer drugs, IRB reform, FDA reform, and concern about the cost of conducting clinical cancer research are all issues NCCS addresses in its effort to advance a quality-care agenda and a robust environment in which cancer research may be conducted. Today, we in the United States can be proud to have the very best cancer care in the world, with cancer clinical research that is second to none. Great Threat Emerging But a great threat is emerging in the form of unreasonable cuts in payments for total cancer care, which surveys show will inevitably affect not just individual patient care but longer-term progress against the disease as well. On a more positive note, perhaps what we at NCCS are most grateful for is the body of work in the behavioral and social sciences that researchers have developed in addition to the patient support services that seldom get the headlines or applause that an advance in molecular research or nanotechnology might garner. The work of those in these behavioral and symptom management departments are among the most celebrated in our community. Their work tells the story of how cancer survivors are among the most resilient when it comes to our ability to recover and regain our optimism. Distinction between Optimism & Hopefulness The distinction between optimism and hopefulness is an important one for cancer survivors who are living with uncertainty and fear for protracted amounts of time. Optimism emphasizes the positive aspects of any given situation. Hope, on the other hand, can be defined in many ways and is an essential experience of the human condition. It functions in different ways in families and across cultures, but it is universally a way of feeling, a way of thinking, a way of behaving and a way of relating to oneself and one's world. Hope is a necessary element for healthy coping in order to avoid despair and the desire to make life under stress bearable. It is important for all of us cancer survivors to think about our hoping strategies and to be direct with family, friends, and professional caregivers about what is most helpful to us. We can never let anyone tell us that there is nothing further to hope for or that there is no hope. There is always something to hope for. Cancer survivors have discussed their fears and their hopes as well as their feelings of anxiety and uncertainty with researchers and other oncology professionals. For many decades, in numbers now approaching 10 million strong, cancer survivors have shared their experiences among their peers in support groups, in waiting rooms, over the telephone, and over the Internet. With few exceptions, cancer survivors report that the act of articulating their fears and having them validated by sharing them with others is a way of gaining a sense of control and maintaining a sense of hopefulness. Cancer survivor and author Arthur Frank, in his book At the Will of the Body, put it this way: “I am trying, in this third year after cancer, to be a little less afraid. Some days the world seems immensely fearful…and I realize that the only real difference between people is not health or illness, but the way each holds onto a sense of value in life. When I feel I have no time to walk out and watch the sunlight, my recovery has gone too far. A little fear is all right. It is all right to know that in a month I could be lying in a hospital bed asking myself how I spent today. Holding onto that question—how did you spend today?—reminds me to feel and see and hear. When the ordinary becomes frustrating, I have to remember those times when the ordinary was forbidden to me. Now that I am back in the ordinary, I have to retain a sense of wonder at being here.” I know that I speak for everyone at NCCS when I thank you for devoting your professional careers to assuring that we have a robust scientific research environment for studying all these issues. It is the work and responsibility of all of us together to assure we have a viable health care system that will be accountable to all of our citizens who can benefit from your good work. Through our collective advocacy for the need to study, not only the causes of cancer, but also the symptoms and distress that accompany a diagnosis of cancer, and by pressing our thought leaders to assure the provision of essential care services for people with cancer and their families, you and your colleagues can and are fulfilling Winston Churchill's vision so eloquently stated: “We shall draw from the heart of suffering itself the means of inspiration and survival.”